I gained 3 extra pounds. Now I weigh 120. The WIIFIT is making me have more muscle. I am also having amazing balance. I have been healthy all week. I love having it. I am so glad my Dad got it for me. My WII also told me how much weight I need to fight off disease and other problems. I need to get up too 125lbs. I am close, 5 pounds away. My neighbor is starting up Special Olympics. She really wants to swim. It will be fun. My Dad and Gary are coming down on Wed and are leaving Sunday. So I will be off until then. Just don't forget the hope that you have no. The life you have no. Live it love it. Remembers all the stuff I told you. Hope remains. Don't let go of it. Fight for happiness. You have it. You deserve it. Countdown for the cure will live forever. Even though I am on holiday.
Friday, June 26, 2009
Thursday, June 25, 2009
Loving Life
Learn to love everything about you life. Love and learn to accept life as it comes. Accepting that we have HD, will make our lives more complete. We can truly love life again. Love the hope. Love the research. We all got a lot to give to the world. Get outside,. Volunteer. Do studies. Go outside and have fun. Don't stop living. Never stop living. Never stop loving yourself. forgive yourself. We can't help it. This is HD. We got it. It is not what we choose. It is what we make of it that counts. Life can be great. Make it great. Make it fun. make a stand, to live better. You have options on how to better yourself. Stay active. Fight all ways. Don't let HD posion you. Never let it in you head. Fight it. Get that HD out of your head. Just live. Life is what we make it. Life is what we want it to be. Fight it. Live it. It is our clay. Make what you see your life being. Live your life and make it worth fighting for.
Transform Your Life With Meditation
Transform Your Life With Meditation
The ancients knew what they were doing when they developed meditation. This soothing, calming practice not only helps you relax, but also provides many proven physical benefits.
By Linda FosterMedically reviewed by Cynthia Haines, MD
Our minds are constantly busy. We think about the future and the past. We judge and analyze who and what we encounter, often unknowingly. This endless internal chatter leaves little room for peace of mind. But meditation may be able to help you quell the chatter, achieve that inner peace, and reap physical and emotional, benefits.
There are many types of meditation, says Philip L. Jones, LCSW, a meditation teacher in Columbia, Mo. Some types are meant to calm you down, while others are designed to help you develop qualities that you value.
“Meditation is not concerned with thinking about or reflecting on something,” says Jones. “Meditation is a way of turning attention inward. What one does with that attention depends on the goal or purpose of the meditation.”
Meditation Practices That Calm
To help you relax, relieve stress, and become more tranquil, Jones suggests the following types of meditation:
Concentration meditation
Absorption meditation, also called jhana
Transcendental meditation
“These bring your attention back, again and again, to the breath, an image, word, or sound that can lead to a sense of calmness,” he says.
Meditation Practices That Develop Valued Qualities
Other forms of meditation can help you improve your acceptance of self and others and your sense of compassion, give you insight into the nature of life’s experiences, and enhance your ability to meet life’s difficulties with contentment and equanimity. If your goal is to develop qualities like these, Jones suggests trying one of these types of meditation:
Vipassana, or insight meditation
Mindfulness meditation
Zazen, or zen meditation
Research on Buddhist Meditation Training
One recent study on meditation looked at two types of Buddhist meditation training, called focused attention and open monitoring meditation.
Focused attention meditation involves maintaining moment-to-moment focus on your breath, a sound, or an object. With focused attention, when the mind wanders away from the point of focus, you continually return to that object of attention. It helps you concentrate with little effort and helps you remain calm in the presence of negative emotional events.
Open monitoring meditation calls for you to watch your thoughts and feelings without reacting to them. With open monitoring, you learn to observe the ebb and flow of “mind chatter” in a detached way — not following a thought. This type of meditation helps you to be more flexible emotionally and, like focused attention, less reactive to negative emotional events.
What the researchers found when they looked at these two types of Buddhist meditation was that both forms of have a semi-permanent, positive impact on both the brain and behavior.
Physical Effects of Meditation
Other research has shown that long-term meditation thickens the cortex of the brain in areas associated with processing input from the senses, attention, and awareness of what’s going on inside the body.
An analysis of 20 scientific studies demonstrated that mindfulness meditation could eliminate physical and psychological suffering. The studies covered a wide range of ailments, from pain and cancer to anxiety and depression. Meditation can also lower blood pressure and positively affect heart health, researchers say.
How to Meditate
According to Jones, there are many ways to meditate:
By repeating a word, syllable, or phrase
By visualizing an image or a scene or by focusing attention on a light, a flame, or a colored object
While walking, sitting, standing, or lying down
One of the simplest ways to meditate is by focusing attention on one location in the body such as the tip of the nose, the upper lip, the chest, or the abdomen. Then, as you breathe in and breathe out, notice the sensations in this location. Jones recommends that each time your attention wanders away from this location and the sensations of breathing, you gently bring attention back to the same spot and to the sensations of your breath.
If you’re reluctant to try one of these techniques on your own, a meditation teacher can get you started and guide you through the process.
Life-Enhancing Benefits of Meditation
While meditation is not a form of psychotherapy, sometimes psychological insights do arise during meditation, says Jones.
Besides the numerous physical and mental-health benefits, as you practice meditating and are able to pay more attention to your moment-to-moment experience, you will more clearly notice the little details of life: the wind against your skin, the smell of the ocean, and the sounds of nature.
“In this way, you become more vibrant and alive,” says Jones.
The ancients knew what they were doing when they developed meditation. This soothing, calming practice not only helps you relax, but also provides many proven physical benefits.
By Linda FosterMedically reviewed by Cynthia Haines, MD
Our minds are constantly busy. We think about the future and the past. We judge and analyze who and what we encounter, often unknowingly. This endless internal chatter leaves little room for peace of mind. But meditation may be able to help you quell the chatter, achieve that inner peace, and reap physical and emotional, benefits.
There are many types of meditation, says Philip L. Jones, LCSW, a meditation teacher in Columbia, Mo. Some types are meant to calm you down, while others are designed to help you develop qualities that you value.
“Meditation is not concerned with thinking about or reflecting on something,” says Jones. “Meditation is a way of turning attention inward. What one does with that attention depends on the goal or purpose of the meditation.”
Meditation Practices That Calm
To help you relax, relieve stress, and become more tranquil, Jones suggests the following types of meditation:
Concentration meditation
Absorption meditation, also called jhana
Transcendental meditation
“These bring your attention back, again and again, to the breath, an image, word, or sound that can lead to a sense of calmness,” he says.
Meditation Practices That Develop Valued Qualities
Other forms of meditation can help you improve your acceptance of self and others and your sense of compassion, give you insight into the nature of life’s experiences, and enhance your ability to meet life’s difficulties with contentment and equanimity. If your goal is to develop qualities like these, Jones suggests trying one of these types of meditation:
Vipassana, or insight meditation
Mindfulness meditation
Zazen, or zen meditation
Research on Buddhist Meditation Training
One recent study on meditation looked at two types of Buddhist meditation training, called focused attention and open monitoring meditation.
Focused attention meditation involves maintaining moment-to-moment focus on your breath, a sound, or an object. With focused attention, when the mind wanders away from the point of focus, you continually return to that object of attention. It helps you concentrate with little effort and helps you remain calm in the presence of negative emotional events.
Open monitoring meditation calls for you to watch your thoughts and feelings without reacting to them. With open monitoring, you learn to observe the ebb and flow of “mind chatter” in a detached way — not following a thought. This type of meditation helps you to be more flexible emotionally and, like focused attention, less reactive to negative emotional events.
What the researchers found when they looked at these two types of Buddhist meditation was that both forms of have a semi-permanent, positive impact on both the brain and behavior.
Physical Effects of Meditation
Other research has shown that long-term meditation thickens the cortex of the brain in areas associated with processing input from the senses, attention, and awareness of what’s going on inside the body.
An analysis of 20 scientific studies demonstrated that mindfulness meditation could eliminate physical and psychological suffering. The studies covered a wide range of ailments, from pain and cancer to anxiety and depression. Meditation can also lower blood pressure and positively affect heart health, researchers say.
How to Meditate
According to Jones, there are many ways to meditate:
By repeating a word, syllable, or phrase
By visualizing an image or a scene or by focusing attention on a light, a flame, or a colored object
While walking, sitting, standing, or lying down
One of the simplest ways to meditate is by focusing attention on one location in the body such as the tip of the nose, the upper lip, the chest, or the abdomen. Then, as you breathe in and breathe out, notice the sensations in this location. Jones recommends that each time your attention wanders away from this location and the sensations of breathing, you gently bring attention back to the same spot and to the sensations of your breath.
If you’re reluctant to try one of these techniques on your own, a meditation teacher can get you started and guide you through the process.
Life-Enhancing Benefits of Meditation
While meditation is not a form of psychotherapy, sometimes psychological insights do arise during meditation, says Jones.
Besides the numerous physical and mental-health benefits, as you practice meditating and are able to pay more attention to your moment-to-moment experience, you will more clearly notice the little details of life: the wind against your skin, the smell of the ocean, and the sounds of nature.
“In this way, you become more vibrant and alive,” says Jones.
New Support Group
On of my WEAREHD friend is staating a support gorup. It is in the Acadiana Region of the Louisiana Chapter of HD support group.
Get involved with genetic testing research at University College London
Get involved with genetic testing research at University College London
Update from Naomi Richards - April 2009
Thank you to all who have taken part in the genetic testing research at UCL.
I have been overwhelmed by the number of willing volunteers who have contacted me. So thank you all for your contribution, and I hope to reflect your views and experiences as best I can.
I have learnt a great deal through speaking to people, and I only hope that my study will contribute to an increased awareness of the devastating impact HD has.
I am going to be taking part in the Great South Run in aid of the HDA so please visit
Completed Studies
1 Completed
A Study of the Novel Drug Dimebon in Patients With Huntington's Disease
Condition:
Huntington's Disease
Interventions:
Other: Placebo; Drug: Dimebon
2 Completed
Safety Study of the Novel Drug Dimebon to Treat Patients With Huntington's Disease
Condition:
Huntington's Disease
Intervention:
Drug: Dimebon
3 Completed
Individuals' Patterns of Disclosure About Huntington's Disease (HD) and the Association With Adaptation to HD
Conditions:
Huntington's Disease; Disclosure
Intervention:
4 Completed
Safety and Tolerability Study of Phenylbutyrate in Huntington's Disease (PHEND-HD)
Condition:
Huntington's Disease
Intervention:
Drug: sodium phenylbutyrate
CIT-HD: Study in Huntington's Disease
CIT-HD: Study in Huntington's Disease
This study is currently recruiting participants.
Verified by University of Iowa, January 2009
First Received: December 30, 2005 Last Updated: June 22, 2009
History of Changes
Sponsors and Collaborators:
Sponsors and Collaborators:
University of Iowa
Cure Huntington Disease Initiative (CHDI)
Information provided by:
University of Iowa
ClinicalTrials.gov Identifier:
NCT00271596
Information provided by:
University of Iowa
ClinicalTrials.gov Identifier:
NCT00271596
Purpose
This research plan proposes to conduct a double-blind, placebo-controlled pilot clinical trial in 36 adults with mild Huntington's disease (HD) to address the following research aims:
To determine the effect of citalopram compared to placebo in patients with early HD on executive function and other outcome variables including functional measures (health-related quality of life, work productivity, and self-reported attention), motor performance, and psychiatric status,
To study the relationship between executive function and functional status in patients with early HD after selective serotonin reuptake inhibitor (SSRI) treatment, and
To examine the effect of citalopram treatment on volumetric and metabolic (i.e, N-acetyl-aspartate concentration) measures in the neostriatum among patients with recently diagnosed Huntington's disease.
Phase
Huntington DiseaseChorea AttentionExecutive Dysfunction
Drug: 20mg qd citalopram or placebo
Phase II
Study Type:
Interventional
Study Design:
Treatment, Randomized, Double Blind (Subject, Investigator), Placebo Control, Parallel Assignment, Efficacy Study
Official Title:
A Randomized, Placebo-Controlled Pilot Study in Huntington's Disease (CIT-HD)
Further study details as provided by University of Iowa:
Primary Outcome Measures:
executive function and other outcome variables including functional measures (health-related quality of life, work productivity, and self-reported attention), motor performance, and psychiatric status [ Time Frame: after 16 weeks of treatment ] [ Designated as safety issue: No ]
Secondary Outcome Measures:
volumetric and metabolic (i.e., N-Acetyl-Aspartate concentration) neuroimaging measures in the neostriatum [ Time Frame: after 16 weeks of treatment ] [ Designated as safety issue: No ]
serotonin transporter gene polymorphism (5HTTLPR) and cognitive treatment response to an SSRI [ Time Frame: after 16 weeks of treatment ] [ Designated as safety issue: No ]
Estimated Enrollment:
36
Study Start Date:
November 2005
Estimated Study Completion Date:
March 2012
Estimated Primary Completion Date:
March 2012 (Final data collection date for primary outcome measure)
1: Experimental
20mg qd citalopram or placebo
Drug: 20mg qd citalopram or placebo
a selective serotonin reuptake inhibitor (SSRI) treatment administered over 16 weeks Detailed
Description:
Specific Aims:
To examine the effects of sixteen weeks of treatment with the selective serotonin reuptake inhibitor (SSRI) citalopram compared to placebo on executive function in patients with early Huntington's disease (HD).
To study the relationship between executive function and functional status in patients with early HD after SSRI treatment.
To determine the effect of sixteen weeks of citalopram compared to placebo on other outcome variables including functional measures (health-related quality of life, work productivity, and self-reported attention), motor performance, and psychiatric status.
To examine the effect of citalopram treatment on volumetric and metabolic (i.e, N-Acetyl-Aspartate concentration) measures in the neostriatum among patients with recently diagnosed Huntington's Disease.
Main Hypotheses:
At the end of the treatment protocol (i.e., sixteen weeks), patients receiving citalopram as compared with placebo will show a significantly greater improvement on tests of executive function.
Performance on measures of executive function will be significantly associated with measures of functional status.
At the end of the treatment protocol (i.e., sixteen weeks), patients receiving citalopram as compared with placebo will show a significantly greater improvement in functional status and psychiatric ratings; motor score is not expected to change as a result of citalopram therapy.
Using structural MRI and 1H-MRS, after 16 weeks of citalopram treatment, patients with recently diagnosed Huntington's Disease will show greater changes from baseline on volumetric and metabolic (i.e., N-Acetyl-Aspartate concentration) neuroimaging measures in the neostriatum than those on placebo.
Eligibility
Ages Eligible for Study:
18 Years to 65 Years
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
Gene positive HD test (or, if untested, an HD diagnosis) with some abnormal motor signs (i.e., diagnostic confidence level of greater than or equal to 2 as measured by the UHDRS).
Aged between 18 and 65
Ability to provide written informed consent
Mild stage HD (Shoulson and Fahn Scale Stage 1 or 2)
Mild executive dysfunction: participants will be given the Wide Range Achievement Test-4
(WRAT-4) Reading Subtest as a measure of estimated verbal IQ, as well as the UHDRS
Cognitive Scale tests (Stroop Test, Verbal Fluency, and Symbol Digit Modalities Test).
Patients will be included if they score at least 1 standard deviation below their WRAT-4 estimated cognitive level using age and education-corrected norms for the cognitive tests on at least two of the UHDRS cognitive tests.
Exclusion Criteria:
Age greater than 65
Current major depression at the screening visit or current suicidal ideation.
Any unstable or severe psychiatric disease including DSM-IV-TR diagnoses of schizophrenia, bipolar affective disorder, dementia, delirium, severe anxiety and/or substance abuse/dependence.
Current use of an SSRI or other treatment for depression (e.g., use of an MAOI) or treatment with an SSRI within the past 60 days.
To ensure performance on cognitive measures are not affected by specific concomitant medications, participants taking atypical antipsychotics, kava kava, St. John's Wort, Ginkgo Biloba, or anxiolytics may be excluded unless their dose and dosing frequency have remained stable for 60 days prior to enrollment. Continued participation also requires the dose and dosing frequency remain stable throughout the study
Patients who are pregnant, nursing, or planning to become pregnant during the study.
Patients who are unable to participate in the study assessments (cognitive, functional, psychiatric and motor scales) due to cognitive, motor, or sensory impairments (i.e., significant vision or hearing deficits).
Other serious medical conditions such as cardiovascular or cerebrovascular disease; head injury deemed clinically significant by the PI; neurological disorder or insult other than HD.
Learning disability or other medical condition that is likely to affect cognitive function; history of symptoms indicative of attention deficit hyperactivity disorder (ADHD) in childhood; or a diagnosis of ADHD.
It is important to note that participants who are unable to receive an MRI scan may still participate in this study
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00271596
Contacts
Contact: William H Adams, B.A.
319-353-4411
William-H-Adams@uiowa.edu
Locations
United States,
Arizona
Mayo Clinic Arizona
Recruiting
Scottsdale, Arizona, United States, 85259
Contact: Amy K Duffy 480-301-4750 Duffy.Amy@mayo.edu
Principal Investigator: John Caviness, M.D.
Contact: Amy K Duffy 480-301-4750 Duffy.Amy@mayo.edu
Principal Investigator: John Caviness, M.D.
United States, Iowa
The University of Iowa
Recruiting
Iowa City, Iowa, United States, 52242
Contact: William H Adams, B.A. 319-353-4411 William-H-Adams@uiowa.edu
Contact: Nancy L Hale, B.S., R.N. 319-353-4537 Nancy-Hale@uiowa.edu
Principal Investigator: Leigh J Beglinger, Ph.D.
Principal Investigator: Jess G Fiedorowicz, M.D., M.S.
Recruiting
Iowa City, Iowa, United States, 52242
Contact: William H Adams, B.A. 319-353-4411 William-H-Adams@uiowa.edu
Contact: Nancy L Hale, B.S., R.N. 319-353-4537 Nancy-Hale@uiowa.edu
Principal Investigator: Leigh J Beglinger, Ph.D.
Principal Investigator: Jess G Fiedorowicz, M.D., M.S.
United States,
New York
University of Rochester
Recruiting
Rochester, New York, United States, 14618
Contact: Amy Chesire, LCSW-R, MSG 585-341-7519 Amy.Chesire@ctcc.rochester.edu
Principal Investigator: Kevin Biglan, M.D., M.P.H.
University of Rochester
Recruiting
Rochester, New York, United States, 14618
Contact: Amy Chesire, LCSW-R, MSG 585-341-7519 Amy.Chesire@ctcc.rochester.edu
Principal Investigator: Kevin Biglan, M.D., M.P.H.
Loss and Grief
Everyone experiences feelings of loss and grief at some point in their lives, and those who are impacted by Huntington’s disease are no exception. Fortunately, there are many coping strategies that people can adopt to help them deal with those overwhelming feelings in a productive and healthy manner.
In the publication "Loss & Grief" written by Paul Klodniski, Director of the Huntington Society of Canada’s Eastern Ontario Resource Centre, “grief work” can help people come to terms with their loss. Not everyone needs to go through these types of exercises, but for those who are having difficulty dealing with their feelings, these techniques can be helpful
.• Reach out to others and ask for their support after a loss. Discuss your feelings, review the incidents surrounding the death with family and friends or, at the very least, spend time with other people to avoid feelings of isolation
.• Years of caregiving or working long hours to support the family financially may have caused you to restrict your social contact with people outside of your family. Now it’s more important than ever to set aside time for socializing with friends – people who aren’t coping with the same loss that is affecting you and other family members.
• Don’t hesitate to accept any and all help from extended family, friends, home care services, respite programs for both inside and outside of the home, and HSC camps
. • Don’t be discouraged if friends behave oddly or withdraw from you. Death can make others feel anxious or they may be afraid to cause you pain by talking about a loved one who has passed away. It may be up to you to let your friends know how they can help you.
• If you’re not receiving the social support you need, it’s important to reach out and ask for help. That might mean asking a friend to run an errand, cook some meals, help you sort through your loved one’s belongings or just lend an ear
.• Support groups can be an excellent resource when dealing with grief. You can gain a lot of comfort from people who have gone through a similar experience and understand what you’re feeling. In addition, most support groups are run by leaders or facilitators who are familiar with healthy grieving and can offer advice that’s geared to all members of the family.
• Lean into the pain. Avoiding the pain of grief can cause long-term physical and emotional problems and that’s why it can be beneficial to confront your loss. That might mean talking about the death, writing about it in a journal or visiting the gravesite. The immediate but temporary pain this might cause can help you progress in overcoming the long-term grief.
• Reaching out to art, music, poetry or drama can be an effective way to deal with your feelings. Be careful to avoid alcohol, drugs or excessive work hours in an attempt to avoid or dull the pain of grief.• Rituals can be very helpful because they provide structure at a time when your life has changed abruptly. Attending visitations, funerals or memorial services, or setting aside commemorative anniversary dates are rituals that others have found useful.
• An experienced counsellor can help you get through a difficult stage. Whether you opt for counselling immediately after the loss or seek help if the grief seems long-lasting, professional help can be beneficial when feelings of anger, loneliness or grief aren’t subsiding.Many of the techniques used in grief work can be applied to feelings of loss, which are not uncommon among people dealing with HD. Losing the ability to walk, talk, work and eat has a dramatic effect on both family members and the person living with HD. Starting grief work at this time can help you gain invaluable social support and open up the lines of communication between yourself and the person with the disease.Do’s and Don’ts about Grieving• Avoid making major life decisions during periods of intense grief
.• Avoid driving during this time and if you must drive, concentrate fully.• Ensure that you get adequate rest since fatigue is a very common reaction of grief
.• Go for a complete medical check-up approximately six months into your grieving to make sure your health is in order.• Eat well. When you’re depressed or have no appetite or desire to cook, it’s very easy to overlook your nutritional needs. Proper nourishment will make you feel better both physically and emotionally.• Don’t build a wall around yourself for fear of being hurt by a future loss. It just makes it more difficult to deal with the current loss
.• Don’t expect your grief to follow a predictable path or schedule.There are certain times when it’s imperative to seek professional help. If you experience persistent thoughts of suicide, are unable to provide for your basic needs like showering or eating, or experience one particular reaction to grief (such as depression or apathy) for several weeks or months, seek out help from a counsellor, making sure to mention that you are going through a period of grieving.
Wednesday, June 24, 2009
Bocchi
I fell so much today. I kept bumping into things. I am trying to accpet that. Nothing can change the fact that I do fall and hit things.The last Tee Ball was fun. I slide into second base again. We had a party afterwards. They have swimming starting up in July. They are also starting Boccie on Tuesdays. Trevor will be volunteering some days. They need him. I got the job. I need to find out where they need me. On Sunday we are going to go to Cranbrook to see the new Transformers movie. Then we go to Alice's. Trevor's sister Jan will be there with her hubby Chris. Alice got us two nights in a hotel room. They are Sun and Mon. Then we go to Calgary. See my Nero and come back on Tues night. I am so excited. It is going to be a great time. We will have fun.
HD and the Total Functional Capacity (TFC) Scale
HD and the Total Functional Capacity (TFC) ScaleThe progression of HD is divided into five stages defined by the patient's score on the Total Functional Capacity (TFC) Scale, which details level of function in the domains of workplace, finances, domestic chores, activities of daily living and requirements for unskilled or skilled care. The interdisciplinary palliative care team assists patients and their families in articulating their wishes and the goals of care, and developing a plan to achieve those goals. When a person with HD is no longer able to live independently, palliative care turns toward adaptation to advanced illness and disability and issues of life completion and closure, while continuing to provide comfort and support for the person with HD and his or her family.
(http://www.mywhatever.com/cifwriter/content/41/pe5670.html)
(http://www.mywhatever.com/cifwriter/content/41/pe5670.html)
Tuesday, June 23, 2009
Fighting
Fight for every breathe you take.Fight for every smile you make. We fight everyday. We have no choice. We did not choose this. HD chose us. It is up to us to fight and survive. We need to live the best life ever. Fight for the future. Fight for hope. Hope is real. Hope is now. Make it count. make your life count. Life is what you make it. Make life. Make it count. Make every minute count. Make every second count. Make it your dream. Live out your dreams. Don't ever give up.
Eyes on the prize
Watching the professional hockey and basketball playoffs made me think about what it takes to win the elusive championship ring.
The season for these athletes began about ten months ago and included more than 100 games complicated by travel schedules and time zone problems.
What is the single difference between the team that hoists the championship trophy and all the other who aspire to it? Obviously, this issue is debated by all sorts of "experts," but I would offer that the key factor is meticulous attention to detail.
The teams that win leave nothing to chance. They shift the odds in their favor by the reviewing films of the opposition so they can anticipate how they will act. They minimize distractions, and they have a laser-like focus on the task at hand. Everything in their lives becomes secondary to putting that puck in the net or that basketball in the hoop.
So, what is the lesson for us mere mortals? If we leave our lives up to chance, if we roll the dice or spin the roulette wheel, it's unlikely that the outcome will be the one we want. However, if we write down our goals — if even for the day — and map out what we need to do to achieve them, we increase our chances of success.
Do you agree? What have I missed in this brief review of what it takes to become a champion?
The season for these athletes began about ten months ago and included more than 100 games complicated by travel schedules and time zone problems.
What is the single difference between the team that hoists the championship trophy and all the other who aspire to it? Obviously, this issue is debated by all sorts of "experts," but I would offer that the key factor is meticulous attention to detail.
The teams that win leave nothing to chance. They shift the odds in their favor by the reviewing films of the opposition so they can anticipate how they will act. They minimize distractions, and they have a laser-like focus on the task at hand. Everything in their lives becomes secondary to putting that puck in the net or that basketball in the hoop.
So, what is the lesson for us mere mortals? If we leave our lives up to chance, if we roll the dice or spin the roulette wheel, it's unlikely that the outcome will be the one we want. However, if we write down our goals — if even for the day — and map out what we need to do to achieve them, we increase our chances of success.
Do you agree? What have I missed in this brief review of what it takes to become a champion?
US HD Events
MASSACHUSETTS
Friday, July 31, 2009
Party at the Park- New England Region
State Street Pavilion Club at Fenway Park
Ticket Are On Sale Now
Early bird Registration - through July 3, 2009
$ 60.00 per person.
Regular Registration - July 4, through July 24, 2009
$ 70.00 per person.
Children under 16- $10.00 per child (early bird or regular registration)
Price Includes….
Fenway Buffet with Ice Cream Sundae Bar
Music By Boots & Company- Eddie (Boots) Russo
Guided Tour of Fenway Park
Tour of Fenway-Please register for the tour in advance, as part of this RSVP.
( Please arrive 10 minutes before the scheduled tour)
Master of Ceremonies for the Evening
WBZ News Radio Talk Show Host Jordan Rich
Special Guest
Legendary Red Sox Pitcher Jim Lonborg
Enjoy
Great Buffet Supper including Fenway Franks
Make Your Own Ice Cream Sundae Dessert Bar
Live Music
Guided Tour of Fenway Park
Live and Silent Auctions
Featuring the opportunity to bid live on
Dinner for Two and an Evening of Red Sox Baseball,
Seated with General Manager Theo Epstein in his Private Suite
For more information please contact:Virginia Goolkasian- 888-554-8102 ex:13
Registered users can request event reminders.
MICHIGAN
Saturday, July 18, 2009
Sta-Bil Great Lakes Summer Nationals- Lawnmower Race - Michigan Chapter
Paul C. Miller (Sparta, MI) Airport
For more information please contact:dstick44@chartermi.net
MISSOURI
Saturday, July 18, 2009
Happy Hour for HD-St. Louis Chapter
Hearts for Huntington's
Happy Hour!!!
July 18, 2009
Saturday
4p.m. -Bar Closes
"Snibo's Café & Sports Bar"
2129 Parkway Dr.
St. Peters, MO 63376
Hwy 70 to Cave Springs Exit~ Left N. Service Rd. (By Baue)
To Parkway Dr-Right
Snibo's will be donating a portion of the proceeds to the:
Hearts for Huntington's Project 2009
For more information contact: Kristen Turner~314.607.2679
Peggy Cribbin~314-647-4372
OKLAHOMA
Wednesday, July 08, 2009
Woody Guthrie Music Festival-Oklahoma Chapter
For More Information Call: Cathy McKinney
(877) 232-4372
(405) 236-4372
(405) 473-5443
The Oklahoma Woody Guthrie Festival will be held in mid-July to commemorate his legendary music and birthday. This free musical program is planned from July 8-12 in his hometown of Okemah, Oklahoma.
Mary Jo Guthrie Egmon will be the guest of honor for this annual event honoring the impact that her brother Woody made on music. This annual festival is funded by the OKC Arts Council.
Huntington’s disease is a progressive neurological disease that killed Oklahoman singer, and writer, Woody Guthrie in 1967. His creative spirit and outspoken demeanor made him an American symbol for social consciousness. When the disease silenced him, Woody’s family chose to support the efforts of the Huntington‘s Disease Society of America (HDSA) through research and public education.
For more information about the Woody Guthrie Festival,
go to www.woodyguthrie.com or you go to our
Web site at www.okhdsa.com or call the local office at (405) 236-4372.
Run for HD
Run for HD
6/28/2009
8:30AM
Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walkWhen: Sunday, June 28th, 2009. Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw Join us for a walk in the park or a fun run. Many volunteer opportunities. To register please go to http://www.events.runningroom.com/site/?raceId=4227
6/28/2009
8:30AM
Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walkWhen: Sunday, June 28th, 2009. Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw Join us for a walk in the park or a fun run. Many volunteer opportunities. To register please go to http://www.events.runningroom.com/site/?raceId=4227
Contact: Tim Irwin 647-238-6294 or run@hdtoronto.org
To download the brochure and pledge sheet please visit http://www.huntingtonsociety.ca/english/content/?page=191
UK HD Events
Huntington's Disease Family Day
WhenFriday, 26 Jun 2009
WherePJ Care,
1 Sherwood Place,
153, Sherwood Drive,
Bletchley, Milton Keynes,
MK3 6RT
DescriptionThe aim of the day is to provide people affected by Huntington’s disease with an opportunity to meet each other and to help them gain information. Telephone 0151 298 3298 or
DescriptionThe aim of the day is to provide people affected by Huntington’s disease with an opportunity to meet each other and to help them gain information. Telephone 0151 298 3298 or
Friday, 17 July
All day
HDA Activity Weekend - New Forest
When17 – 19 Jul 2009
WhereAvon Tyrrell Activity Centre, New Forest
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
HDA Activity Weekend - New Forest
When17 – 19 Jul 2009
WhereAvon Tyrrell Activity Centre, New Forest
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
When17 – 19 Jul 2009
WhereAvon Tyrrell Activity Centre, New Forest
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
Sunday, 19 July
All day
HDA Activity Weekend - New Forest
When17 – 19 Jul 2009
WhereAvon Tyrrell Activity Centre, New Forest
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
Saturday, 1 August
All day
HDA Activity Weekend - Cambridgeshire
When31 Jul – 2 Aug 2009
WhereMepal Outdoor Centre, Cambridgeshire
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
HDA Activity Weekend - North Wales
When31 Jul – 2 Aug 2009
WhereLledar Hall Outdoor Education Centre, North Wales
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
When31 Jul – 2 Aug 2009
WhereLledar Hall Outdoor Education Centre, North Wales
DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298
Friday, 31 July
All day
HDA Activity Weekend - Cambridgeshire
When31 Jul – 2 Aug 2009
WhereMepal Outdoor Centre, Cambridgeshire DescriptionSign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years. Telephone 0151 298 3298 or download booking form from the HDA website.
Monday, June 22, 2009
HD is a venereal disease
Today my Nurse friend, Penny told us, that someone is uneducated enough to say the HD is a VD! They thought I could spread it to Trevor! How funny is that! We can't stop laughing. Trevor reformatted my computer. Its messed up. I was without Internet for 3 days. The past three days I have been dancing like crazy. It has Trevor really worried . The past three days he has been worrying. He does not want to lose me. We have a change of plans. On Sunday we leave to see Alice. Trevor's Sister and Brother In Law will both be here. Tuesday i go to see Dr. . That day we come back. My Dad and Gary come down on the first of July. Celebrate life. Life is worth it. It is worth living. Celebrate what we have. Never take anything for granted.
Friday, June 19, 2009
Happy Father's Day
My Dad loves football. That is where I got the idea for that. I do not know where I would be without my Dad. He had to raise us, look after Mom, and work. My Dad pays for my site too. Web pages are worth a bit of cash. He paid for my schooling. I had HD. There was no way I could pay back loans. I payed him back by graduating top of my class, in both schools. I pay him back with my site. All of these awards are to let him know that is money is never wasted. Trevor and I would be lost without him. He is on of our strongest support person. My Dad would never stop supporting us. He also looks after Gary every week day. I am excited this week I get to go home to see him again. Then 2 weeks later he is coming to see us. Can't wait to see my Dad. They are all coming!! Happy Father's Day Dad. He comes here alot.
Huntington's Disease Deciphered
The researchers were able to show that the mutated huntingtin gene activates a particular enzyme, called JNK3, which is expressed only in neurons and, further, to show what effect activation of that enzyme has on neuron function.
Thursday, June 18, 2009
Saving Kitty
I enjoy every night. We take Lucky out for a walk and I ride my scooter. I am getting really good. Trevor has a course for me to practice my turning. I look forward to the walk more than Lucky. Princess is spending the week with her Dad. Her and Lucky are best friends now. I can get them to play ball. They are totally like kids. When Terry comes to get her. I tell it like she is a little girl. Lucky is totally our little boy. I volunteers at PAWS. You hear and see animal abuse. It just makes me want to spoil them more. I am going to scooter, with Trevor and get the cat owner's address. I talked to PAWS, when I went in there to volunteer. They just hired a new cruelty officer. Animals are so sweet. I just don't know who would hurt one. Everyone, stand up for what you believe in. Let nothing stand in your way.
Wednesday, June 17, 2009
Hope Floats
I can't wait to go home. I can't wait for my family to come down. I miss them. I am glad to go home and see them. Megan's baby will come after our visit. We are going to miss the birth. Today there is a thunderstorm. We could no do Tee Ball. The last Tee Ball is next week. Then comes swimming. Enjoy the summer sun. Hope you have as much fun as I do. Hope is the word that we need. We need hope to survive. Hope needs us to survive too. Never lose sight. We know that hope is tangible and real. Fight for your your hope. Never lose it. A shred missing is enough. Don't lose one shred of hope. Keep it always by your side. Don't ever let go. Nothing stands in your way. Hope is in our hearts. It will never leave. We can never let HD take our hearts away.
Special Edition: Call to Action
On Friday June 12, 2009 the Globe and Mail wrote an article entitled Huntington’s history an insurance hurdle. The article’s focus was genetic discrimination. The issue was also raised on Canada AM, CTV News and in the Toronto Star.
We are encouraging as many of our friends across Canada to write to the Editor of the Globe and Mail, the Editor of the Toronto Star and to CTV to express their concerns and experiences (if possible) with genetic discrimination. We have summarized the three main points in the article for your reference. This is a critical issue to all Canadians and should be in the media and brought to the attention of Government, so we are asking our community to make their voices heard.
Even though this study i
s the first of its kind in Canada, HD is not the only genetic disorder (such as Breast Cancer and Colon Cancer) that experiences discrimination.
This study illustrates the need for continued research and improved public policy in order to create a safe and equal society for all Canadians regardless of their genes.
The decision to undergo genetic testing is highly personal and should not be influenced by external economic factors. It is unethical for anyone to feel that they must have genetic testing for economical reasons. No one should feel they must be tested under duress. Similarly, no individual should be discriminated against simply because they have sought out their genetic make-up.
To provide feedback on the article please send your comments to:
Globe and Mail Letters to the Editor
letters@globeandmail.caFax: 416-585-5085
(As per the Globe and Mail the letter must include the name, mailing address and daytime phone number of the writer).
Toronto Star Letters to the Editor
Fax: 416-869-4322
Mail: One Yonge Street, Toronto, Ontario
M5E 1E6. (As per the Star, letters must include full name, address and all phone numbers of sender (daytime, evening and cellphone).
CTV Canada AM am@ctv.caCTV News newsonline@ctv.caMail: P.O. Box 9, Station 'O,' Scarborough, ON M4A2M9Telephone: (416) 384-5000
Tuesday, June 16, 2009
Countdown for the cure
The cures are coming. They get closer and closer. They are real. They are coming. Breakthroughs will happen anytime now. They have stem cells. A lot of cures projected. They also have treatments now that can stop it. So much going on. So much hope for the future generations. HD will not get the generations anymore. We can stomp it out with cures. Plan your future. The future is now. No one else has to die. Believe in it. Believe in hope. Hope is all we have. Never lose sight of the big picture. Countdown for the cure is here and now. It is real. We are so close, the countdown gets closer. It draws nearer and nearer.
Blog: Coping with adversity
Some of the challenges we face cannot be easily "fixed" or remedied because of their complexity and the associated social, economic and health entanglements. So, what can we do?
As a hospice/end-of-life physician and medical oncologist, I often ask patients how they deal with some of these very difficult problems. A couple of themes emerge in their responses:
A sense of meaning and purpose. This is the reason you get up in the morning. It may be as simple as taking care of a loved one or pet.
A supportive community. In other words, feeling a connection to others. This is your family in the broadest sense, including that beloved dog or cat.
A focus on moving forward. Often expressed as, "Okay, I am not happy about what happened, so I need to make the best of this predicament." In other words, focusing on what you can learn from an experience and moving on.
Living in the moment. Embracing today and not looking too far down the road. After all, none of us can predict the future.
These tactics certainly seem to work for many patients. Are there other techniques that have helped you? Please share them with us.
Film to chronicle lawnmower-racing Sparta family
If you'd like to view the film's trailer go to
Donations both small and large alike are welcome to support the self funded documentary
Monday, June 15, 2009
Upset Tummy
I have been having trouble keeping food down. I am taking extra ensure to maintain my wight. We had a BBQ for the family. We spent the weekend with Alice. My family is going to come down for 4 days. I leave on the 27th. Yesterday Trevor was worried. I had a really sick day. I am getting more tied. It takes me a bit to get up. Unless I am volunteering. There is a program here where we can get Trevor to be my payed care giver. We are looking into it. This way, he can be at home. Get his Network Analyst CERTs or get his Care Aide certificate. He is a great care giver. I could not wish for a better man. We went for another hike. Every Sat we go for one. We love hiking, and so does Lucky. Accept the changes. We have to keep living. Life is what we make it.
Film to chronicle lawnmower-racing Sparta family
SPARTA, Mich. - A small-scale filmmaker is tracking a Sparta family's passion for lawnmower racing, hoping to raise awareness for Huntington's disease.
http://www.chicagotribune.com/news/chi-ap-mi-exchange-lawnmowe,0,2629729.story
http://www.chicagotribune.com/news/chi-ap-mi-exchange-lawnmowe,0,2629729.story
Sunday, June 14, 2009
90th Award!!!
I won another hard international award. It is my second HUGS R US Award. I have won more awards than any healthy person. You can all live out your dreams. Never stop believing. I did want to make my site award winning. 90 awards!!!
Friday, June 12, 2009
Transmission Of Huntington's Disease To Offspring Among Male Carriers: Risk Estimated By Researchers
Researchers from Boston University School of Medicine (BUSM) have quantified the probability of a male who carries a "high normal" variant of the Huntington's Disease (HD) gene having a child who develops the disease. Although thought to be a very rare event, the probability has never been estimated using current information and disease guidelines. The findings, appear on-line in the American Journal of Medical Genetics, may be useful during prenatal genetic counseling.
Family
I have my whole family coming in two weeks. I leave to go home on the 27th and my appointment with my Nero on the 30th. Go back. My Dad, Gary and maybe Scotto will come down. This is the first visit they have made here. They get to see our amazing disability condo. My outer ear infection stoped yesterday.Fight to be alive. Fight for your life. Do not ever give up. Don't give in. Don't let HD take you life away. Fight it. Take your life back. That is yours. Don't let it have that power. Don't fear it. Accept it, and change it. We can make our own destinies. We are in charge. We have life. We have hope. We have a future. We want these things. We got these things. Your life is worth it. Fight for it. Our life is on the line. Take it back.
Thursday, June 11, 2009
Hurting for Kitty
There is a townhouse next door that has a cat. They starve it and never let in in or take care of it. It is really skinny. My neighbors had been feeding it. It is not enough. It is not gaining weight. I think it has worms. I called PAWS, my animal shelter, and told them about this. They are looking for this poor cat now. After this, I snuggle with Princess and Lucky. I just don't understand why people treat their animals that way. It makes me sick. This is the third time I had to call a complaint here. After all of this, it makes me just want to spoil Princess and Lucky more. I had to save three cats from getting ran over on purpose here. I saw my dog ran over 10 times. No one stopped or cared. I did not want the people to lose their cats, and ran into the speeding cars and got them out of there. One of the owner's was very happy to have his cat. Someone poisoned my Dad and Karen's dog Zena. At my wedding they came home, someone feed her some antifreeze. I got happy news too. Alice is down this weekend and my Dad and Gary are coming down on two weeks. This is the first visit, since I have been here. My step sister Megan is having a Baby. I slide into 2 base, like a pro at Tee-Ball. I hurt myself. It is pretty funny. I was just to pro for the rest of them.
Positive thinking: Reduce stress, enjoy life more
Positive thinking: Reduce stress, enjoy life more
Positive thinking helps with stress management and can even improve your health. Overcome negative self-talk by recognizing it and practicing with some examples provided.
Respecting our limits
Many of our friends have children who are graduating, and they are kind enough to invite us to celebrate with them. Commencement speakers often proffer advice, but sometimes words of wisdom come from an unexpected source.
I recently sat next to a gentleman who reminded me of the importance of knowing our own limits. This person was a prominent television personality at a major Midwestern affiliate. He had been the anchor for an early morning news show and had to be in the studio at 4 a.m., which meant that he needed to rise at 3 a.m. each day. To get seven hours of sleep a night, he needed to go to bed by 8 p.m. He shared with me that he did not like that routine and thought he could have a social life like "normal people." Because he often participated in community activities, he routinely got only three or four hours of sleep a night.
You can predict what happened. His on-air performance deteriorated. The ratings — essential to advertisers — went downhill and he was dismissed from his position. All because he did not acknowledge his own limits.
During the professional basketball playoffs, we saw another situation where one team, the Los Angeles Lakers, was clearly fatigued after a tough schedule. They were playing the Denver Nuggets, a team that was well rested. Although the Lakers ultimately won the series, it was obvious that they were pushing the limits of their stamina and endurance.
We too need to remind ourselves that we only have so much energy in our battery. If we continue to drain it with demands and commitments, the battery goes dead. So, we need to respect our limits — physically and emotionally. We may have the best of intentions to do the right thing for friends and family, but if we exhaust ourselves everyone loses.
I recently sat next to a gentleman who reminded me of the importance of knowing our own limits. This person was a prominent television personality at a major Midwestern affiliate. He had been the anchor for an early morning news show and had to be in the studio at 4 a.m., which meant that he needed to rise at 3 a.m. each day. To get seven hours of sleep a night, he needed to go to bed by 8 p.m. He shared with me that he did not like that routine and thought he could have a social life like "normal people." Because he often participated in community activities, he routinely got only three or four hours of sleep a night.
You can predict what happened. His on-air performance deteriorated. The ratings — essential to advertisers — went downhill and he was dismissed from his position. All because he did not acknowledge his own limits.
During the professional basketball playoffs, we saw another situation where one team, the Los Angeles Lakers, was clearly fatigued after a tough schedule. They were playing the Denver Nuggets, a team that was well rested. Although the Lakers ultimately won the series, it was obvious that they were pushing the limits of their stamina and endurance.
We too need to remind ourselves that we only have so much energy in our battery. If we continue to drain it with demands and commitments, the battery goes dead. So, we need to respect our limits — physically and emotionally. We may have the best of intentions to do the right thing for friends and family, but if we exhaust ourselves everyone loses.
Respecting our limits
Many of our friends have children who are graduating, and they are kind enough to invite us to celebrate with them. Commencement speakers often proffer advice, but sometimes words of wisdom come from an unexpected source.
I recently sat next to a gentleman who reminded me of the importance of knowing our own limits. This person was a prominent television personality at a major Midwestern affiliate. He had been the anchor for an early morning news show and had to be in the studio at 4 a.m., which meant that he needed to rise at 3 a.m. each day. To get seven hours of sleep a night, he needed to go to bed by 8 p.m. He shared with me that he did not like that routine and thought he could have a social life like "normal people." Because he often participated in community activities, he routinely got only three or four hours of sleep a night.
You can predict what happened. His on-air performance deteriorated. The ratings — essential to advertisers — went downhill and he was dismissed from his position. All because he did not acknowledge his own limits.
During the professional basketball playoffs, we saw another situation where one team, the Los Angeles Lakers, was clearly fatigued after a tough schedule. They were playing the Denver Nuggets, a team that was well rested. Although the Lakers ultimately won the series, it was obvious that they were pushing the limits of their stamina and endurance.
We too need to remind ourselves that we only have so much energy in our battery. If we continue to drain it with demands and commitments, the battery goes dead. So, we need to respect our limits — physically and emotionally. We may have the best of intentions to do the right thing for friends and family, but if we exhaust ourselves everyone loses.
Mental health: Overcoming the stigma of mental illness
Progress is being made to remove the stigma of mental illness and mental health disorders. You can take positive steps to combat stigma. This could cover HD as well.
Stem Cell Bill/Genetic Information Nondiscrimination Act of 2007
ZIP CODE Senate/ House
http://www.votesmart.org/election_congress.php
http://www.votesmart.org/election_congress.php
Genetic Information Nondiscrimination Act of 2007
http://thomas.loc.gov/cgi-bin/query/z?c110:h.r.493:
Mental health benefits of omega-3 fatty acids may be mediated by improvements in cerebral vascular function
Mental health benefits of omega-3 fatty acids may be mediated by improvements in cerebral vascular function
Abstract
Since the pivotal role of long chain omega-3 (n-3) polyunsaturated fatty acids (PUFA) in brain structure and development became apparent in the 1970s, these lipids have been investigated in relation to a range of psychiatric disorders, with some positive and some conflicting evidence to support their use as a supplementary treatment for various symptoms. A number of mechanisms of action have been proposed to account for their potential benefits, largely based on their structural role in brain development and purported influences on central neurotransmission.
Theories on the pathogenesis of mental health and psychiatric illness have traditionally focused on the role of neurotransmitters, although there is also ample evidence that psychiatric disorders are associated with impaired cerebral blood flow (CBF) or impairments in blood-brain barrier (BBB) function. Associations between cardiovascular and psychiatric pathologies are further indicative of a possible underlying vascular component to psychiatric illness. We hypothesise that treatment with vasoactive nutrients that can improve cerebral perfusion may help to improve a variety of mental disorders.
In presenting our hypothesis, we provide an overview of cerebral vascular function, focusing specifically on the role of the endothelium in CBF and BBB integrity, and review evidence for associations between impaired CBF/endothelial function and psychiatric illness. Then, as an example of a potential treatment, we review the influence of n-3 PUFA on endothelial function, drawing on evidence of anti-inflammatory, anti-aggregatory and vasodilatory roles in blood flow and vascular permeability. We hypothesise that n-3 PUFA may act on the blood side of the BBB as well as on central neural pathways to influence cerebral functions. In the former case, they may act on endothelial cells to influence both vasodilation and selective permeability, thereby assisting in CBF and delivery of oxygen and glucose to brain tissue in response to requirements.
Abstract
Since the pivotal role of long chain omega-3 (n-3) polyunsaturated fatty acids (PUFA) in brain structure and development became apparent in the 1970s, these lipids have been investigated in relation to a range of psychiatric disorders, with some positive and some conflicting evidence to support their use as a supplementary treatment for various symptoms. A number of mechanisms of action have been proposed to account for their potential benefits, largely based on their structural role in brain development and purported influences on central neurotransmission.
Theories on the pathogenesis of mental health and psychiatric illness have traditionally focused on the role of neurotransmitters, although there is also ample evidence that psychiatric disorders are associated with impaired cerebral blood flow (CBF) or impairments in blood-brain barrier (BBB) function. Associations between cardiovascular and psychiatric pathologies are further indicative of a possible underlying vascular component to psychiatric illness. We hypothesise that treatment with vasoactive nutrients that can improve cerebral perfusion may help to improve a variety of mental disorders.
In presenting our hypothesis, we provide an overview of cerebral vascular function, focusing specifically on the role of the endothelium in CBF and BBB integrity, and review evidence for associations between impaired CBF/endothelial function and psychiatric illness. Then, as an example of a potential treatment, we review the influence of n-3 PUFA on endothelial function, drawing on evidence of anti-inflammatory, anti-aggregatory and vasodilatory roles in blood flow and vascular permeability. We hypothesise that n-3 PUFA may act on the blood side of the BBB as well as on central neural pathways to influence cerebral functions. In the former case, they may act on endothelial cells to influence both vasodilation and selective permeability, thereby assisting in CBF and delivery of oxygen and glucose to brain tissue in response to requirements.
Perceptions of genetic discrimination among people at risk
I filled out this study last year. They sent it to every HD family in Canada.
Tuesday, June 9, 2009
Ear Infection
I have an another ear infection. This time around it is an out ear infection. We went to emerge today and the Doctor was the person in charge of the Illumnaries! How ironic is that. I had it the day before the Relay. I hid it, I wanted to run and not give up. I kept on walking with it. I refused to give up. I told my Doctor that too. They cleaned my ears with Hydrogen Peroxide at emerg. Tonight Trevor will do it. If it does not get better, we go in tomorrow. This whole week I am dog sitting Princess Abby. I am in doggie heaven, having both of them around. When Princess was first here she hid. Now I can get her and Lucky to play all with one another. She is getting used to us. Don't lose site of that hope that is in front of us. It is there. Fight for it. We deserve hope. We deserve the best. Fight for it. Fight hard. This could all be ours, if we fight for it. We can be happy.
More Updates
I added a graphic where out can click and it takes you to a donation page for JHD. We need to help them. We need to help us. Help these kids out. There is hardly any research going on for them. Help make something happen.
Monday, June 8, 2009
Relay For Life
I had so much fun in the Relay For Life. It was a horrible day outside. Rainy, windy and cold. That kept people from coming. Three of the Special People could not do it, it was miserable. The Special team clocked in three hours and 20 laps. We were faster then the healthier people. We kept saying we are going to kick cancer's ass. My team left early. I came back at 3 with Trevor. We did an hour and a half extra and 5 more laps. The Illumtiaires was a candle lit vigil. There was so much candles for the dead there. It broke my heart. It was a nice place for my Grandma and Kaiden to be. We walked with candles and had a candle lit vigil. The wind kept tipping over the bags, with candles in them. I kept putting them back. That is not the way the dead should be. It was a beautiful ceremony. They read out the dead. It was beautiful with all of the candles set up.
Friday, June 5, 2009
Another International award
I got a International Nautical Yacht Nomminee Badge. It was another hard one to win.
Jion us
Healthy again. I can't wait for tomorrow. I am upset. Dr. Suckorsky's office has not contacted my Dad about the Creatine study. Me and Gary want to go. She never calls. The office is horrible. bBecome a Guinea Pig with me. We need cures. We need research. We have to take it upon ourselves to work with it. There are so many studies and so little people. Why can't it be different? We need to step and join. Learn and do them. Do the studies. Help save all of us. Be brave. Do something good for all of us. Step up. Own up. Bravery will be worth it. It Will all be worth. This is our chance to find out more. step up with me.
Scientists have solved a mystery surrounding a horrific illness
June 4, 2009 (WASHINGTON) -- Scientists have solved a mystery surrounding a horrific illness: Why people with Huntington's disease harbor a faulty protein throughout their bodies but it destroys only certain brain cells.
Thursday, June 4, 2009
Forgiveness
I have been healthy the past two days. I did not go to Gleaner's. My leg was hurting. If it is still hurt, I am going to do it anyway. I am not the person to give up and not fight. My neighbors got some Heather for my garden. They had to special order it in for me. It was great of them to get that for us. Never give up. Fight with me. We all are the same here. We are the sick, the family, the care givers. We know what this disease does or how it works. We know now that it is treatable. It is cureable. I show you hope. Fight by my side. We can't be separate. Get closer to your family. Loved ones. HD is not us. WE are people. We have feelings. Our hearts bleed,. We just want to be treated like you would any other person. Forgive and move on. Forgiveness is key to the healing process. We need to heal. We need to forgive yourself and other's. We can't control ourselves. Forgive and accept those changes. That is the real HD. It is real and raw. Forgive us. Love us. Befriend us Don't give up.
Majon Award Of Excellence
I got a New award.
It is hard for me to find new awards. I won them all. There is not much last. I just won one on the few I have not got before.
Coenzyme Q10 in Huntington's Disease (HD)
Coenzyme Q10 in Huntington's Disease (HD)
This study is currently recruiting participants.
Verified by National Institute of Neurological Disorders and Stroke (NINDS), January 2009
First Received: February 4, 2008 Last Updated: January 14, 2009
This study is currently recruiting participants.
Verified by National Institute of Neurological Disorders and Stroke (NINDS), January 2009
First Received: February 4, 2008 Last Updated: January 14, 2009
University of Rochester
Information provided by:
National Institute of Neurological Disorders and Stroke (NINDS)
ClinicalTrials.gov Identifier:
NCT00608881
Purpose
The goals of this trial are to determine if coenzyme Q10 is effective in slowing the worsening symptoms of Huntington's disease and to learn about the safety and acceptability of long-term coenzyme Q10 use by determining its effects on people with Huntington's disease.
Condition
Intervention
Phase
Huntington's Disease
Drug: coenzyme Q10Other: placebo
Phase III
Study Type:
Interventional
Study Design:
Treatment, Randomized, Double Blind (Subject, Caregiver, Investigator), Parallel Assignment, Efficacy Study
Official Title:
Coenzyme Q10 in Huntington's Disease (HD)
Further study details as provided by National Institute of Neurological Disorders and Stroke (NINDS):
Primary Outcome Measures:
Change in total functional capacity [ Time Frame: over 5 years ] [ Designated as safety issue: No ]
Secondary Outcome Measures:
Change in other UHDRS scores; Tolerability - proportion of subjects completing the study at the assigned dosage level; Safety - frequency of adverse events; Times to decline in TFC by 2 and 3 points [ Time Frame: duration of the trial ] [ Designated as safety issue: Yes ]
Estimated Enrollment:
608
Study Start Date:
March 2008
Estimated Study Completion Date:
April 2014
Estimated Primary Completion Date:
April 2014 (Final data collection date for primary outcome measure)
Arms
Assigned Interventions
A: Active Comparator
Randomized to active treatment (coenzyme Q10 2400 mg/day)
Drug: coenzyme Q10
4 - 300 mg CoQ chewable wafers taken orally twice a day
B: Placebo Comparator
Randomized to placebo
Other: placebo
an inactive substance Detailed Description:
Huntington's disease (HD) is a slowly progressive disorder that devastates the lives of those affected and their families. There are no treatments that slow the progression of HD, only mildly effective symptomatic therapies are available.
The purpose of this trial is to find out if coenzyme Q10 (CoQ) is effective in slowing the worsening symptoms of HD. In this study, researchers also will learn about the safety and acceptability of long-term CoQ use by determining its effects on people with HD.
Participants in this trial will be randomly chosen to one of two groups. Group 1 will receive CoQ (2400 mg/day), and group 2 will receive a placebo (an inactive substance). Researchers will compare the change in total functional capacity (TFC)—a measure of functional disability—in the two groups. The TFC is a valid and reliable measure of disease progression and is particularly responsive to change in the early and mid-stages of HD. Researchers will also compare the changes in other components of the Unified Huntington's Disease Rating Scale '99 (UHDRS) including: the total motor score, total behavioral frequency score, total behavior frequency X severity score, verbal fluency test, symbol digit modalities test, Stroop, interference test, functional checklist, and independence scale scores. The groups will also be compared with respect to tolerability, adverse events, vital signs, and laboratory test results as measures of safety.
Eligibility
Ages Eligible for Study:
16 Years and older
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
To be eligible for enrollment into this study, subjects must meet the following eligibility criteria within 28 days prior to randomization:
Subjects must have clinical features of HD and a confirmed family history of HD, OR a CAG repeat expansion ≥ 36.
TFC > 9.
Must be ambulatory and not require skilled nursing care.
Age ≥ 16 years.
Women must not be able to become pregnant (e.g., post menopausal, surgically sterile or using adequate birth control methods for the duration of the study).
If psychotropic medications are taken (e.g., anxiolytics, hypnotics, benzodiazepines, antidepressants), they must be at a stable dosage for four weeks prior to randomization and should be maintained at a constant dosage throughout the study, as possible. Any changes to these medications mandated by clinical conditions will be systematically recorded and the subject will be permitted to remain in the trial.
Able to give informed consent and comply with trial procedures
Able to take oral medication.
Able to identify an informant or caregiver who will be willing and able to supervise the daily dosing of study medications and to maintain control of study medications in the home.
A designated individual will be identified by the subject to participate in the ongoing consent process should the subject's cognitive capacity to consent become compromised during participation in the study.
Exclusion Criteria:
History or known sensitivity of intolerability to CoQ.
Exposure to any investigational drug within 30 days of the Baseline visit.
Clinical evidence of unstable medical illness in the investigator's judgment.
Unstable psychiatric illness defined as psychosis (hallucinations or delusions), untreated major depression or suicidal ideation within 90 days of the Baseline visit.
Substance (alcohol or drug) abuse within one year of the Baseline visit.
Women who are pregnant or breastfeeding.
Use of supplemental coenzyme Q10 within 120 days prior to the Baseline visit
Clinically serious abnormalities in the screening laboratory studies (Screening creatinine greater than 2.0, alanine aminotransferase (ALT) or total bilirubin greater than 3 times the upper limit of normal, absolute neutrophil count of ≤1000/ul, platelet concentration of <100,000/ul,> 1.5 time upper limit of normal).
Known allergy to FD&C yellow #5 or any other ingredient in the study drug (active and placebo)
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00608881
Contacts
Contact: Huntington Study Group
1-800-487-7671
Show 43 Study Locations
Sponsors and Collaborators
Massachusetts General Hospital
National Institute of Neurological Disorders and Stroke (NINDS)
University of Rochester
Investigators
Principal Investigator:
Merit Cudkowicz, MD MSc
Massachusetts General Hospital
Principal Investigator:
Michael McDermott, PhD
University of Rochester, Biostatistics
Principal Investigator:
Karl Kieburtz, MD MPH
Director, Clinical Trials Coordination Center, University of Rochester
Information provided by:
National Institute of Neurological Disorders and Stroke (NINDS)
ClinicalTrials.gov Identifier:
NCT00608881
Purpose
The goals of this trial are to determine if coenzyme Q10 is effective in slowing the worsening symptoms of Huntington's disease and to learn about the safety and acceptability of long-term coenzyme Q10 use by determining its effects on people with Huntington's disease.
Condition
Intervention
Phase
Huntington's Disease
Drug: coenzyme Q10Other: placebo
Phase III
Study Type:
Interventional
Study Design:
Treatment, Randomized, Double Blind (Subject, Caregiver, Investigator), Parallel Assignment, Efficacy Study
Official Title:
Coenzyme Q10 in Huntington's Disease (HD)
Further study details as provided by National Institute of Neurological Disorders and Stroke (NINDS):
Primary Outcome Measures:
Change in total functional capacity [ Time Frame: over 5 years ] [ Designated as safety issue: No ]
Secondary Outcome Measures:
Change in other UHDRS scores; Tolerability - proportion of subjects completing the study at the assigned dosage level; Safety - frequency of adverse events; Times to decline in TFC by 2 and 3 points [ Time Frame: duration of the trial ] [ Designated as safety issue: Yes ]
Estimated Enrollment:
608
Study Start Date:
March 2008
Estimated Study Completion Date:
April 2014
Estimated Primary Completion Date:
April 2014 (Final data collection date for primary outcome measure)
Arms
Assigned Interventions
A: Active Comparator
Randomized to active treatment (coenzyme Q10 2400 mg/day)
Drug: coenzyme Q10
4 - 300 mg CoQ chewable wafers taken orally twice a day
B: Placebo Comparator
Randomized to placebo
Other: placebo
an inactive substance Detailed Description:
Huntington's disease (HD) is a slowly progressive disorder that devastates the lives of those affected and their families. There are no treatments that slow the progression of HD, only mildly effective symptomatic therapies are available.
The purpose of this trial is to find out if coenzyme Q10 (CoQ) is effective in slowing the worsening symptoms of HD. In this study, researchers also will learn about the safety and acceptability of long-term CoQ use by determining its effects on people with HD.
Participants in this trial will be randomly chosen to one of two groups. Group 1 will receive CoQ (2400 mg/day), and group 2 will receive a placebo (an inactive substance). Researchers will compare the change in total functional capacity (TFC)—a measure of functional disability—in the two groups. The TFC is a valid and reliable measure of disease progression and is particularly responsive to change in the early and mid-stages of HD. Researchers will also compare the changes in other components of the Unified Huntington's Disease Rating Scale '99 (UHDRS) including: the total motor score, total behavioral frequency score, total behavior frequency X severity score, verbal fluency test, symbol digit modalities test, Stroop, interference test, functional checklist, and independence scale scores. The groups will also be compared with respect to tolerability, adverse events, vital signs, and laboratory test results as measures of safety.
Eligibility
Ages Eligible for Study:
16 Years and older
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
To be eligible for enrollment into this study, subjects must meet the following eligibility criteria within 28 days prior to randomization:
Subjects must have clinical features of HD and a confirmed family history of HD, OR a CAG repeat expansion ≥ 36.
TFC > 9.
Must be ambulatory and not require skilled nursing care.
Age ≥ 16 years.
Women must not be able to become pregnant (e.g., post menopausal, surgically sterile or using adequate birth control methods for the duration of the study).
If psychotropic medications are taken (e.g., anxiolytics, hypnotics, benzodiazepines, antidepressants), they must be at a stable dosage for four weeks prior to randomization and should be maintained at a constant dosage throughout the study, as possible. Any changes to these medications mandated by clinical conditions will be systematically recorded and the subject will be permitted to remain in the trial.
Able to give informed consent and comply with trial procedures
Able to take oral medication.
Able to identify an informant or caregiver who will be willing and able to supervise the daily dosing of study medications and to maintain control of study medications in the home.
A designated individual will be identified by the subject to participate in the ongoing consent process should the subject's cognitive capacity to consent become compromised during participation in the study.
Exclusion Criteria:
History or known sensitivity of intolerability to CoQ.
Exposure to any investigational drug within 30 days of the Baseline visit.
Clinical evidence of unstable medical illness in the investigator's judgment.
Unstable psychiatric illness defined as psychosis (hallucinations or delusions), untreated major depression or suicidal ideation within 90 days of the Baseline visit.
Substance (alcohol or drug) abuse within one year of the Baseline visit.
Women who are pregnant or breastfeeding.
Use of supplemental coenzyme Q10 within 120 days prior to the Baseline visit
Clinically serious abnormalities in the screening laboratory studies (Screening creatinine greater than 2.0, alanine aminotransferase (ALT) or total bilirubin greater than 3 times the upper limit of normal, absolute neutrophil count of ≤1000/ul, platelet concentration of <100,000/ul,> 1.5 time upper limit of normal).
Known allergy to FD&C yellow #5 or any other ingredient in the study drug (active and placebo)
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00608881
Contacts
Contact: Huntington Study Group
1-800-487-7671
Show 43 Study Locations
Sponsors and Collaborators
Massachusetts General Hospital
National Institute of Neurological Disorders and Stroke (NINDS)
University of Rochester
Investigators
Principal Investigator:
Merit Cudkowicz, MD MSc
Massachusetts General Hospital
Principal Investigator:
Michael McDermott, PhD
University of Rochester, Biostatistics
Principal Investigator:
Karl Kieburtz, MD MPH
Director, Clinical Trials Coordination Center, University of Rochester
Deep Brain Stimulation of the Globus Pallidus in Huntington's Disease
Deep Brain Stimulation of the Globus Pallidus in Huntington's Disease
This study is currently recruiting participants.
Verified by Heinrich-Heine University, Duesseldorf, January 2009
First Received: May 14, 2009 No Changes Posted
Sponsored by:
Heinrich-Heine University, Duesseldorf
Information provided by:
Heinrich-Heine University, Duesseldorf
ClinicalTrials.gov Identifier:
NCT00902889
Purpose
This is a single centre, controlled phase I study, which evaluates safety and efficacy of stimulation of lower caudal two contacts (GPI) vs. upper cranial two contacts (GPE) in Huntington´s disease (HD).
Condition
Intervention
Phase
Huntington's Disease
Procedure: Stimulation
Phase I
Interventional
Study Design:
Treatment, Randomized, Open Label, Active Control, Crossover Assignment, Safety/Efficacy Study
Official Title:
Single Centre (Pilot) Study for Deep Brain Stimulation (DBS) of the Globus Pallidus in Huntington's Disease (HD)
Further study details as provided by Heinrich-Heine University, Duesseldorf:
Primary Outcome Measures:
Efficacy of stimulation of GPI versus GPR (UHDRS Scale) [ Time Frame: 3 months after stimulation treatment ] [ Designated as safety issue: Yes ]
Secondary Outcome Measures:
Effect of treatment on cognitive functions (neuropsychological tests) [ Time Frame: 3 months after stimulation treatment ] [ Designated as safety issue: No ]
Effects of treatment on electrophysiological tests [ Time Frame: 3 months after stimulation treatment ] [ Designated as safety issue: No ]
Effects of treatment on functional scale (functional ability, dependence scale, TFC) [ Time Frame: 3 months after stimulation treatment ] [ Designated as safety issue: No ]
Progression of disease (motor UHDRS) [ Time Frame: 12 months after stimulation treatment ] [ Designated as safety issue: No ]
Effect of treatment on striatal atrophy (CT Scans) [ Time Frame: 3 months after stimulation treatment ] [ Designated as safety issue: No ]
Estimated Enrollment:
6
Study Start Date:
May 2009
Estimated Study Completion Date:
April 2011
Estimated Primary Completion Date:
April 2010 (Final data collection date for primary outcome measure)
Arms
Assigned Interventions
1: Experimental
6 weeks stimulation with GPI (lower caudal two contacts), 4 weeks wash-out, 6 weeks stimulation with GPE (upper cranial two contacts).
Procedure: Stimulation
6 weeks stimulation with GPI (lower caudal two contacts), 4 weeks wash-out, 6 weeks stimulation GPE (upper cranial two contacts)
2: Experimental
6 weeks stimulation with GPE (upper cranial two contacts), 4 weeks wash-out, 6 weeks stimulation with GPI (lower caudal two contacts)
Procedure: Stimulation
6 weeks stimulation with GPE (upper cranial two contacts), 4 weeks wash-out, 6 weeks stimulation with GPI (lower caudal two contacts) Detailed Description:
A total of 6 HD patients will be selected out of an existing larger HD patient cohort upon careful evaluation of the inclusion and exclusion criteria at month 0. Patients will be recruited if no significant cognitive deterioration is observed between month 0 and month 3. The preoperative clinical status will be evaluated twice including the United Huntington Disease Rating Scale (UHDRS), neuropsychological, neurophysiologic and neuroradiological assessments. At 4 weeks postoperatively an extensive evaluation of effects and side effects of every single contact of the bilateral quadripolar electrodes takes place.
All patients will receive a stereotactic placement of bilateral stereotactic insertion of two quadripolar electrodes into the Globus pallidus, two contacts reaching the GPE, two the GPI within both hemispheres. Surgery will be done under general anesthesia, The implantation of the stimulator (Kintera®) will take place in the same procedure. Postoperatively patients will be monitored at three and six months and regularly up to 60 months with a battery of clinical, neuropsychological, psychiatric, neurophysiological and neuroimaging tests.
We expect that this trial will provide a rational basis to conclude about the efficacy, safety, reproducibility and long-term effects of pallidal Deep Brain Stimulation (DBS) on motor symptoms of HD.
Eligibility
Ages Eligible for Study:
18 Years and older
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
clinically symptomatic and genetically confirmed Huntington Disease (number of CAG repeats>= 36)
age: > 18
moderate stage of the disease (UHDRS motor>= 30)
predominant movement disorder
compliance of the patient, stable cognition during a 6 months phase prior to inclusion (MDS>/= 120)
signed informed consent
Exclusion Criteria:
advanced disease, precluding the ability to give informed consent
very early stage of disease causing minor disability
severe comorbidity that could compromise the life prognostic or preclude general anaesthesia or immunosuppression
Mattis Dementia Rating Scale < 120
psychiatric or personality disturbances that might compromise the follow-up
participation at another trial (in particular transplantation)
severe cortical atrophy seen on CT and MRI
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00902889
Contacts
Contact: Jan Vesper, Prof. Dr.
0049 211 8118408
jan.vesper@uniklinik-duesseldorf.de
Contact: Alfons Schnitzler, Prof. Dr.
0049 211 8117893
SchnitzA@med.uni-duesseldorf.de
Locations
Germany, NW
Functional Neurosurgery and Stereotaxy, Department of Neurosurgery University Hospital Duesseldorf
Recruiting
Duesseldorf, NW, Germany, 40225
Contact: Jan Vesper, Prof. Dr. 0049 221 8118408
jan.vesper@uniklinik-duesseldorf.de
Contact: Alfons Schnitzler, Prof. Dr. 0049 221 8117893
Contact: Alfons Schnitzler, Prof. Dr. 0049 221 8117893
SchnitzA@med.uni-duesseldorf.de
Principal Investigator: Jan Vester, Prof. Dr.
Sub-Investigator: Alfons Schnitzler, Prof. Dr.
Sponsors and Collaborators
Heinrich-Heine University, Duesseldorf
Investigators
Principal Investigator:
Jan Vesper, Prof. Dr.
Functional Neurosurgery and Stereotaxy, Department of Neurosurgery
More Information
Publications:
Temel Y, Cao C, Vlamings R, Blokland A, Ozen H, Steinbusch HW, Michelsen KA, von Hörsten S, Schmitz C, Visser-Vandewalle V. Motor and cognitive improvement by deep brain stimulation in a transgenic rat model of Huntington's disease. Neurosci Lett. 2006 Oct 2;406(1-2):138-41. Epub 2006 Aug 14.
Responsible Party:
Heinrich Heine University, Duesseldorf, Functional Neurosurgery and Stereotaxy, Department of Neurosurgery ( Prof. Dr. Jan Vesper )
Study ID Numbers:
Huntington
Study First Received:
May 14, 2009
Last Updated:
May 14, 2009
ClinicalTrials.gov Identifier:
NCT00902889
Principal Investigator: Jan Vester, Prof. Dr.
Sub-Investigator: Alfons Schnitzler, Prof. Dr.
Sponsors and Collaborators
Heinrich-Heine University, Duesseldorf
Investigators
Principal Investigator:
Jan Vesper, Prof. Dr.
Functional Neurosurgery and Stereotaxy, Department of Neurosurgery
More Information
Publications:
Temel Y, Cao C, Vlamings R, Blokland A, Ozen H, Steinbusch HW, Michelsen KA, von Hörsten S, Schmitz C, Visser-Vandewalle V. Motor and cognitive improvement by deep brain stimulation in a transgenic rat model of Huntington's disease. Neurosci Lett. 2006 Oct 2;406(1-2):138-41. Epub 2006 Aug 14.
Responsible Party:
Heinrich Heine University, Duesseldorf, Functional Neurosurgery and Stereotaxy, Department of Neurosurgery ( Prof. Dr. Jan Vesper )
Study ID Numbers:
Huntington
Study First Received:
May 14, 2009
Last Updated:
May 14, 2009
ClinicalTrials.gov Identifier:
NCT00902889
History of Changes
Health Authority:
Germany: Ethics CommissionKeywords provided by Heinrich-Heine University, Duesseldorf:
Globus pallidusHuntington's DiseaseDeep Brain StimulationMovement Disorders
Health Authority:
Germany: Ethics CommissionKeywords provided by Heinrich-Heine University, Duesseldorf:
Globus pallidusHuntington's DiseaseDeep Brain StimulationMovement Disorders
UK HD Events
June 2009
8th - 14th
HD Awareness Week - A series of national and local events will take place during our Awareness Week this year. Please check our online calendar in the lead up to Awareness Week for more information.
8th - 14th
HD Awareness Week - A series of national and local events will take place during our Awareness Week this year. Please check our online calendar in the lead up to Awareness Week for more information.
8th
An Inspirational Approach To Huntington’s Disease - With guest speaker Jim Pollard. Directory of Social Change, 24 Stephenson Way, London, NW1 2DP. 10.30am to 4.00pm -
9th
Palliative Care in Huntington’s Disease - Professional Study Day. To be held at The Kings Fund, 11-13 Cavendish Square, London, W1G 0AN -
Huntington’s Disease Family Day - The aim of the day is to provide people affected by Huntington’s disease with an opportunity to meet each other and to help them gain information. To be held at PJ Care, 1 Sherwood Place, 153, Sherwood Drive, Bletchley, Milton Keynes, MK3 6RT -
July/August 2009
17th - 19th31st - 2nd
HDA Activity Weekends
Avon Tyrrell Activity Centre, New ForestMepal Outdoor Centre, CambridgeshireLledar Hall Outdoor Education Centre, North Wales
Sign up early to take part in our Activity Weekends during 2009, for children aged 9 to 16 years - download booking form
October 2009
2nd - 4th
HDA Annual General Meeting and Family Conference weekend
The AGM and Family Conference will take place at the Park Inn Hotel, Telford, Shropshire. More information and a booking form will be sent out with our June 2009 newsletter and will be available to download from our website from mid-June onwards.
Wednesday, June 3, 2009
Dad and brother visting
My Dad and Brother are coming down after my Nero appt. We have that on the 30 th of June. Gary will come back for a week. My Dad will come, stay, and pick Gary up. Today I pulled a muscle doing Tee Ball. They did not do a warm up and my leg got pulled. I am still hoping to Relay for Life. Even if I am sore. I will still do it. I will never give up. never give up either. Do what you want. Do not let anything get in your way. Achieve your dreams. Anything is possible. Just set your eyes and achieve.
Effects of Music Therapy on Huntington's Disease
Effects of Music Therapy on Huntington's Disease
This study is currently recruiting participants.
Verified by University of Rochester, September 2005
First Received: September 12, 2005 Last Updated: April 14, 2006
This study is currently recruiting participants.
Verified by University of Rochester, September 2005
First Received: September 12, 2005 Last Updated: April 14, 2006
History of Changes
Sponsored by:
University of Rochester
Information provided by:
University of Rochester
ClinicalTrials.gov Identifier:
NCT00178360
Purpose
The purpose of this study is primarily to assess the ability of a music therapy program to improve holistically the psychological, somatic, and social symptoms of patients with Huntington ’s disease (HD). We hope to demonstrate the benefits of applying music therapy interventions to the management methods of HD, thus paving the way for the development of an effective music therapy program for individuals with HD.
Condition
Intervention
Phase
Huntington's Disease
Behavioral: Music Therapy
Phase I
Genetics Home Reference related topics: chorea-acanthocytosis familial paroxysmal nonkinesigenic dyskinesia Huntington disease McLeod neuroacanthocytosis syndrome
MedlinePlus related topics: Huntington's Disease Hurricanes
U.S. FDA Resources
Study Type:
Interventional
Study Design:
Educational/Counseling/Training, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Efficacy Study
Official Title:
The Effects of Music Therapy on Depression, Chorea and Other Symptoms of Huntington's Disease
Further study details as provided by University of Rochester:
Primary Outcome Measures:
To examine the feasibility and tolerability of a treatment program of MT for subjects with HD.
Secondary Outcome Measures:
To determine if MT improves the mood and motor features of HD while improving quality of life.
Estimated Enrollment:
25
Study Start Date:
July 2004
Estimated Study Completion Date:
July 2005Detailed Description:
ABSTRACT
Background: Recent studies show that music therapy helps improve the symptomatic manifestations of Parkinson’s Disease. Few studies have looked at music therapy as a treatment for the psychiatric, cognitive and motor symptoms of patients with Huntington’s disease (HD).
Objective: To examine the feasibility and tolerability of a treatment program of music therapy for patients with Huntington’s disease. Also, to determine if music therapy improves the mood and motor features of HD while improving quality of life.
Methods: Subjects with HD were recruited to participate in a six-week study that included one individual, half-hour music therapy session and one hour-long group session per week. The music therapy protocols were adapted from the Colorado State University’s Neurological Music Therapy program and were targeted to HD symptoms including balance and posture, fine motor skills, memory and attention, vocalizations, and mood. In particular the protocols included Rhythmic Auditory Stimulation (RAS), Pattern Sensory Enhancement (PSE), and Therapeutic Instrumental Music Playing (TIMP). Primary outcome of tolerability was to be assessed by the subjects’ adherence to the therapeutic protocol, attendance, and the results of an exit survey inquiring about their feelings toward the use of music therapy in HD. A secondary outcome of the study was the change in the Unified Huntington’s Disease Rating Scale (UHDRS) score between baseline and study completion.
Results: Five subjects were recruited for study participation (one female and four males). Music therapy was found to be a tolerable and feasible treatment for patients with HD (100% adherence and 98% attendance). Exit surveys demonstrated strongly positive feelings towards the music therapy treatment program in four of the five subjects (one survey was completed with contradictory answers by the subject). While there was improvement in UHDRS scores for finger tapping, pronation/supination and the Luria, these changes did not achieve statistical significance with the small sample size in this study.
Conclusions: Music therapy was well tolerated among subjects with HD in this small study. Future studies are now being planned to look at the efficacy of this intervention in a larger population of HD subjects.
Eligibility
Ages Eligible for Study:
18 Years and older
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
Diagnosis of HD
Over the age of 18
Patients must be ambulatory, use of a walker or human support is acceptable
Patients must be able to communicate their thoughts and feelings
Exclusion Criteria:
Anyone without the preceding characteristics
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00178360
Contacts
Contact: Rosemary Oliva, BM
585-273-2098
mailto:Rosemary_Oliva%40urmc.rochester.edu?subject=NCT00178360,
Contact: Olle Jane Z Sahler, MD
585-275-3935
mailto:OJ_Sahler%40urmc.rochester.edu?subject=NCT00178360,
Locations
United States, New York
University of Rochester Medical Center
Recruiting
Rochester, New York, United States, 14642
Contact: Olle Jane Z Sahler, MD 585-275-3935 mailto:OJ_Sahler%40urmc.rochester.edu?subject=NCT00178360,
Contact: Rosemary Oliva, BM 585-273-2098 mailto:Rosemary_Oliva%40urmc.rochester.edu?subject=NCT00178360,
Sub-Investigator: Bryan C Hunter, PhD
Sub-Investigator: H. Christopher Hyson, MD
Sub-Investigator: Rosemary Oliva, BM
Sub-Investigator: Kori A LaDonna, BA
Sponsors and Collaborators
University of Rochester
Investigators
Principal Investigator:
Olle Jane Z Sahler, MD
University of Rochester
More Information
Additional Information:
American Music Therapy Association Home Page
Huntington's Disease Society of America Home Page
Huntington's Disease Society of America - Upstate New York Chapter Home Page No publications provided
Study ID Numbers:
10336
Study First Received:
September 12, 2005
Last Updated:
April 14, 2006
ClinicalTrials.gov Identifier:
NCT00178360
Sponsored by:
University of Rochester
Information provided by:
University of Rochester
ClinicalTrials.gov Identifier:
NCT00178360
Purpose
The purpose of this study is primarily to assess the ability of a music therapy program to improve holistically the psychological, somatic, and social symptoms of patients with Huntington ’s disease (HD). We hope to demonstrate the benefits of applying music therapy interventions to the management methods of HD, thus paving the way for the development of an effective music therapy program for individuals with HD.
Condition
Intervention
Phase
Huntington's Disease
Behavioral: Music Therapy
Phase I
Genetics Home Reference related topics: chorea-acanthocytosis familial paroxysmal nonkinesigenic dyskinesia Huntington disease McLeod neuroacanthocytosis syndrome
MedlinePlus related topics: Huntington's Disease Hurricanes
U.S. FDA Resources
Study Type:
Interventional
Study Design:
Educational/Counseling/Training, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Efficacy Study
Official Title:
The Effects of Music Therapy on Depression, Chorea and Other Symptoms of Huntington's Disease
Further study details as provided by University of Rochester:
Primary Outcome Measures:
To examine the feasibility and tolerability of a treatment program of MT for subjects with HD.
Secondary Outcome Measures:
To determine if MT improves the mood and motor features of HD while improving quality of life.
Estimated Enrollment:
25
Study Start Date:
July 2004
Estimated Study Completion Date:
July 2005Detailed Description:
ABSTRACT
Background: Recent studies show that music therapy helps improve the symptomatic manifestations of Parkinson’s Disease. Few studies have looked at music therapy as a treatment for the psychiatric, cognitive and motor symptoms of patients with Huntington’s disease (HD).
Objective: To examine the feasibility and tolerability of a treatment program of music therapy for patients with Huntington’s disease. Also, to determine if music therapy improves the mood and motor features of HD while improving quality of life.
Methods: Subjects with HD were recruited to participate in a six-week study that included one individual, half-hour music therapy session and one hour-long group session per week. The music therapy protocols were adapted from the Colorado State University’s Neurological Music Therapy program and were targeted to HD symptoms including balance and posture, fine motor skills, memory and attention, vocalizations, and mood. In particular the protocols included Rhythmic Auditory Stimulation (RAS), Pattern Sensory Enhancement (PSE), and Therapeutic Instrumental Music Playing (TIMP). Primary outcome of tolerability was to be assessed by the subjects’ adherence to the therapeutic protocol, attendance, and the results of an exit survey inquiring about their feelings toward the use of music therapy in HD. A secondary outcome of the study was the change in the Unified Huntington’s Disease Rating Scale (UHDRS) score between baseline and study completion.
Results: Five subjects were recruited for study participation (one female and four males). Music therapy was found to be a tolerable and feasible treatment for patients with HD (100% adherence and 98% attendance). Exit surveys demonstrated strongly positive feelings towards the music therapy treatment program in four of the five subjects (one survey was completed with contradictory answers by the subject). While there was improvement in UHDRS scores for finger tapping, pronation/supination and the Luria, these changes did not achieve statistical significance with the small sample size in this study.
Conclusions: Music therapy was well tolerated among subjects with HD in this small study. Future studies are now being planned to look at the efficacy of this intervention in a larger population of HD subjects.
Eligibility
Ages Eligible for Study:
18 Years and older
Genders Eligible for Study:
Both
Accepts Healthy Volunteers:
No
Criteria
Inclusion Criteria:
Diagnosis of HD
Over the age of 18
Patients must be ambulatory, use of a walker or human support is acceptable
Patients must be able to communicate their thoughts and feelings
Exclusion Criteria:
Anyone without the preceding characteristics
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00178360
Contacts
Contact: Rosemary Oliva, BM
585-273-2098
mailto:Rosemary_Oliva%40urmc.rochester.edu?subject=NCT00178360,
Contact: Olle Jane Z Sahler, MD
585-275-3935
mailto:OJ_Sahler%40urmc.rochester.edu?subject=NCT00178360,
Locations
United States, New York
University of Rochester Medical Center
Recruiting
Rochester, New York, United States, 14642
Contact: Olle Jane Z Sahler, MD 585-275-3935 mailto:OJ_Sahler%40urmc.rochester.edu?subject=NCT00178360,
Contact: Rosemary Oliva, BM 585-273-2098 mailto:Rosemary_Oliva%40urmc.rochester.edu?subject=NCT00178360,
Sub-Investigator: Bryan C Hunter, PhD
Sub-Investigator: H. Christopher Hyson, MD
Sub-Investigator: Rosemary Oliva, BM
Sub-Investigator: Kori A LaDonna, BA
Sponsors and Collaborators
University of Rochester
Investigators
Principal Investigator:
Olle Jane Z Sahler, MD
University of Rochester
More Information
Additional Information:
American Music Therapy Association Home Page
Huntington's Disease Society of America Home Page
Huntington's Disease Society of America - Upstate New York Chapter Home Page No publications provided
Study ID Numbers:
10336
Study First Received:
September 12, 2005
Last Updated:
April 14, 2006
ClinicalTrials.gov Identifier:
NCT00178360
Keywords provided by University of Rochester:
Huntington's Disease, Music Therapy, quality of life
Huntington's Disease, Music Therapy, quality of life
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