Live Life

Live life. Be free. Don't let HD throw you down. Fight. Fight with all of your might. Fight with all of your strength. Fight and live. Don't HD tear you down. Live your life. You have the control. You have the wheels of your life. Drive away. Don't look back. Live your life. Make a future. Make a future for yourself. Don't let HD tear you part. make your own life. make it great. Live it great. Life should always be worth it.

More Updates

I updated my HD info page.

Mindfulness — Embrace the moment and reduce stress

In this blog we often talk about how to deal with the incredible onslaught of pressures, expectations and demands we face every day. Many readers practice a technique called "mindfulness."

Mindfulness is staying focused, engaged and completely absorbed in the task at hand. It means staying in the moment and not being distracted by phone calls or emails — or worries about the past or future.

I recently experienced mindfulness in a way that may be different from what you picture when you hear that term. I had the opportunity to address a group of professionals on issues of health and wellness. These were high-octane performers, and they had committed to spending 90 minutes with me. I did not want them to regret that decision.

I was totally absorbed in trying to meet the audience's needs. I did not let myself become distracted by worrying about the clock or jumping ahead to what I had to do at work later that day. I knew that I could not afford to lose focus. The 90 minutes flew by in the wink of any eye. And I think — at least I hope — that I met my listeners' needs.

Please share your examples of total engagement and mindfulness. We are all seekers, and we learn from each other.

Clinical trials: A chance to try evolving therapies

Clinical trials offer you a chance to try new treatments. Should you participate in a clinical trial? Learn more about how clinical trials work. Do them with my family.

http://www.mayoclinic.com/health/clinical-trials/DI00033

Disabilty/How to stay Healthy

My dad is thinking that we should try CCP. They told us that we could not get it. I had to work two years. I was two month short. We even had Parliament people telling us it is not Federal, even though it is. My Dad said Gary and Mom worked less then I did. and Dad got both of them on it. he told us to send it to Ottawa and hopefully we can get it. I went to shool twice. So I have that space. My Mom could never use her Sectary Degree. She got sick at 20. At 28 she got diagnosed. When she was 24 and Scott was born, she got sicker. i did not get sick until I was 23. I lasted long because of my lifestyle. I am straight edge. No drugs or alcohol. I always have been active too. Do that and you can slow it down.

Help an HD family

It's wonderful that the UK's Huntington's Disease Association normally can help HD families have a holiday but with donations down, they're unable to help this family this year. If there there is anyone from the UK who wants to help....the contact info at the bottom of the article! Husband bids to take wife on a final holiday

http://www.keighleynews.co.uk/news/4469332.Husband_bids_to_take_wife_on_a_final_holiday/By

Lisa Campbell A loving husband whose wife is in the last stages of Huntington's Disease has launched a desperate appeal for donations so he can take her on what could be her final holiday. Trevor Bailey, who cares for his 48-year-old wife Dawn, wants to raise enough money to take her away for a week of respite to Blackpool - where they courted after first meeting more than 17 years ago.Usually the Huntington's Disease Association (HDA) manages to source enough cash for the couple to stay in a disability-friendly hotel for a week in August with two carers but this year the economic downturn has hit hard and the charity cannot find a £290 shortfall. Mr Bailey, who gave up his job as a gas fire parts inspector to look after his wife, said that taking Dawn along the beach front was "the only thing that puts a smile on her face". He said: "We have been to Blackpool for the past four years and we look forward to it, it is a change of scenery from looking at these four walls and we really need the break. There is a different atmosphere and people to talk to and we go around the amusements and watch people go on the rides at the Pleasure Beach. "I do everything for Dawn, who is bed-ridden, and I help the carers. She is fed through a tube and we need carers when we go away in case anything happens during the night. We usually cannot plan anything because we do not know what is going to happen but we really get a lot out of this one break a year." Dawn, who lives at Redcliffe Street, in Keighley, and used to be a dinner lady at St Andrew's School in the town, was diagnosed with Huntington's Disease on her 36th birthday. Her mother had died of it and because of this she took the decision never to have children of her own. Mr Bailey is currently writing to organisations appealing for financial help to make a trip to Blackpool happen for his beloved Dawn. Keighley Rotary Club has already donated some funds. Peter Burns, regional care advisor for HAD, said: "This year I haven't succeeded in getting the full amount for Trevor to take his wife on respite to Blackpool for one week, where they used to court, so they can remiss on old times. I have always succeeded in getting the full amount before but it is really hard work this year because of the credit crunch. I am lucky if I get half the amount I usually get from charities this year. "The unfortunate thing about Mrs Bailey is she is bedridden, but she does love Blackpool life. It would just be such a shame for Dawn if she could not go to Blackpool this year, which might be her last time, for the sake of £290."

If anyone can help, contact Mr Bailey

on 07855 151589

or Mr Burns on 0151 298 3298,

e-mail info@had.org.uk.