Metoclopramide [Reglan] drugs

It won't be surprising for some HD families to read about the February 2009 FDA's black box label requirement for Metoclopramide [Reglan] drugs because of the potential of Tardive Dyskinesia in long term use. If you read the drug's info, three of the conditions listed for people who shouldn't take Reglan are those with a: history of depression, Parkinson's disease or a movement disorder and epilepsy or other seizure disorders. Yet this drug is prescribed by physicians for HD patients who experience stomach problems [GERD], projectile vomiting, the healing of esophageal ulcers, intractable hiccups, etc. Many HD patients who have been prescribed Reglan have experienced not only symptoms of NMS and/or TD but hallucinations, paranoia, suicidal thoughts, severe anger outbursts etc.. Because of this, every time I hear of someone being prescribed Reglan I send them to the information on the link below the news article. Metoclopramide brand names: Octamide, Maxolon, Metoclopramide Oral Solution, Reglan including Reglan Tablets, Reglan Oral Disintegrating Tablets, and Reglan Injection FDA Requires Boxed Warning For Metoclopramide Drugs - Thu Feb 26, 2009http://www.reuters.com/article/companyNews/idUSN2629346520090226 and others Excepts only: WASHINGTON -(Dow Jones)- The U.S. Food and Drug Administration said Thursday it was requiring manufacturers of metoclopramide, a drug used to treat gastrointestinal disorders, to add a boxed warning to their drug labels about the risk of developing a neurological disorder. Manufacturers will be required to implement a risk evaluation and mitigation strategy, or REMS, to ensure patients are provided with a medication guide that discusses this risk. Recently published analyses suggest that metoclopramide is the most common cause of drug-induced movement disorders. Another analysis of study data by the FDA showed that about 20 percent of patients in that study who used metoclopramide took it for longer than three months. The FDA said development of tardive dyskinsia "is directly related to the length of time a patient is taking metoclopramide and the number of doses taken." The FDA recommended that treatment not exceed three months because the risk of the movement disorder was "directly related to the length of time a patient is taking metoclopramide and the number of doses taken." "The chronic use of metoclopramide therapy should be avoided in all but rare cases where the benefit is believed to outweigh the risk," said Janet Woodcock, the director of FDA's Center for Drug Evaluation and Research.

Moving

Today we did a lot of moving. We got all of the boxes at our new condo. They are glad they had us move in there. They know Trevor’s parents. They know that we would be good tenets. I can’t wait to never have to walk up four flights of stairs every day. Tomorrow and Friday we have more moving. Trevor gets the weekend off, so we can rearrange everything. We are really, lucky to have that place. We are very thankful. They are glad to have us too. I have to drink lots of water and to help my bladder retention. I stayed up all night in pain from that catheter. Voiding every 10 minutes. Things can get better. Look for those stars. The stars guide us. Follow those. The stars will always be there to guide us.

Water Retention

Today I went to the hospital. We thought I had another bladder infection. Went too the hospital. They thought I was having an allergic reaction. Scanned my bladder. They found out it was full of urine. They think I am having Water Retention Problem. That is why I have the pain. They drained me through a catheter. It was painful and still hurts now. I just got out of the hospital. They are referring me to a Urologist. They want to find out what is causing it. We are going to fully move in on Friday and the net is coming there on Sat. I won’t blog for one day. We will see if I have time to blog while I am moving. Continue fighting. Fight all of the time. Giving up is not the answer. Never consider it. Never give up. We need to fight. We always will fight. Nothing will change that. The fight is ours. The fight is for our life. Our life is on the line. Fight all the time.

Special Needs Travel

The thought of escaping winter’s icy blast is an appealing one, particularly since Mother Nature decided to blanket most of Canada in snow early this year and is showing no signs of letting up.Booking a plane ticket and arriving just a few hours later to the feel of warm breezes and swaying palm trees is a dream for many. But for those with special considerations, like Huntington’s disease, buying that ticket is the easy part. It’s the thought of organizing a vacation where wheelchairs and medical concerns are part of everyday life that can make it difficult to imagine a dream getaway.

Organizations like Accessible Journeys are making it easier for those with special needs to travel the world. Specializing in “wheelchair travel” since 1985, their website (http://www.disabilitytravel.com/) offers a wealth of information about accessible lifestyle vacations, including lists of healthcare professionals willing to act as travel companions, equipment rentals worldwide, opportunities for group tours and cruises, and accessible property rentals in countries like Jamaica and France.Despite the tongue-in-cheek name, Gimp on the Go (http://www.gimponthego.com/) takes a serious look at the needs of travellers with disabilities. This specialized online travel publication includes articles and reviews by its readers, a look at various travel destinations, tips for travellers ranging from wheelchair beach access to renting an accessible van, the latest happenings in the travel industry for those with special needs and a full gallery of holiday photos that are guaranteed to inspire the urge to travel. A page full of travel resources covers every topic imaginable.

The Globetrotter Club (http://www.globetrotterclub.com/) considers itself “the world specialist in tourism for the physically challenged travelers, their family and friends.” The online travel agency offers flight and hotel bookings, car rentals, travel insurance and passport information, along with a great deal of information on escorted tours, safaris, cruises, health and wellness getaways, and other unique vacation ideas.

Transport Canada operates a website called Access to Travel (http://www.accesstotravel.gc.ca/) that aims to make travel easier and more enjoyable for Canadians with disabilities. It offers a list of transportation options for travel across the country and more specific local transportation in various communities. For example, the local transportation link will take you to a map of Canada where you can choose a province and then a city. The city page will provide a list of accessible transportation options. There’s also a list of accessibility options in Canada’s airports and a number of travel-related links, including the Ontario March of Dimes (http://www.marchofdimes.ca/), an advocacy organization for people with disabilities. They organize a wide range of trips throughout the year, including short day trips to visit local attractions, a summer holiday program and weekend getaways.There are many opportunities for special needs travel, both across Canada and around the world. For those strictly looking for accommodations, there are companies like Access Victoria (http://www.accessvictoria.com/), providing accessible vacation suite rentals. Access-Able Travel Source (access-able.com) is another site brimming with unique travel information. Emerging Horizons (emerginghorizons.com) specializes in accessible travel news through its print and online magazine, and Access Anything (http://www.accessanything.net/) opens a world of opportunity with its “Go Anywhere Do Anything” attitude.Just a brief tour around the Internet is proof enough that the options for special needs travel are vast. Now the only question remaining is...where would you like to go first?

Juvenile HD

http://www.huntingtonsociety.ca/english/uploads/Juvenile_HD_-_Wilcox_family_FINAL.pdf

I am so Excited to Move

I am so excited to move. Tomorrow we get the keys for our new condo. I saw Hilary and her family when she was at Swan Valley, where I look after Molly. She left us some flower plants and a Hyde a bed. We told if she can’t take everything, we have no problem receiving it. She needs to move into a manor across from her husband. Her kids didn’t need them either. They no longer could keep Rick home. I like both of them and their family. I met her at the Power Of Attorney conference. She met Trevor and I, and felt sorry for us. I told her that, I am going to get cured though. Today is Trevor’s Dad’s birthday. We took him out for dinner. I can’t believe that we are getting something good. If you wait patiently things get better. You just wait. This is Trevor and I’s year. It is about time we had some good luck. We had to fight for everything. Keep up the fight. It is always worth it. Trevor and I had periods where we thought that things would not get better. Things do get better. We have disability now. We got this condo for 280 dollars a month. Wait and good things come to good people. Be a good person and karma will back you.