Greetings everyone,
I have been experiencing difficulty walking, extreme muscle fatigue when i exert myself in any way for a few years now with every other symptom listed on this website for KD. It was only last thursday when i went to see Dr. Amato at brigham and womens hospital in boston, ma that I was told I was a "great candidate" for this disease. I have not had the blood test yet to confirm, waiting for my primary care to get back from vacation. I found this website while trying to educate myself on this disease and I want to thank all of you for taking the time to post. I have already learned so much.
I noticed that people have been confined to wheelchairs and I was curious if there was an average time it took the disease to progress to this stage? I myself have to walk with a cane and can't walk the length of one isle in a food market before i need to stop and rest. Its been 4½ yrs progression for me, is this fast or typical?

Michael, welcome to the forums. I agree with you that this site and the forums are a wealth of information and also a great support group. I don't know if there is an "average" progression of KD. I had many symptoms over the years, I have had tremors my entire life. The first significant weakness occurred while cleaning out a basement 6 years ago. I made two trips up and down the stairs and then could barely stand. I am forty years old. I was diagnosed with KD in spring of 2008. I walk with a cane and my wife would like me to use a wheelchair, she says watching me walk is frightening. As a matter of fact, I fell this evening (at home) and could not get back up. I had to crawl to our couch, rest, and then "climb" up the couch. I still could not stand all the way up. My fourteen year old son had to come help me straighten up.

My progression is rapid and not typical, at least in that last 6 months. I cannot work, as my arms, and hands are so weak that typing causes severe tremors after only a few minutes. My arms are shaking as I reply. My suggestion is to have the blood tests, and if confirmed, locate a good neurologist who can help you navigate these waters. And, take of advantage of these forums.

Again, welcome to the KD forums.

Michael, welcome to the forum. I would also recommend that you join the KDA when you are ready. You can join from the main page on our website.

Reference your question, there is not timetable for the progression. Some people are still snow skiing in the 60's while others feel more comfortable in a wheelchair in their 40's. One of the KDA board members still runs marathons in the late 40's. Some people will have difficulty walking or taking stairs earlier in life than others.

What I can tell you from experience and from conversations with doctors who are familiar with our condition is that 'smart' exercising is important to maintain your strength and to fire those motor neurons. Over-doing is not good for you, but under-doing is as bad. Most importantly when considering any exercise program is to "do no harm." There is the latest version of a 'smart' exercise guide on our website. I can personally attest to the benefits of this program. I am doing stuff today that I couldn't do 3½ years ago.

My recommendation is to have the blood test. If you have KD, join the KDA. Discuss exercise with your neurologist and perhaps even bring in the 'smart' exercise guide for his/her review. I was designed by a physical therapist for my current condition. The guide has plenty of tweaks to make certain exercises more difficult as your capabilities improve.

If you have more questions, please don't hesitate to ask them or email us at the KDA. We look forward to hearing from you.
Bruce

Thank you for the warm welcome and all of your help.
to Jim- I'm sorry that you fell in your house! I hope you didnt hurt yourself badly. I will definitly have the blood test and while I know that is the only sure way to know if I have the disease, I cant help but know in my heart that I do have it. There is nothing else the Doctors have come up with that is such a perfect match for the symptoms I have.
To Bruce- Thank you very much for the advice on exercise. I am currently going to Aquatic Therapy and that seems to help my symptoms from flaring up too bad and still give me the workout i need. I will definitly watch how hard i push it. I use to be very active before i broke my neck and back mountain biking so i come from the mentality of pushing yourself hard. Its good to know that I cant do that any more!
I really cant thank you guys enough.
Mike H.

Mike, I was somewhat of a jock myself. I felt that if I was becoming weaker I just needed to work out even harder. MISTAKE! I did more damage in just a few years of constant pushing than I have done in all the rest of my years. We call it the "smart" exercise guide for a reason.

Aquatic Therapy is quite good. One of our board members does that every week and speaks highly of it.

Whatever you do, just "do it."
Bruce