I was diagnosed with KD on Feb. 6th/06. I've been doing lots of reading since! I'm trying to get a handle on how far into this disease I am. My AR CAG repeat came in at 45. I just turned 40 this past October. Here is where I am as far as symptoms. I first reallized there was a problem the fall of 2004, when I was walking one day I had a "shin splint" feeling on my right leg and developed a limp that came and went for a month or so. Then it came and never left, slowly getting worse. Right now I have cramping all over my body, my right leg has a foot drop when I walk, both my right calf and thigh muscles are noticeably smaller than my left. My toes on the right foot turn purple with lack of circulation. My right grip is getting noticeably weaker also(hard to squeeze nail clipper). My left leg is slowly getting weaker. I need something to hang on to, to be able to climb stairs and ladders(Telephone installer repairman). Find myself choking on food or drink once in a while. My balance is terrible(hard to stand still without hanging on). From Kneeling position, my left leg and arms have to push toghether to be able to get up. I see lots about this being a slow progression but, I beg to differ!! Can I expect this pace to continue and be looking for a desk job(700 miles south in Winnpeg by the way)in the next few months? I'm not keen on the moving but, have no choice if my company wants to keep me working and not on disability( no desk job here). Any insight would be greatly appreciated!

Hello Darwyn, You say that you had no real noticable symptoms until 2004 and since then all this progression has taken place? It seems a bit accelerated to me but since you have a physical demanding job that requires climbing ladders and crawling through attics I would imagine that may explain some of it. Over use of the muscles that you currently have can do more damage from what I have heard. I was diagnosed at age 35 and it seemed to come on fast for the first couple of years and then stay at a certain level for a while and then progress again. KD seems to work that way with most of us. Right now I am in a progression stage myself and am trying to deal with it. The disease seems to progress and then platau for a while and then progress again and platau. We are here to support you and you can call us anytime to vent. You should join one of our chats that we have online every 1st & 3rd Saturday of the month at 07:30 PST. Here is the link to the chat page to register http://www.kennedysdisease.org/disc_chat.html Come join us if you can. Hang in there and if you need to talk you can call us at the KDA. or post here, e-mail us or join one of our chats.

Thanks for the reply Terry. The fall of 2004 was when I first noticed the problem but, I did have cramping in my thighs once in a while and major cramping in my calves most nights in bed for probably a year before that. I've had hand tremors probably since my mid teens(maybe that was an early sign?). I meant to join the chat today Mar.4th but, forgot. I guess I'm trying to get a handle the speed of the progression so, I can make somewhat of informed decissions as far as working at my present job, moving to the inside job, disabilty, financial implications, family needs, etc. None of these being easy decissions! Thanks again. Would be glad to hear from anyone that has any insight into my situation.

Darwyn, I would like to add a little more to Terry's reply. His experience with KD symptoms platauing and the progressing is the same thing that happens to me.

I am 59 years old. I had muscle cramping for years (especially in the calves) that was quite painful. That eventually went away. I still experience muscle pain, but not daily.

The more physical your occupation, the more difficult it is on your muscles and motor neurons. Ladders and steps are very difficult on the muscles. Light and (I will use the term) smart exercising is good for your muscles and motor neurons. It stimulates them and keeps them stronger. Any type of activity that taxes your muscles could be detrimental to your conditions over time. When I was in my 30's and 40's, I thought that any weakness just needed to be exercised. I ran, lifted weights, walked on the treadmill, etc., anything that would push me and my muscles to the extreme. Later on, I found out this was a mistake and I did far more damage than good. Today I do light exercises (arms, legs, hands, throat, and face)every day. It appears to help me quite a bit.

Your first concern should be your safety. Your second concern should be to 'do no further harm'.

I hope this helps.
Bruce

This one is for Bruce.

Morning Bruce. I have just returned yesterday from the NINDS in Bethesda and I asked them this very question, in regards to how much and what kind of excercise.

Could you give us a general "routine" you use. I as well have had physically active careers that have done more harm than good (Firefighter, construction etc...) and I am uncertain of what to do now....

There are a couple of good examples of exercises in the 'Exercise' section of this forum. Several KD'rs have done very well with some type of pool therapy.

I have done well with Qigong (a form of Tai Chi). I also perform some aerobic style exercises every day including the following:

1. Use a grab bar in front of me for balance, I stand on one leg for two to three minutes. I then switch to the other leg. When I first started, two minutes did not seem possible.

2. After flexing the legs a few times, while still holding the grab bar I then twist to the left as far as I can go (I end up looking backwards) and then to the right. Each twist I hold for about five seconds and then twist in the opposite direction. I do ten twists to each side.

3. I flex my legs a few times and then while holding the grab bar walk in place. I actually perform the walking motion including the slight lifting of the knee and foot. I do 200 steps. At first, I could really build up a sweat doing these exercises, but today it is relatively easy and still something comfortable to do.

Results: I have noticed no adverse effects from the exercise and the quads and knees feel stronger today then they have felt in years. My balance has also improved.

I also do a series of isometric exercises every day. These are for the hands, arms, shoulder, and neck. If you would like more information on these, let me know. My neurologist approved all of these and actually has told others about it.

My brother with KD, who is 73, still exercises every day. He lifts light weights and does a modified form of sit ups. He swears by it.

The key is to just do what the body feels comfortable doing. Never exceed your capabilities, because then you are probably doing damage. The goal is to stimulate the healthy muscles and neurons to help keep them functional.

After I was incapacitated with a broken tibia and fibula, I really had to take my time coming back. At first I couldn't hardly do anything, but with patience and a strong desire, I believe that I am slightly stronger now than right before the fall.

Hey Darwyn. My take on your situation is - your progress seems unusually rapid. Sometimes, being made aware of your condition results in an awareness of many little symptoms that have been around for a while. I haven't heard of lack of circulation being a result of KD. It is time to make some lifestyle changes. Get out of your physical job now. Get south. The sooner you can ease up on your body, the better life will be. If you have a decent disability package, try to stay with the company you were with prior to diagnosis. Otherwise, get a job with a good disability package - like government. Get a good neurologist - I know a great one in Winnipeg. Not easy to wrap your head around at first, but as you down the road, it's not that bad, really.

Hey Cam. Thanks for the reply. I'm trying to figure out the right time to go(kids schooling, where to go, spouses work, etc.). My employer says they'll try to accomodate me as much as possible. I'm hoping that means I'll have a choice between Winnipeg and Brandon(I'm not sure yet, if I'm ready for the bigger Winnipeg). They also say they're willing to send help up once in a while if I need it.
I just got a call from my local M.D. saying my Neurologist in Winnipeg wants to see me. He's in the Markam Building. Maybe it's the same one you know? He's the one that diagnosed me on my very first visit to him. It sounds like that was pretty impressive in itself(usually wrong or longer to get it). He seems to be very straight forward about things and admitted his first concern was that I might of had ALS and ordered the KD test just to make sure. This leads me to trust him at this time!

Just wanted to give an update. I requested a transfer from my employer and am now in Winnipeg. I now schedule the telephone work that I used to install. I'm going to keep working as long as possible. I'm not interested in staying around the house right now(still progressing quite fast, infact AFO on left foot now). I'm really dependant on my wife and daughters now, as I have a hard enough time getting around never mind doing any chores! Believe me I sure appreciate it! I'm going to try catch the chats more often, now that were a bit settled. Just a side note, my wife and I did my first visit to NIH last week.

Just wanted to update again. I had to quit working as of April 2007. My talking, breathing troubles and continued weakening made it way too hard to continue. As of today I can no longer walk, I need assistance to stand and can only stand for less than a minute as my knees will buckle under me with little or no warning. I have to sleep with a Bi-pap machine at night. My breathing is about 1/4 of normal. All the nuerologists from NIH and the 2 here in Winnipeg have never seen a progression this fast and with the breathing issue( diaphram too weak, it's not suppose to be a Kennedy issue) I'm experiencing. I have very little grip in both my hands now and noticeable atrophy. My family has been tremendous and are supporting me in every way possible. Thanks to them for all that they do!!

Darwyn, I am sorry to hear that things continue to decline for you. The severity and speed of the onset has me baffled. You have a good team at NIH. Combined with your doctors I hope they can find out what is happening. It definitely doesn't seem like KD is causing all of these issues especially with a man as young as you. If it weren't for family and friends, it would be a lonely life for us. Keep in touch and we'll keep you in our thoughts and prayers.

Regrets, Darwyn. Hope you are getting to enjoy the summer. Bruce has expressed my thoughts better than I could, hope things improve for you.

Thanks for your thoughts Bruce and Cam. I forgot to say that while I was in ICU at NIH in Bethesda, they performed every test they new of and that were recommended from other specialists. Everything was negative. So, we are at the point of regular visits to respiratory every few weeks and see how things progress. I'm still hoping to be able to attend the Vegas Conference.