Morning All,

I'm curious about other's symptom progression. Initially my weakness seemed to be in my legs. Trouble climbing stairs and ladders, standing from a crouching position, walking long distances, etc.

But, this weekend I have noticed a dramatic decrease in the strength of my arms. Tying my tie for church was exhausting. Turning the steering wheel takes effort. I took a break while getting dressed this morning, because buttoning my shirt took a lot of effort. As I type this post I feel the effort in my arms. It is as if they have become dead weights hanging from my shoulders.

And, I'm scared. Just last month, I was moved to an office position to meet my previous restrictions. I will call my neurologist this later this morning, but was wondering about other people's experience.

Thanks

Hi Jim,

I can relate, big time! I never knew one day to the next, if I could complete the same task. I started pretty much the same, but limp first.
I was a telecommunications installer. My employer paid my move, over 700 miles from a remote location. Close to $30,000, just to keep me working at a desk job in August '06. I had to go on disability in April '07. Boy, did I feel bad, after all they did. I had no choice. They had absoltely no problem with my decission . I just couldn't do the job properly and continue to be personally safe, just getting to the office. Scary, you bet! It's hard to come to terms with, but your best interest has to come first.

I was diaged with K.D. Feb.'06 and bed ridden today. Doctor's say not ALS. I'm not sure.

Not meant to scare you, just felt I had to let you know I've been there and I deal with things as they come. I don't worry about what's next.

Darwyn

Hi Jim.

I'm new to KD, only having been diagnosed this summer, but some experiences I've had over recent years are now starting to make sense. So far, my main symptom (and the one that took me to my GP in the first instance) was the very sudden onset of weakness in my left arm. I was carrying out home DIY using an electric drill, and found within an hour of starting to use it I could no longer lift it to the horizontal. Later that day, I began to experience fairly intense pain in my left shoulder, which kept me awake despite taking pain-killing and anti-inflammatory drugs. I shortly found I simply could not lift my arm more than a few inches from the vertical. However, the pain passed within a few weeks and now, a year later, I can once more lift my arm above my head, although I still have little strength for lifting anything with it. I, too, have trouble buttoning my shirt and fastening my tie (also usually preparing for church!!) and have noticed a general diminishment of my general dexterity - fumbling/shaking lessens my enjoyment of DIY-type tasks and causes minor frustration in other aspects of my life. I have also become aware that I'm far less agile than I used to be, and have a significantly increased tendency to trip going up steps and fall quite heavily. I previously had put this down to insufficient exercise, but can now associate such incidents with the lead-up to my arm problem.

Growing breasts ain't a barrel of laughs, either! Again, I had accused myself of being overweight/unfit, but now the 'man boobs' have reached such a size that, sadly, I would be too embarrassed to go to the swimming pool. A shame, as I would imagine that swimming is a good form of exercise for those KD sufferers able to do it.

Reading the experiences of others, I consider myself very fortunate so far, while not ignoring the fact that a rapid deterioration could be on the cards. I take each day as it comes and (maybe a mistake?) make absolutely no concession to the arm weakness issue, forcing myself to attempt tasks rather than accepting any limitation. I'm awaiting further consultation with my neurologist and am due to see a geneticist to discuss the implications for my children (the hardest thing to bear so far). Depending upon their advice (and, perhaps, that of fellow KDA members), I plan to embark upon a fairly rigorous exercise regime to prepare my body for whatever lies ahead. I do have reservations, as the consequent potential increase in testosterone may not, I understand, be a good thing.........?

Anyway, I hope my observations may be of some help, and I look forward(??!!) to sharing experiences with group members and learning more of how to deal with KD

Cheers, John

Thank you both for your responses.

Darwyn, I have read some of your previous posts and want to thank you for sharing your experiences, they are sobering, but also much appreciated.

John, thank you also. I found reading your post very interesting as my weakness seems to be worse in my left arm. As I type this, I feel the effort in my left hand, my left forearm, and my left shoulder. When I drive, I drive with my right hand, almost exclusively and use my left only for a few minutes to give my right a break.

The tremors and the loss of dexterity have a been a problem for me ever since I was a teenager. My doctors over the years thought it was, "familial tremors" and something in the back of my mind kept saying there's more...there's more. Then came the stairs issue, then came the lack of improvement with strength and energy after sleep apnea treatment.

And, now this. I am having an internal debate about what is best. I can push through the discomfort and weakening of the arms for the moment, but find after a couple of hours I am exhausted and have to lay down. Is that best? Isn't that the manly thing to do? Or do I recognize the weakness and discomfort as my body's signals and start to slow down? Conserve what little strength I have?

My four year old this weekend demonstrated her understanding of my disease and its effects on me. She wanted to play with her kitchen set, it is plastic and about 3 ft tall and weighs next to nothing, but is heavy for her. She came to me and asked, "Daddy, is my kitchen too heavy for you to move into the living room? I really want to play with it in the living room." I was so moved by her love and concern for me...

My family is my greatest strenght in all of this...

Darwyn, John, thanks again for your responses.

Hi Jim,

I was very touched to read your little anecdote about your four year-old daughter. Children are truly a blessing and so lovable at that age (even my two teens have moments of consideration!)

As regards what is the 'manly thing' to do, please don't think I was advocating over-exertion on the part of all KD sufferers. As I said, I'm very much a newcomer to (awareness of) this condition and fortunate that, as yet, I am able to regard my symptoms as having more of a nuisance value than something seriously affecting my quality of life. Darwyn and yourself have clearly suffered debilitating conditions over an extended period and I wouldn't presume to suggest how you should deal with the aggressive exhaustion you evidently have to cope with. I do think you're doing the manly thing, however, in facing up to the condition and dealing with it in an open and honest manner.

Since my previous posting, I've been further exploring the KDA site, and some more of the 'jigaw puzzle' pieces are falling into place. I've suffered facial cramps for a number of years, never really having felt the need to consult a doctor, and deriving rather childish amusement from the wide berth given to the weird guy walking through town with his chin in the air whilst vigorously massaging his neck!

In the last five years or so, I've also had infrequent choking attacks, with no cause apparent. I can suddenly find myself coughing uncontrollably, whilst simultaneously gasping for air through a very constricted passage. It takes some willpower to subdue the cough and focus on taking in adequate drafts of air. Having learned of the potential respiratory complications that come with KD, these attacks do rather worry me, and I have just purchased a book giving instruction on how to improve one's breathing technique.

Concurrent with the onset of my arm problems, I also experienced considerable tingling and numbness in my left hand and foot (leading me at the time to wonder if the cause might be MS). This has now much diminished, although my little finger and, oddly, half of my ring finger remain slightly numb.

I'm now contemplating how to tell my cousins of the problem. As children of my mother's sister, I guess they and their progeny are also at risk. It was difficult telling my younger brother, as he already has other (non-KD) health issues, but thankfully he doesn't seem to be displaying any symptoms as yet. I'll hold off until I've met with the geneticist, though - don't want to scare them needlessly. The worst part from the family perspective will be choosing the right time (some years away, yet) to tell my daughter that any male child she might have could very well be affected by KD.

Much to ponder upon ..........

Cheers,

John

Afternoon All,

Just wanted to let you all know that I went to my neurologist today. Needless to say, she is surprised by the rapid progression of the muscle weakness. She had an EMG done while I was in the office today and said that it did not indicate anything outside of KD. She also scheduled an MRI of my head and neck on Oct. 31. As she said, we don't want to simply chalk this up to KD without first looking a little further. Because, just because I have KD, does not mean that something else might not be going on (a point Bruce made several weeks ago in a post).

I appreciate my Dr.'s concern and approach to this problem. The downside, there may be nothing else and my KD may be more rapidly progressing, similar to Dawyn's experience. In any case, she asked me to take a month off and rest and see if this is a short-term flare up or a long term loss.

Just wanted to let you all know what is going on.