Kennedys Disease Community
Inconsistant weakness

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12-18-2013, 03:01 PM
Inconsistant weakness
Hello all, first time poster.
I've been noticing that there are stretches of 3-4 days where I feel almost normal when it comes to overall strength (by normal, I mean I can walk to my car without feeling like my legs may give out). Then I'll have 2-4 days where walking the same distance can be a chore. Does anyone else have these inconsistent phases? I've visited several KD sites and they all say that the weakness is consistent.
12-18-2013, 04:49 PM
John B
Hi Cecilio, welcome to the forum.

I was diagnosed with KD in 2008 and am fortunate that my symptoms are (to date, at least) relatively mild. I do experience a noticeable variation in the affect of my symptoms. There is no pattern to it, but sometimes I can spend a whole day doing light physical work and others (such as today), I am very tired and have little energy. Other aspects of my condition seem to maintain a certain level. For instance, one particular problem I have had for a few years is the act of standing from a crouching position. My ability to do so doesn't seem to vary much from day to day (although I am aware of deterioration over several months), so I guess the conclusion in my case is that my strength doesn't fluctuate much but stamina is definitely inconsistent.

12-20-2013, 10:18 AM
Cecillo, I don't know your age or age of onset, so I will speak more generally. Yes, your experiences are perfectly normal. When I was in my 30s and 40s and overdid, I could be wiped out for a day or two afterwards.

For several years I have kept a journal of my exercise program and anything associated with KD. Some days I feel great, other days I feel normal, and a few days a month I am weaker. Occasionally, I still become wiped out, but fortunately not very often.

What I have noticed through the years is that the difference between being fine and being a danger to myself narrows dramatically over time. In other words, I can feel fine walking and all of a sudden I need to sit down and rest immediately or I might go down.

And, Bob's comment about strength not fluctuating much is true, but there are exceptions. And, if the muscles are fatigued, they will give out quicker and easier.

Pace yourself and become more aware of these changes so you don't fall. I hope this helps.
12-28-2013, 04:00 PM
Thanks for the advice
01-25-2014, 07:45 AM
BC Paul
As Bruce and John B have said, it seems that its not so much strength but stamina and fatigue that vary. I would add reflex as well, that sense of not being sure the foot will go all the way its supposed to without collapsing. Modafinil is a reflex enhancer prescribed for 'excessive daytime sleepiness' which at very low doses (50mg)on those days when fatigue is just not an option, has made a dramatic change in my outlook and ability to get things done. ...
01-31-2014, 10:20 AM
John B
Yes - very good point, Paul. My reflexes have definitely deteriorated (although, as with stamina, each day is different) and are a major factor in stumbling. I have learned to concentrate on foot placement when negotiating tricky terrain - it is the occasional trip in 'safe' environments which catches me out.
02-20-2014, 03:19 AM
BC Paul
I know the feeling John, just sprained my ankle getting up from the table Rrrrggghh!