Kennedys Disease Community
Observations re. KD symptoms in male forebears, siblings and other close relations

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12-24-2009, 09:14 PM
John B
Observations re. KD symptoms in male forebears, siblings and other close relations
That's very interesting, Jim, thanks - I can relate to your uncle's experience. As I've mentioned in a previous post, I can now look back and recognise early symptoms of KD, which at the time struck me as odd, but of no particular concern.

In the summer of 2007, my family and I went on a short cruise to Holland. Ascending the 3 flights of stairs to the cabin deck, I 'crumpled' on each one, much to my wife's (and my own) embarrassment, as we were amongst a throng of fellow holidaymakers. I experienced no further incidents that I can particularly recall, but as I mentioned in one of my recent posts above, unless I take care nowadays I am prone to stumble and fall with little provocation.

I was sorry to read of your mother's problems, to which I can again relate. Apart from the inability to raise her arm (to which I referred in the same post), my own mother has difficulty standing for more than about 5 minutes and, around ten years ago (aged 72), she had to start using a stair-lift (which had been installed for my late father, who suffered from an unrelated condition).

Thanks again for the information and may I wish you and your family a Merry Christmas and Happy New Year. The consultant neurologist (a professor, no less) whom I saw a few months back was optimistic that treatments under development for other, more common, genetically transmitted neurological conditions may help those of us with KD, or at least ensure that our daughters don't have to face the prospect of passing it on to a new generation - let's pray that she's right.

This message has been edited. Last edited by: John B,
02-08-2010, 07:25 AM
John B
It is now seeming more likely that symptoms which are being experienced by my mother (aged 82) could be attributable to KD. The weakness in her left arm has not improved (though neither worsened, thankfully) and she is now finding difficulties with her right arm. Her leg weakness and tendancy to fall is little changed and she has recently told me that (for several months) she has had tingling and numbness in the fingers of her right hand. This ties in with my own experience, particularly at the onset of the symptoms which ultimately were diagnosed as KD. She also finds that she inadvertantly drops things, much as #3 of the Annoying Inconveniences posted recently by Pocatello Jim.

As for me, the breathing difficulty continues. I visited my GP, who sent me for an x-ray and blood tests, but nothing was found to suggest it might be due to some more common cause. I can't say I'm unhappy about that, since the potential candidates (cardiovascular and/or respiratory diseases) were all pretty unpleasant in their own right! The breathing exercises have helped, but I still find myself desperately gasping for breath when crouching and, strangely, when I first lie down to sleep. I do strongly suspect that the weight I have gained around my midriff during the winter months is a contributory factor (obstructing my diaphragm) and am hopeful that some much-needed exercise and a more sensible diet will, to some degree, ameliorate the problem.

This morning's mail brought an August appointment to see my consultant neurologist (Professor Morrison at Queen Elizabeth Hospital, Birmingham, in case any UK members are interested). Last year she spoke encouragingly about the possibility of research into other, more common, neurological conditions leading to treatment which might help KD sufferers, so it will be interesting to hear what she has to say this time. I'm sure nothing of relevance will be new to KDA members who keep abreast of such research as the lion's share is carried out in the USA, but I'll post anything I learn, nonetheless.
02-08-2010, 10:58 AM
John, thanks for sharing more information on your mother and yourself. If you learn anything interesting from your neurologist, please let us know ... because you never know whether we have heard about it before or not.

Yes, weight can be a killer to those of us living with Kennedy's Disease. Exercise including swallowing and breathing exercises can really help. Keeping your body including your lungs as fit as possible is important to maintaining mobility and a quality (as good as could be expected) lifestyle. A major factor in this area is that we live a more sedentary life as the disease progresses. If we do not curtail our eating habits to be more in line with our slower lifestyle, increased weight is the natural result.

Reference your mother, most older women that are carriers are never tested. My mother was just told she was getting old and some things just do not work quite as well. It is unfortunate that many of our mothers were never diagnosed, because a correct diagnosis might have been helpful to their lifestyle and quality of life (greater access to doctors and medical equipment).