tag:blogger.com,1999:blog-6390441292756538494.post7862963970058750977..comments2024-03-27T01:10:45.967-04:00Comments on Living with Kennedy's Disease: The Natural History of Kennedy's DiseaseBrucehttp://www.blogger.com/profile/17127100017051232292noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-6390441292756538494.post-39033364990419767112010-05-13T14:13:13.179-04:002010-05-13T14:13:13.179-04:00John, you are doing great! Thanks for reading and...John, you are doing great! Thanks for reading and commenting on my article. <br /><br />As you probably know, I am an advocate of exercising. I commented several times that "smart" exercising is an excellent way to keep the motor neurons firing and muscles stimulated. <br /><br />Yes, you are right about a wide range. I mentioned in an article several months ago that there is nothing uniform about symptoms, onset, and progression for people living with KD.Brucehttps://www.blogger.com/profile/08277245164759254126noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-2723624882291249882010-05-13T14:08:23.153-04:002010-05-13T14:08:23.153-04:00JoAnn, thanks for reading my blog and commenting. ...JoAnn, thanks for reading my blog and commenting. I recommend that you and your husband read my "Document Everything" - Part I and II articles. It could be important and needed someplace down the line.Brucehttps://www.blogger.com/profile/08277245164759254126noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-79490685459943981582010-05-13T13:04:39.851-04:002010-05-13T13:04:39.851-04:00Bruce - this was a really interesting article. I w...Bruce - this was a really interesting article. I was dismayed when I first read it as it seemed to indicate quite a standard and relatively fast transition between the stages.<br /><br />I am 61 and was offically tested positive for KD about 6 years ago. First symptoms e.g. cramps were probably in my late 30s. Thankfully I do not appear to have deteriorated in the last 10 years. I test myself climbing up/down the stairs 5 times not using a hand rail every few months to be a little more objective. <br /><br />I realise I am very fortunate and know things can change quicky. I exercise at the gym 3 times a week and in particular, use a vibration plate machine with my exercises. It could be coincidence but I have a feeling exercise is very important to KDers especially in the early stages. This may not appeal to others but I pray and feel God has a role for me in the voluntary work I do. This seems to take my mind off the future path of KD.<br />I think these reports are useful but we should bear in mind that there seems a wide probably unexplainable variation in each of us as individuals.<br />Thanks<br />JohnAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-90447283173794259412010-05-10T09:32:08.229-04:002010-05-10T09:32:08.229-04:00Thank you it was a very good reading. My husband h...Thank you it was a very good reading. My husband has kennedys and is 48 he found out he had kennedys about 4 years ago. <br />Thank you<br />JoAnnAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-40849737184529347532010-05-09T10:42:44.960-04:002010-05-09T10:42:44.960-04:00Thank you, Bertie
I appreciate your kind comments...Thank you, Bertie<br /><br />I appreciate your kind comments as well as your perspective on the disease. I believe reading the study makes you consider your onset and progression. In my Tuesday post I will do more comparisons to my situation.<br /><br />If you come up with other thoughts, please let me know.Brucehttps://www.blogger.com/profile/08277245164759254126noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-20387755416993068092010-05-09T08:41:42.579-04:002010-05-09T08:41:42.579-04:00Hi there - I like your blog & now I have subsc...Hi there - I like your blog & now I have subscribed through Google read it regularly.<br /><br />Yes this was a well written & easy to read article. I'e only speed read it but the points of interest to me were:<br />1. How totally typical are my symptoms<br />2. How much younger than me most people were when they were first identified. My brother & I both first became aware of it in mid to late 50ies<br />3. How relentless the progress is - I'd kind of hoped my progression would be slower than average :-)<br />4. How critical it is to avoid pneumonia (I've had it 3 times - the first was very serious but that time years ago I was marathon running & thus able to get over it).<br /><br />Good luck & keep it up<br /><br />Bertie BAnonymousnoreply@blogger.com