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NATURAL HISTORY OF KENNEDYS DISEASE
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Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Hope you don't mind Bruce, but I decided to make this its own topic for discussion and to compare my own age of onset for symptoms with those of the study.

I do not recall my CAG repeat, only that my neurologist in Indiana said they were not significantly high (low 40's, but I don't recall the exact #)

Hand Tremor - I have had noticable hand tremors since grade school, but because my grandfather also displayed tremors, it was always dismissed as a familial tremor. At age 19, a person at church, who was sharing a hymnal with me, commented about how noticable my tremors were. So I place my age of HT at 19.

Muscular Weakness - My first significant muscle weakness did not show up in my legs, but in my hands. At age 24, I tested for the police department and as part of the physical test, I had to dry fire a police issue Glock. I could not pull the trigger. I got three tries to humiliate myself. So, muscle weakness was age 24 (hands). Leg weakness was age 28.

Handrails Upstairs - Age 32.

Dysarthia - Not sure what exact symptoms are, I can still carry on conversations and speak for up to an hour with no adverse affects.

Dysphagia - Choking when I eat or drink is a recent problem so - Age 41.

Use of a Cane - Age 40

Use of a Wheelchair - Age 41

Developed pnuemonia - Ages 32 & 35

Death - Not yet, but looking at this study and my ages in comparisons - early to mid 50's.

My milestone ages are much younger than indicated in this study which is a huge cause of concern for me. However, I keep repeating to myself a phrase in 6 sigma training, "Correlation does not equal causation."

Thanks Bruce for dusting off the study and bringing up the topic.


Pocatello Jim
Location: San Francisco California
Registered: 06-03-2009
Posts: 25
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A few years ago the KDA conducted some data gathering survey which may or may not have been published (brain fog).
I think that since then our group has at least doubled and I was just thinking whether a less formal (something like you just posted) would be benefitial to the rest of the group. I understand that this disease affects individuals differently (time frame wise), but it would be nice to compare notes with each others.
Any feedback on this comment/suggestion?
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, no problem on starting a new topic on this interesting subject.

Luis, yes, the KDA had a person take all the information and put it into spreadsheet. Unfortunately, it was not as thorough or relevant as this study.

The study Jim is referring to is, "The study is titled, “Natural history of spinal and bulbar muscular atrophy (SBMA): a study of 223 Japanese patients.” Several doctors including Gen Subue performed the study. There is no cost to read or download the report. The link to the study is Natural History Study.

If enough people are interested, I could set up a survey form using Google Docs that anyone could access that wanted to participate in this information gathering. We could make it anonymous so that any information captured could not be traced back (or linked) to an individual. We could use the same ADLs mentioned in the study.

What do you think?
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Bruce, I would be interested.


Pocatello Jim
Location: San Francisco California
Registered: 06-03-2009
Posts: 25
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I'll second that!!!
Registered: 10-12-2008
Posts: 25
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Great Ideas, Jim & Bruce. I'd be very happy to participate.
Picture of Dave Y
Location: Lebanon, Ohio
Registered: 09-24-2009
Posts: 20
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It is a very good idea. I would like to also participate.

I have learned so much from all of you over this last year. It has made a subtantial difference in my life.

I guess the most important lesson for me has been to accept the limitations and work within those limitations. I no longer try to fight it by just working harder.

Dave
<Bob>
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I think my husband would also answer the survey! (oops, I'm signed in under Bob, but I'm his wife...LOL)
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