I believe many of us who have been diagnosed with SBMA / Kennedy's Disease would like to know what to expect, as in: How long will it be before I have trouble climbing stairs, need a scooter/wheelchair, etc? Recently there have been published some scientific papers giving some details that were obtained by studying men with SBMA. Keep in mind your actual results will vary significantly due to age, physical condition, amount of exercise, and many other factors.

For anyone who is interested, I encourage you to read the originals, which can be found by entering the titles/authors into a search engine such as Google.

"Clinical features of spinal and bulbar muscular atrophy" by Rhodes, Fischbeck, et al., Brain 132:3342-3251 (2009). They studied 57 men with an average age of 53 years. In strength measurements, the SBMA men were 38% to 70% as strong as unaffected men, with an average very close to 50%. In a self-assessment of sexual satisfaction, the SBMA men rated 59% as satisfied as unaffected men. There are several other interesting results in this article and I encourage everyone to read the entire thing if so inclined.

"Natural history of spinal and bulbar muscular atrophy" by Atsuta, et al., Brain 129:1446-1455 (2006). The authors studied 223 Japanese men and recorded the age of onset for various symptoms. Some of the median ages are:
Hand tremor 33,
Muscular weakness 44,
Required a handrail when going up stairs 49,
Speech impairment 50,
Swallowing impairment 54,
Use of a cane 59,
Use of a wheelchair 61.
It should be emphasized that your actual results will vary. For example, in "Required a handrail when going up stairs" the median was 49 years, but the range was 29 to 75 years. The other symptoms have similar ranges so you should not consider these ages as "cast in concrete" but rather as the roughest of estimates.

These articles were also covered by Bruce in his blog at the following links: Link1 and Link2 and his comments are extremely worthwhile reading too.

Dan, I believe the important results of this study (The Natural History of SBMA) for me was two fold.
1. The higher the CAG Repeats the earlier the onset.
2. Once symptoms became evident, no matter what the age, the progression (in regards to years between each new onset of a symptom) were similar no matter when onset began.

Is the CAG repeat on the genetic test results? If not, where could we find it?

Lois, yes, the DNA test shows the number of repeats in the CAG DNA. That is the determining factor on whether a person has the mutated AR.

Unfortunately, Bob isn't sure where he put his results. I suppose we could call the DR or MDA clinic for a copy.

Lois, yes, your doctor will have a copy in Bob's medical file. You need to keep a copy in your records along with other pertenent medical information in case Bob needs to apply for SS-D or long-term disability compensation.

BTW, I like your picture. Are you a cat person? We have two strays that we adopted and they are our critters ... love them to death.

He had to "retire" as he broke his hip 3 months before diagnosis. He had a very physical job which he could no longer do.

Yes, we are cat people. That is me and Kiki who passed in June at 20 years, 69 days old. I miss him terribly but we adopted 4 kittens into our home from a female we keep outside. She was to be spayed but the form came when she was "7" weeks along. I say that as two others spayed at that time were supposed to be that far along but it was another 4-5 weeks till these guys were born. We could not abort more or risk her life so she had 5, one died on the 30th day. We brought the other 4 inside at 7 weeks.

Lois, twenty years ... how wonderful. I cannot even imagine what Kiki's loss must have been like for you.

I believe you mentioned you applied for SS-D. How long ago? If you have everything filled out correctly and all the backup materials, most acceptance letters arrive within 6-8 weeks. You might push for Medicare acceptance also. Some people had to wait one year, while others received it at SS-D acceptance.

Also, your doctor can recommend PT. Most insurance programs cover PT if recommended by the primary physician or the neurologist.

Bruce, we are both on a medicare advantage plan and I think there is a $25 co-pay for each visit. I had about 10 years of PT myself before Bob was diagnosed and we had really good insurance. Not sure what changes are happening with our insurance next year, but I expect higher co-pays.

It was tough losing my Kiki, but I had 1.5 years to get adjusted to the idea. We were told in Nov 2008, he was going to die and did we 1. Want to put him down or 2. Pull out all his teeth! At 19, pull out all his teeth? Not only was it going to be expensive, he would have probably died on the table. We gave him 3 rounds of anti-biotics for his mouth and fed him mainly wet food. He regained some weight and live another 1 yr, 7 months! I miss him terribly but know it was for the best. He was gone one morning after we had a great day/evening before. He loved chicken and we shared some the night he died. No long agony for him, I think his heart must have just stopped and he fell over. He will never be forgotten.

Lois, thanks for sharing your last few years experiences with Kiki. Gone, but never forgotten.

Thank you Bruce. I'll have to post a real photo of him sometime.