Just noticed this article in MDA's website which may be of interest to some of us.

I have cut/pasted the article to include only the interesting stuff...

AAN Meeting Report
Here is a summary of news reported at the American Academy of Neurology Annual Meeting, April 28-May 4 in Boston.

Among the hundreds of presentations were dozens related to neuromuscular disorders in MDA’s program. Many of the findings resulted from MDA research funding and/or the contributions of MDA clinic physicians

SPINAL BULBAR MUSCULAR ATROPHY

A drug called goserelin (Zoladex LA) was effective in improving strength in four men with spinal-bulbar muscular atrophy (SBMA) who took it by injection every three months for three years. The drug decreases levels of the male hormone testosterone (an androgen). The underlying cause of SBMA is a mutation in the gene for the so-called androgen receptor protein.

Thank you for the information. I wrote Dr. Fischbeck and asked what he knew about this drug. His response is below.

"I did not see this presentation, but I spoke with Dr. Shoji Tsuji of Tokyo, who told me about their anti-androgen treatment studies. The results are encouraging but not definitive. They point to the need for a larger controlled study, which is being done in Japan with leuprorelin, and indicate that long term treatment may be necessary to see a benefit (Dr. Tsuji feels 5 years may be needed)."

I have been trialing Zoladex since April 2005 in conjunction with a regular exercise program. I undergo strength testing each six months in an attempt to measure any improvement in my condition. At this stage I suspect that some muscle groups are slightly stronger and others marginly weaker and don't know whether this is from the Zoladex or the exercise. I suspect that it is a combination of both. Friends comment that I look better and that my speach has improved. Side effects from the Zoladex include hot flushes, loss of libido and bone wasting. I put up with the first two and use Fosamax for the third. I don't know what my condition would be without the Zoladex and am happy to continue the trial for the time being.

I eagerly await more information on the synthetic curcumin derivitave ASC-J9.

Hi Cliff:
Was just wondering... Is your participation in the Zoladex trail thru a medical sponsored program? Is it as previously mentioned, an injection every other day? Other than improvement to your speech, have you noticed if any other functional muscles (arms and legs) have gotten stronger? Can you give us a bit more detail in regards the exercise program?

I too, am anxiously waiting for further info on the ASC-J9. Hopefully we'll get more details in the near future.

Hi loshimo,
My trial is not funded by a medical sponsored program. I am Australian. With our small population of only 20 million there are simply not enough Kennedy suffers to attract such programs. However there are medical researchers interested in the disease and I have been fortunate to meet one of them. I receive my Zoladex by a three monthly implant into the fatty tissue around my gut.
I am due for strength tests in the next few weeks and can't be presice about gains or losses. Without the results of those tests, I feel that my arms might be slightly stronger and legs slightly weaker. I think that my shoulder hunch might have improved marginly. Exercise could have contributed to any gains.
I exercise under an instructor three times a week at a local gym with a group of seniors. We exercise for an hour each session and undertake a mild weights program twice each week with an endurance session on the other occassion.
I originally commenced exercising with a core strength program supervised by a physio in a heated acqua pool for about eight or nine months. I then graduated to an acqua arobic class for another six to eight months before moving on the the land based weights sessions. I have been with the land based group for about eighteen months. I found the acqua arobics improved my endurance enabling me to graduate to the land based sessions.
None of this has been easy or quick and I don't know what my condition would have been had I done nothing. We will never know that. I just struggle on and do the best I can.

Hi Cliff:
Thank you very much for detailing your experience with both the Zoladex and exercise program.
I was just wondering since I had not heard of any medical sponsored trials here in the States. In addition I was curious as for the intensity of your exercise regime since there's been previous talk about possible muscle damage.
Anyway, I appreciate you sharing your experience.

Here is a link to a Thai study that is looking at the treatment of SBMA using Zoladex/goserelin. Results are due in November 2011.