I have learned my helpful things on this forum, so in the hope that it will prove helpful to others I thought I would share my positive experience with testosterone replacement therapy (TRT) in the hopes that this information might be helpful to others. Obviously, TRT is relevant primarily to male PWPs and their caregivers, but there may be equivalent hormone therapies applicable to women.
I am a 54 year-old PWP, diagnosed 5.5 years ago. Until a few months ago, my most challenging symptom was fatigue. I was simply exhausted all the time, with corollary problems like apathy, brain fog, etc. A particularly important related problem was my inability to recover from exercise. We all know how important exercise is to slowing the progression of PD, but anytime I exercised intensely enough for it to be of any benefit, I would be completely useless for days afterward. I could not keep to a regular exercise program and real "training" was a pipe dream.
My MDS addressed this problem by steadily increasing my Sinemet prescription. This didn't help; in fact, I think it made the problem worse as Sinemet makes me feel a bit ill. Thus began a spiral: at each visit, I reported feeling worse and my tests showed deterioration; my MDS treated the results with more Sinemet, which (I believe) made me worse; wash, rinse, repeat.
Then, in the course of my research, I stumbled on the following article:
It has been shown recently that male patients with Parkinson’s disease who have testosterone deficiency may have symptoms resembling non-motor parkinsonian symptoms. Because of the similarity between the non-motor symptoms of Parkinson’s disease and the symptoms of testosterone deficiency, clinicians may fail to recognize and treat testosterone deficiency in patients with Parkinson’s disease. The identification of testosterone deficiency may have a significant impact on the long term course of the disease, as symptoms mistakenly labelled as non-motor parkinsonian manifestations could be relieved more effectively by testosterone replacement than by other treatments.... Every practitioner who sees patients with Parkinson’s disease should be aware of this common treatable co-morbidity. The diagnosis of testosterone deficiency should be confirmed and prostate cancer excluded before initiating treatment.
I was intrigued, and talked to my older brother, who had recently told me that he suffered from low testosterone. He also told me that our father had the same problem. So I got myself tested, and sure enough, my testosterone levels were quite low. I talked to my GP and began TRT, and the difference is almost unbelievable. I feel about 20 years younger and have returned to vigorous exercise 6 days a week, including heavy weight training 3 days a week. I won't drone on about the improvements, which are myriad, but I will give a few highlights.
> Not only can I exercise again, I crave it. It feels great at the time; each time I do it, it feels better; and I don't feel wrecked the next day. In fact, nothing would be more disappointing to me than to have to miss a run or a lifting session. What an absolute relief this has been. I used to go to bed worrying that I had not done anything to slow down the PD today; now I go to sleep with a sense of accomplishment, plus anticipation about what I'm going to do tomorrow.
> Most of my sleep issues are gone. I now sleep through most nights, rather than getting up 2 or 3 times to go to the bathroom; i.e., the TRT has fixed both the urinary issues and the general insomnia.
> I can now get 3 or 4 significant things done every day, whereas one (say a trip to the grocery store) would have left me useless and exhausted before.
> My appetite has come back, and I am regaining the weight I mysteriously lost over the last 5 years.
> Most of the brain fog is gone. My concentration and memory are noticeably better.
Anyway, that's my PSA on TRT. I won't go on and on about it sua sponte, but let me know if you are interested in hearing any more. I realize this information will be useful only to that subset of the forum with treatable low testosterone, but out of the thousands of members I'm betting there are dozens if not hundreds, and if it's as helpful to them as it has been to me it's worth getting the word out. (BTW, my research also revealed that there is something of an epidemic of low testosterone these days, probably due to diet.)
I can attest to what a relief it is to be dealing with "just" PD. Never thought I would say that.