My doctor has suggested I go on one of two drugs, Azilect or Selegiline, for the "theoretical purpose" of slowing down the progression of Parkinson's. These drugs are MAO-B inhibitors. If I understand correctly, MAO's are enzymes in the brain that can break down dopamine. Since the cause of Parkinson's is the loss of dopamine in the brain, the ideal is to keep as much dopamine as possible - thus the need for inhibiting MAOs. The theory is that taking these drugs will buy some time (possibly about 9 months to a year) before having to start taking the hardcore Parkinson's drugs, which have a limited window of effectiveness and yucky side effects after using them awhile.
It seems to make logical sense to take one of these drugs - so where is my dilemma? As some of you know - I am not always logical so the logical aspect doesn't necessarily help me. I am very much ruled by my emotions. Sometimes it's hard to choose long term benefits because of the immediate sacrifices needed to achieve them. The problem is that I am often emotionally attached to the things I have to sacrifice. That is part of my dilemma now. To achieve the possible benefit of these drugs down the road, I may have to make some sacrifices that I don't want to make and all for a "theoretical benefit". Do I want to sacrifice some of my quality now to possibly gain a little more quantity of quality later? Uh - I don't think so! I want to keep my status quo quality AND also have more quantity of quality later. Is that too much to ask?
This may sound silly to some, but the main reason I don't want to go on these drugs is the possible side effect of diminishing libido and sexual response. Some would say this is a small price to pay for the benefit of delaying the need for the hardcore Parkinson's drugs which have even greater side effects. Perhaps, but somehow I am not feeling that way right now. My emotions are telling me this cost is a little too high! I am emotionally attached to my libido! lol
One of the benefits my husband and I discovered from becoming empty nesters is that our marital sexual relationship blossomed. (OK - maybe I am a late bloomer!) I am way more relaxed and less stressed without kids (go figure), we have more time, and I have learned to really enjoy this part of our life. In fact I like this part of our life - a lot!!! After just spending the last several years successfully fighting the negative effects of menopause on my sex life, I am feeling extremely distressed that going on these med's is probably going to throw me into another sexual downward spiral and this time I won't be able to climb back up. I am finding this thought to be overwhelmingly depressing! If this is one of life's jokes - I am not laughing.
So I have decided - for now - not to go on these drugs. Instead I am going to concentrate my efforts on using exercise and nutrition, and hope these will help slow down the progression without the use of drugs. Maybe I am kidding myself. My doctor has informed me that eventually I will have to go on these drugs and others with far worse side effects. I am sure there will come a day that my sexual life will be impacted in some way by the drugs and the disease itself. However, if it is, I will deal with it then. I am not ready to deal with it now! I like the quality of my life now and I want to enjoy it as long as it lasts.
Am I a fool? Maybe - but for at least awhile longer - I intend to be a happy fool!
CM....No you are not a fool for questioning yourself about taking the early drug/drugs to delay taking other drugs later. You are smart in looking at the side effects of the recommended drugs, and realizing that the drug may affect a very important part of your life. You have to make your decisions based on what is best for you first, and your husband second.
ReplyDeleteI lost a younger sister to cancer last Christmas, after she was diagnosed with brain cancer in late August 2010. Her doctors told here that she had 6-9 weeks to live with no further treatment, maybe 4-5 months with radiation/chemo therapy. She called me to ask my opinion on what I would do if it were me. I told her that she has to make that decision on her own based on what quality of life while fighting the cancer she wanted. From my understanding, radiation/chemo therapy can be very debilitating and she was to have 7-12 weekly treatments....so that would be 2-3 months of mostly bedrest and bathroom time....which would supposedly almost equal her extended life. So I told her that if it were me, I go for the shortened higher quality of life, where I could visit with family and friends, still get out and do the activities she wanted until such time the cancer put her down. With the treatment, and damage to the immune system, visiting with family and friends would be very limited. In the end, I learned that she called each of her brothers (3) and sisters (3) and asked the same question. All of us brothers told her we'd take the quality with a shortened life....all of her sisters told her they would take the treatment for an extended life. (that should be a study in itself..lol) Her intitial decision was to not seek treatment but after four to five weeks, decided to go with the radiation/chemo treatment. She went down hill very rapidly after the second treatment, and never recovered. She ended the treatments after 4 were completed. From early November till she passed away Dec. 26th, she was bed riden, and totally exhausted. Visits from anyone were only for a few minutes.
Now whether she would have experienced the same without the treatment she did have, I can't say. But I feel that if she wouldn't have had the treatment, she probably would have lived just as long or perhaps even longer, and her quality of life would have been much more joyful.
Thankfully, she and her husband, children and grandchild, along with our dad were able to celebrate Christmas on the afternoon of Dec. 23rd. She fell asleep about 7pm that evening and slept till she died on the morning of the 26th.
A long story to cover my first paragraph, but wanted you to understand why I said what I said.
Sometimes we just have to leave well enough alone.
Keep fighting, and stay positive. (Caring1) Dan
Thanks Dan for the confirmation of my decision. I was already second guessing it and just re-read your post. It helped me once again clarify my thinking and I still feel not taking the drugs is the right choice for me, at least for now.
ReplyDeleteI am sorry about your sister. I lost my mother to cancer several years ago. Even though she had lived a long and happy life it was still hard to watch the cancer take over her body and take her away from us. If your sister had called me I would have told her the same as you did (there goes your male/female theory. lol) In fact that is the advice I gave my mom. Gratefully, she didn't go with the treatments (the cancer had already spread through most of her body) and was able to have some very high quality time with her family right up till the end.
I have already told my husband if I ever get cancer, there would have to be an overwhelming high chance of recovery before I would ever consider the chemo treatments. If not - I will maintain as much quality of life as possible even if it means dieing sooner. I know it's easy to say that now, who knows what I would say if the time really came. I hope it never does!!!
Thanks again for caring enough to comment, Dan. It means a lot to me and it was a huge help.
For others reading this blog, Dan takes full time care of his wife who has severe Parkinson's symptoms. He truly is a "caring one"!!!