Last updated: January 2022
I diagnosed myself with PD, told my PC doctor, was referred to a neurologist who confirmed it. I already was in an assisted living place because of another problem. I had injured my hand and was in a brace, unable to drive or pick up anything. I think I had symptoms a year or two before being diagnosed and they were treated as digestive issues. Constipation was my worst complaint.
I tried so many things, none of which worked. I decided to go on a very restrictive diet. No meat, no high acidic foods, no dairy, no gluten, no salt, no sugar (I cheat sometimes), no caffeine, no carbonated drinks. I am allowed no alcohol except for red wine, some of which is good for my kidneys and also for pain as I can take only acetaminophen (Tylenol). It is extremely strict but worth it. I never thought I would see the day when I considered a normal, regular bowel movement as an accomplishment, but the diet has been a lifesaver.
Rare conditions and Parkinson's
I have Sleep Delay Syndrome with Circadian Rhythm Disorder and Non 24. Most people never have heard of it. It is a neurological degenerative disease with no cure. Even a lot of doctors don't know what it is. Many years ago, I was paid to be studied by the University of Md. and paid to be studied for months at the National Institutes (Yes, Grammarly, there is an s on the word) of Health. Because it is a rare disease it is considered a legal disability and it qualifies me for certain things.
I read a lot about PD and one thing irritates me. I was prescribed Neupro as a patch. It is very expensive, but because of my sleep disorder, I qualify for it. It is available in pill form much less expensive but needs to be taken 3 times a day, every 8 hours. I am unable to follow any sleep-wake schedule. Everyone I know except is on L dopa whatever, which has on and off times and all literature I read says nothing about the drug, rotigotine. Either I have a mild case of PD or the drug is marvelous. I don't understand why it seems as if no one knows about it. I have no on and off times. I have a tremor only when I am very tired. A couple of mon-motor symptoms are not bad. A little apathy is good for me.
Wishing peace and happiness
Like most people, I worry about the progression of this disease, but in general, I try to keep busy and feel good. The sleep delay has affected my life much more than has Parkinson's. I never had good handwriting, so that matters little. Not being constipated is my success story. It would be nice if everyone with this scary thing had the right medication since no one is without some concern about what is happening to them.
Volunteering always has been very important to me and there is a wing of this facility where people need assistance with almost everything. I enjoy going there because it gives me the satisfaction of doing something with my life. This whole story seems to be I,I,I,I. A psychiatrist told me I had experienced more tragedy and trauma than any patient he had before and that I had handled it well; certainly not a compliment or a rewarding evaluation.
I wish everyone with this or any other life-changing disease or situation peace and happiness. There is a quote from an old, long ago philosopher that expresses how I feel. It is too long to write here, but anyone can Google or look up a quote by Seneca on happiness.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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