I strongly suggest that a Parkinson's patient experiment with various electronic games on a phone, tablet, or computer. Try a variety of games/puzzles that involve sorting, arranging, and/or logic before resorting to the above-mentioned drugs. After abruptly waking up with 2 broken ribs early last year because of a horrific night-terror, I feared that I would be given one of these drugs. I had recently started playing games while accompanying my husband on out-of-state trips to deliver packages. I noticed that the day before this terrible nightmare, I had not played any games on my phone as I had been busy with more important tasks. I decided to reassess my priorities. The more I play these games, the less disruptant I find my dreams to be. I now see that I need to play games on my phone to exercise my brain to be as important as my daily medications and daily physical exercise, maybe more. My Neurologist agrees.

I should add to my earlier statement that my experience has been that it is very difficult to find doctors who are knowledgeable about Parkinson’s Disease and are interested in learning more about it. If you ask your doctor to refer you to someone you frequently end up being referred to his golf buddy. Also, for us everything starts with the autonomic nervous system which controls all of your involuntary functions. For the specialists, everything may start and end with the organ they specialize in. They may prescribe something that is contraindicated for Parkinson’s Disease. For example, my cardiologist wants to prescribe a beta blocker for me because I have mitro valve prolapse. The problem is that beta blockers lower blood pressure and the last time I was on medication for hypertension I came close to passing out on several occasions.

Thank you, Maria. Actually, my neurologist does not coordinate my care. I see him once a year for check ups since there is nothing he can do for me for medication. Sometimes I send him a note through My Chart if I have any questions. It is always the fellow who responds. I don’t have an advocate or someone who comes with me to appointments. What I have found is that if I bring my husband to my appointments it is as if I don’t exist. The doctors direct everything to him. It is as if God has entered the room. I use the calendar on my IPad/phone to manage my appointments. Everything is linked including my watch.

Hi Maria! All of my symptoms are non motor and I see multiple specialists depending on the symptoms I’m being treated for. Some symptoms such as my loss of sense of smell do not have any treatment. I see a sleep specialist for my RBD and RLS. I take time-release Melatonin for RBD. My doctor determined that my ferritin level was low which was causing my RLS so I am on iron therapy and I also take gabapentin. My optometrist prescribed a prism in my glasses to treat my double vision. My GI doctor has me on 3 medications for constipation. I also see a cardiologist and also another doctor for my overactive bladder. Each organ or symptom has its own specialist. When a new problem shows up I generally ask my neurologist for a referral to a specialist who is knowledgeable about issues related to PD.

Good information! Thank you Lucinda!