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Posts (64)

Tue, Jun 23 7:48am · Which doctor??? in Parkinson's Disease

It’s Susan.
Haven’t been on for awhile, but doing okay. Always read everyone’s posts however. I was diagnosed with PD two years ago and was given a neurologist at the Rochester Mayo for a second opinion. I really like him, but I am beginning to wonder if he is the right neurologist to see since I have found out his specialty(can’t remember what though), is NOT PD. Not even listed as an area of interest for him. I see there are a number of other neurologists at the Mayo who are PD specialists. When I saw him last December I asked him about other PD meds(just curious what he would say since the Sinemet was working well for the most part). I have read about and heard from other PD patients about a number of other drugs. He said that the other drugs were based on Carbidopa Levodopa. Is this true? I would appreciate everyone’s feedback.

Sat, Jan 4 7:10am · Deep Brain Stimulation (DBS) for Parkinson's in Parkinson's Disease

So very sorry to hear about your friend. I will keep you both in my thoughts and prayers.

Dec 27, 2019 · Constipation and Parkinson’s. in Parkinson's Disease

Thx Oronogo for your advise. I do eat prunes from time to time, but never warm. My pelvic floor therapist recommended a warm beverage in the am. Warm prune juice might help. Thx again.

Dec 27, 2019 · Constipation and Parkinson’s. in Parkinson's Disease

Hi January Jane. WOW! I am blown away by your post. Everything you say you experience with the constipation and the things you do to cope with it are dead on with me. As I say, ditto, ditto, ditto and ditto again. Yes, I was just recently diagnosed with pelvic floor dysfunction and am getting set up to have the therapy. Both my doctor and therapy nurse say I am a really good candidate. I am willing to try anything. Thanks again for sharing your experience.

Sep 11, 2019 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

You certainly are not alone. All the best to you!

Sep 9, 2019 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

Hi Dan. Glad to have you join the group! I’m 63 and was diagnosed last December with PD. Like you, I had been having symptoms for a year or so before I went to see my internist (who suspected I had PD) who then sent me to a neurologist. Then got the firm diagnosis. I strongly suspected that I had some neurological problem, which started with me not swinging my right arm when I walked, but it took me awhile to see my doctor. As time wore on, I became somewhat unsteady on my feet, major constipation, started to have my handwriting get uncontrollably smaller as I wrote, had problems with strength issues, difficulty getting in and out of coats, putting earrings in, some muscle rigidity and by far worse had a lot of pain in my right arm. Haven’t had the tremors at this point. My doctor said that I was in the very early stage of PD.
My neurologist put me on Carbidopa/ Levodopa and started me on 1 25-100 mg tablet 3x a day. He gradually wanted me to increase from the 1 tablet 3x a day to 2 tablets 3x a day. The increase was to happen very slowly over quite a few weeks. Anyway, when I was up to 1 1/2 tablet in am and 1 tablet in the afternoon and 1 tablet at night I started to have the same effects from the medication that you are experiencing. Light-headed, real fatigue(I am an active person and walk a lot), dizziness, felt out of it and nauseated. I was miserable. Felt like all I wanted to do was sit around and was afraid to eat for fear of more nausea. My neurologist told me to cut back to the beginning 1 tablet 3x a day. Side effects pretty much gradually disappeared. Unlike you though, the medication has pretty much eliminated my symptoms, except for the constipation(pretty severe), which I am working on. I still do have a bit of nausea from time to time during the day, but it is manageable.
To “put it into a nut shell”, I can certainly relate. Hope things get much better for you! Just wanted to pass along my experience.

Aug 27, 2019 · Constipation and Parkinson’s. in Parkinson's Disease

Thanks so much Teresa! You always have such good information and advice! As you have read(I would imagine) my replies to the others who have written me, I have done the Miralax thing with very little success. My stools aren’t hard and dry, but soft even without the Miralax. Just doesn’t work. Will definitely watch the videos today that you have sent. You are a GREAT mentor!!!

Aug 27, 2019 · Constipation and Parkinson’s. in Parkinson's Disease

Thank you Lisa! As you can see from my other replies, I have tried Miralax daily at my GI doctor’s suggestion, for numerous weeks from time to time. Very little if any relief. My stool is soft enough, not anything like diarrhea, even without the Miralax, but it just won’t come. I feel stuffed. Sounds strange, but I find myself wishing I had diarrhea from time to time. Sounds pretty sick to say this, doesn’t it.