Living with Parkinson's Disease - Meet others & come say hi

Hi @trouble4343, welcome back. It's been a while since we've heard from you. I really appreciated your post to jdb. It was correctly credited to you. At the bottom of your message it says "Liked by Tesesa, Volunteer Mentor", which means that Teresa liked your post, not that she wrote it.

@jdb, here is the link to the discussion group about Joint Replacements: https://connect.mayoclinic.org/group/joint-replacements/
In this group, you'll find many discussions about total knee replacements as recommended by @trouble4343.

Hi Dan,
As you have no doubt heard, every PD case is different. I’m Steve , I’m 74 and 4 years after diagnosis of Agent Orange presumed PD, it is not my main concern. I’ve got other things that are harder to handle on a daily basis like some of the other people have already responded. Just keep things in perspective and deal with what you need to each day. I firmly believe I’ll see a cure or at least some sort of indefinite remission in the next few years. That makes this a temporary inconvenience. Works for me. Do your part - take your meds, exercise, and stay positive. And keep all your doctors in synch.

Thanks! I'll read theTKR section for sure. I've had 5 surgeries so far on my right leg and don't take a decision to have more surgery lightly.

Hi Steve. I'm doing my best to stay positive, getting a lot of aerobic exercise and trying to figure out the med program that works for me. Glad to find this forum as I navigate through this new normal.

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.

Thanks Susan. I'm still trying to get my meds figured out. Sounds like you had similar issues with yours till you finally got the right dosage dialed in. I'm hoping to get there soon. It was reassuring for me to hear that I'm not alone in working through this.

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

Hi @jdb, As @susan62 said it takes a while to get the meds at the right level. When I first started taking them I felt so much better so I thought more would be better, but it wasn't.

I have really found that less is better if I add in Stalevo which is carbidopa/levodopa and entacapone. Unfortunately, it is not on many of the formularies so you have to pay out of pocket. I use Good Rx Gold and purchase at Costco, which helps, but it is still expensive.

I saw an interesting Mayo Clinic article on my Facebook feed that I thought I would share with this group.

Researchers look at possible link between low vitamin B12 and Parkinson’s symptoms
-- https://advancingthescience.mayo.edu/2019/06/26/researchers-look-at-possible-link-between-low-vitamin-b12-and-parkinsons-symptoms/

I have recently been diagnosed with Parkinson’s.....my biggest fear.....after watching my mother and brother suffer and die from it! First was told I didn’t have it (RELIEF), but the datscan said otherwise! 😢. Evidently, I’m in the early stages....was prescribed rasagiline and carbidopa-levodopa. After reading about the drugs/side effects, I decided not to start it yet. Any thoughts, suggestions? Needless to say, my anxiety is through the roof!