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

@psvantx,
I was diagnosed in late 2014 and put on Sinemet immediately with Azilect being added some months later.
I have not had a significant problem, just a little stomach fullness and a tiny bit of unrest. I had almost no experience with or knowledge of PD which has enabled me to take it in in small bites and has held my anxiety to what half a Clonazepam twice a day controls.
I would highly recommend you try the pills. I belong to two in-person support groups and have never heard of anyone who reacted significantly to these two drugs. Sure. 1 in whatever thousand may have some sort of issue but the rest don’t. You don’t stay in your bedroom because driving to the store is hazardous do you? After 5 1/2 years most people are amazed that I have PD. Not saying you will be as fortunate as I am, at 74 it won’t kill me, but it is a quality of life thing.
Let us know how it goes-we're on your side. Get plenty of exercise, eat right and enjoy life. This is just a speed-bump.

Hello, @psvantx - I wanted to add my welcome to Mayo Clinic Connect along with @hopeful33250. That sounds really hard having your biggest fear come true with getting a Parkinson's disease (PD) diagnosis recently after watching your mother and brother suffer and die from the disease. I have never had a PD diagnosis, but have had high anxiety before with high-stress situations. I recognize that is a difficult way to live.

Since you are currently thinking over the side effects you read about the medications prescribed for your Parkinson's, rasagiline and carbidopa-levodopa, I'm hoping that others can come in and talk about their (or a loved one's) experiences with these medications. @psvantx, please meet @susan62 @jdb @ggopher @trouble4343 @anna1060.

I'd also like to invite other members who've talked about these two medications in various Mayo Clinic Connect discussions —@safari1949 @mjfelder1 @maxaz1 @stephenmcelroy @justinian @gwgrover — to share any side effects or lack thereof they (or someone close to them) has had with taking rasagiline and/or carbidopa-levodopa.

psvantx, you talked about your anxiety being through the roof at this point. Is this due to the diagnosis, what you read about potential medication side effects, or something else?

Hello @psvantx and welcome to Connect!

Yes, I understand your anxiety. I felt the same way when I was diagnosed. Please remember that all medicines have side effects for some people but they don't necessarily mean that you will have them.

I do not know what your worst symptoms are right now, but mine was a combination of balance, foot-dragging and gait disturbance. The carbidopa-levodopa really helped that. Exercise is really important if you have PD. There are many good physical therapists that can help you develop an exercise program that will benefit you. There is a video called, Delay the Disease, which is taught by a physical therapist who has had success in treating PD patients. You might look into that as well as seated Tai Chi classes. There are also PD dance classes (seated) which are exceptionally good. Find an exercise program that works for you.

Please share as you are comfortable doing so, what kind of symptoms you have and if you have tried any of the meds.

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!

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/

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.

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

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.

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.

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.