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

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

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.

REPLY
@psvantx

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!

Jump to this post

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?

REPLY

@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.

REPLY
@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

I’m looking forward to being involved with this group…hoping my understanding of technology will be enough! 😌

REPLY
@ggopher

@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.

Jump to this post

Thank-you so much for the encouragment! 💕💕

REPLY
@lisalucier

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?

Jump to this post

Thank-you. My anxiety was raised by my PD diagnosis, but was already there. I stopped Zoloft due to dry mouth…..which has led to $13,000 worth of dental bills (3 implants) with no dental insurance. I need to avoid a repeat if possible! Certainly need to find anti-anxiety drug that will work w/o the dry mouth….haven’t had any luck asking drs. As for symptoms, I’m sure I’m in the early stages if PD….still able to move around with no probs. Have occasional drooling and infrequent balance issues (at 75, is it due to age or PD 🤷‍♀️)? The neurologist I need to see is booked out to July! Finally got in to see one who first told me I did NOT have PD, but a datscan in Dec. showed otherwise. He did prescribe the 2 meds,….haven’t started due to travel during holidays, but need to start! Meeting with a nurse tomorrow to discuss my concerns. Then wait for July! Thanks for listening….very encouraged to be in this group!

REPLY

I haven’t had a problem with the Clonazepam and dry mouth, though I was diagnosed with dry mouth yyears before. My son had a tooth implant with no insurance and it was in the area of $3 k and I thought that was outrageous.
I skipped the datscan. My neurologist said it wasn’t really needed since the symptoms were so obvious. Well, I hadn’t seen them nor had the doctors in Houston that gave me expensive “key man” executive exams every year. Follow instructions,but you’ll probably start small and work your way up to the desired dosage to be sure you don’t have any surprises. I’m 74 and only this past year quit driving at night and limit myself to close in known streets – 5 years after diagnosis.
Yeah, quality neurologists are hard to get in to see. One thing, if the meds work you’ll have answered that question.
Recumbent bike over at the Fitness center is supposed to help balance and exercise in general helps delay progression. The exercise is good for you either way, assuming the nurse says the sudden change won’t kill you! Write down all your questions, and answers, and good luck.

REPLY
@ggopher

I haven’t had a problem with the Clonazepam and dry mouth, though I was diagnosed with dry mouth yyears before. My son had a tooth implant with no insurance and it was in the area of $3 k and I thought that was outrageous.
I skipped the datscan. My neurologist said it wasn’t really needed since the symptoms were so obvious. Well, I hadn’t seen them nor had the doctors in Houston that gave me expensive “key man” executive exams every year. Follow instructions,but you’ll probably start small and work your way up to the desired dosage to be sure you don’t have any surprises. I’m 74 and only this past year quit driving at night and limit myself to close in known streets – 5 years after diagnosis.
Yeah, quality neurologists are hard to get in to see. One thing, if the meds work you’ll have answered that question.
Recumbent bike over at the Fitness center is supposed to help balance and exercise in general helps delay progression. The exercise is good for you either way, assuming the nurse says the sudden change won’t kill you! Write down all your questions, and answers, and good luck.

Jump to this post

Thank-you so much!

REPLY
@psvantx

Thank-you so much!

Jump to this post

Hello @psvantx,

Will you provide an update if you start taking the meds your doctor prescribed? I would like to know if they helped you.

Liked by Lisa Lucier, psvantx

REPLY
@hopeful33250

Hello @psvantx,

Will you provide an update if you start taking the meds your doctor prescribed? I would like to know if they helped you.

Jump to this post

Saw my doctor again this week to clear up some confusion….asked him how I could see improvement in my symptoms if I basicly don’t have any….yet! He agreed that i shouldn’t start the meds yet…..and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions…..wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

REPLY
@psvantx

Saw my doctor again this week to clear up some confusion….asked him how I could see improvement in my symptoms if I basicly don’t have any….yet! He agreed that i shouldn’t start the meds yet…..and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions…..wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

Jump to this post

Hello @psvantx

Thanks for your update. From what you said you have decided not to take any meds at this time. As I looked back at some of your original posts I see that you have had some problems with drooling and balance. These are certainly symptomatic of PD but it is hard to tell if they are bothersome enough to try meds or not. I'm supposing that they must not be too bothersome at this time. Is that the case?

I wish you well as you deal with this situation. Do you exercise on a regular basis? There are very good classes available for us seniors that help deal with balance issues. I would encourage you to look into them. Without exercise, I would be much more disabled than I am now.

REPLY
@hopeful33250

Hello @psvantx

Thanks for your update. From what you said you have decided not to take any meds at this time. As I looked back at some of your original posts I see that you have had some problems with drooling and balance. These are certainly symptomatic of PD but it is hard to tell if they are bothersome enough to try meds or not. I'm supposing that they must not be too bothersome at this time. Is that the case?

I wish you well as you deal with this situation. Do you exercise on a regular basis? There are very good classes available for us seniors that help deal with balance issues. I would encourage you to look into them. Without exercise, I would be much more disabled than I am now.

Jump to this post

Thanks…..thinking my balance issues were due to 3 UTI’s with meds including Cipro! Cipro did a number on me…..I seem to be doing better in that regard. Plan to monitor closely!

REPLY
@psvantx

Thanks…..thinking my balance issues were due to 3 UTI’s with meds including Cipro! Cipro did a number on me…..I seem to be doing better in that regard. Plan to monitor closely!

Jump to this post

Good plan, @psvantx. Don't neglect exercise, though. It is important as we age.

Liked by psvantx

REPLY
@psvantx

Saw my doctor again this week to clear up some confusion….asked him how I could see improvement in my symptoms if I basicly don’t have any….yet! He agreed that i shouldn’t start the meds yet…..and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions…..wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

Jump to this post

Well, #psvantx, looks like we both got some good news yesterday. I had my regular 90 day check and no changes to meds are needed. Doc says I should make 20 more years. Being 74 now, that seems a little ambitious.
As to why your last few visits seemed contradictory, the disease is so different to each of us that figuring out what any one symptom is caused by and best treated by what is a real moving target.
For example, my dizziness turns out to be simple low blood pressure and can be fixed by raising the head of my bed 2 inches and adding a pinch of salt to dinner. And exercise is god for PD and most every thing else. After all, if part of the problem is junk in the brain, you need more blood flow.
Even diagnosing it is tricky, I had really expensive Executive Physicals in Houston’s best hospitals annually for 9 years with many of the classic symptoms and no one caught it until I gave in to the symptoms and retired to a mid-sized Texas town and in my first visit to a PA was diagnosed by him just watching me sit for a few minutes.
So, hope you have a great New Year and maybe I’ll see you down the road.

REPLY
@ggopher

@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.

Jump to this post

Thank-you so much…..this is very helpful and encouraging! 😘

REPLY
Please login or register to post a reply.