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?

@jdb

Hi this is Dan. I'm a 68 year old male that lives in the woods of northern Wisconsin. I have numerous symptoms that led to a decent Parkinson's Disease diagnosis. The diagnosis helped to explain some of the symptoms that I was experiencing in the last, oh actually, couple of years. At this point in time I feel like I am able to deal with the symptoms. Probably most frustrating is the unpleasant reactions to the carbidopa-levodopa medication. Not seeing any positive effects after a month-and-a-half on the medication. Basically feel light-headed, dizzy, disoriented, fatigue while taking this medication. I'm seeing a new neurologist tomorrow and hopefully willl get some guidance on how to deal with this medication issue. Is this reaction to the carbidopa-levodopa uncommon?

I just have minor tremors in my right thumb. I've been doing a lot of research on dealing with Parkinson's. Luckily for me I enjoy vigorous exercise and continue to do that. I'm also looking into starting Big and Loud therapy.

in 1992 I had a serious accident that resulted in numerous fractures in my right leg. This makes exercising more difficult just dealing with the pain and swelling. Though complicated, I'm looking into a knee replacement sometime next spring if I feel that I have a handle on dealing with the PD.

Thanks for your help. I look forward to being a member iof Mayo Clinic Connect

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Hi @jdb,
Thanks for providing some more information regarding your adjustment to PD and especially to the meds. I'm wondering about your reaction to the meds. When you started the meds did your doctor titrate the meds? In order words, did you start with a small dose for the 1st week and then increase the amount the next week? My titration went over a 5 week period, where I started with a 1/2 tablet of the carbidopa/levodopa for the first week and then increased by 1/2 the following week until I was up to 3 full tablets a day. This is the easiest way for your body to adjust to this particular type of med.

I'm glad that you will be seeing a new neurologist tomorrow. I hope you get some help with the med problem.

I look forward to hearing from you again. Will you post an update after you see the doctor?

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@hopeful33250

Hi @jdb,
Thanks for providing some more information regarding your adjustment to PD and especially to the meds. I'm wondering about your reaction to the meds. When you started the meds did your doctor titrate the meds? In order words, did you start with a small dose for the 1st week and then increase the amount the next week? My titration went over a 5 week period, where I started with a 1/2 tablet of the carbidopa/levodopa for the first week and then increased by 1/2 the following week until I was up to 3 full tablets a day. This is the easiest way for your body to adjust to this particular type of med.

I'm glad that you will be seeing a new neurologist tomorrow. I hope you get some help with the med problem.

I look forward to hearing from you again. Will you post an update after you see the doctor?

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Did you go up to 3 tablets per day, or 3 tablets 3 times a day?
Yes, the meds were titrated. They were to increase weekly 1/2 tablet more 3 times per day.

I'll check back in after my appt.

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@jdb

Did you go up to 3 tablets per day, or 3 tablets 3 times a day?
Yes, the meds were titrated. They were to increase weekly 1/2 tablet more 3 times per day.

I'll check back in after my appt.

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@jdb I just titrated to 3 tablets a day. Since then I've changed up my meds somewhat. Now I take 2 a day and mid-day I take a tablet of carbidopa/levodopa/entacapone. The last ingredient, entacapone, helps the carbidopa/levodopa to last longer. I really like this much better. A consistent exercise program will help you maintain greater flexibility and range of motion and help keep stiffness at-bay. Stiffness can be a real problem with PD.

I'm glad to hear you are considering the Big and Loud program. They are very helpful. Do you have a problem with soft speech?

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Please read the responses to knee surgery before you have the knee replaced. It is nothing to "look forward to". Much heart ache and wondering!

I am talking about another Mayo section, like the Parkinsons section, that has 100's of responses in negative statements. (Worse than negative, if you can imagine.)

I have had 6 knee surgeries – four about knee replacement and two for other reasons. I am in constant pain from those related to TKR (the shortened form of "the knee replacement!). Was diagnosed with Parkinsons some years ago, and stopped taking the carbidopa-levodopa when we found it wasn't working. We found out the tremor in my right hand are "essential tremor" so no Parkinsons med would work for that (no other med works for extended periods of time, either).

Good luck, Hate to find folks like me — dual diagnosis, if you will! Please read the TKR section before you have it done.

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@hopeful33250

@jdb I just titrated to 3 tablets a day. Since then I've changed up my meds somewhat. Now I take 2 a day and mid-day I take a tablet of carbidopa/levodopa/entacapone. The last ingredient, entacapone, helps the carbidopa/levodopa to last longer. I really like this much better. A consistent exercise program will help you maintain greater flexibility and range of motion and help keep stiffness at-bay. Stiffness can be a real problem with PD.

I'm glad to hear you are considering the Big and Loud program. They are very helpful. Do you have a problem with soft speech?

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@teresa, Volunteer Mentor – My response to @jdb@trouble4343 – was credited as a reply by hopeful3250. Sorry! this is from trouble4343. Can it be fixed? And maybe expanded to say the "actual name" of the section on knee surgery?

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@trouble4343

@teresa, Volunteer Mentor – My response to @jdb@trouble4343 – was credited as a reply by hopeful3250. Sorry! this is from trouble4343. Can it be fixed? And maybe expanded to say the "actual name" of the section on knee surgery?

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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.

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@jdb

hi this is Dan or jdb I was recently diagnosed with Parkinson's disease and I'm just starting to deal with it I have questions regarding medication exercises and what to anticipate it seems to be a good idea to become a part of this discussion group and I'm totally new to this so I could use some input as to how to get going. I did post something last night and I don't even know how to find it but I'm sure in time I'll get this all figured out glad you have this forum and I look forward to being a member of it thanks.

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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.

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@trouble4343

Please read the responses to knee surgery before you have the knee replaced. It is nothing to "look forward to". Much heart ache and wondering!

I am talking about another Mayo section, like the Parkinsons section, that has 100's of responses in negative statements. (Worse than negative, if you can imagine.)

I have had 6 knee surgeries – four about knee replacement and two for other reasons. I am in constant pain from those related to TKR (the shortened form of "the knee replacement!). Was diagnosed with Parkinsons some years ago, and stopped taking the carbidopa-levodopa when we found it wasn't working. We found out the tremor in my right hand are "essential tremor" so no Parkinsons med would work for that (no other med works for extended periods of time, either).

Good luck, Hate to find folks like me — dual diagnosis, if you will! Please read the TKR section before you have it done.

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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.

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@ggopher

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.

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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.

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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.

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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.

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

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@jdb

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.

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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.

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