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.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Hi,
my name is Joel

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Hello, my name is Bernadette and I have had Parkinson’s for 10 years. My biggest concern is whether I am on the right medication.

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Profile picture for knightkris @knightkris

I am sure your husband dosn't feel to good about the fact that he is having this issue. And he does know what is going on. I spent many years, i mean many years taking care of my mother. Who knew what was happening and others thinking she did know anything. We are always there.

But I am here to speak on the issue of Parkinson. I was diagnosed with PD last year and with Fibromalgia this year. I have a tremor in my right arm, have problems holding onto things. My doctor tells me I have early stages of the disease. I am an artist and writer. This is causing me a great deal of depression. I have other issues as well.

Others think that there is nothing wrong with me, that I am making all of this up. You don't have Parkinson's I is all in your head. Between these two diseases, it is hard for me to even hold down a job. I can't even get disability. I feel very discriminated against

I am new to this. I am only 55 years old and it feels like I have been given a curse. I spent most of the last 15 years taking care of my mother. she passed away this pass January. And this is what happens. I now I shouldn't feel I deserve something else.

I didn't take care of my mother for applause. I did it because it was the right thing to do.And I would never trade what I did for anything in this world. It was the best gift I could of ever received from GOD,.I would do it again in a heart beat.

But to have be given these two diseases

Thank you

Kris Schmuland

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@knightkris You poor love to have PD and fibromyalgia. The pain and fatique as well as PD symptons will be hard to handle. My advise is to eat well ( look up Mind diet) sleep well, challenge yourself with exercise and socialise as much as can.

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Profile picture for neenee2024 @neenee2024

I'm relatively new to Parkinson's as well as to support groups. Parkinson's seems to attack all my weaknesses: physical as well as psychological. It's hard to get a break from worrying about the future. I'm sorry if this is too much for a first post!

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@neenee2024 Not at all. You started the first step and reached out. I can tell you if it was not for this site I would have felt more alone. Please continue asking questions and fears. We will lift you up. Remember no question is off the grid. If it bothers you then it bothers others. Best support as a Caregiver I have had. Hugs to you!

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Profile picture for bern7475 @bern7475

Hello, my name is Bernadette and I have had Parkinson’s for 10 years. My biggest concern is whether I am on the right medication.

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@bern7475 - what medication are you taking right now? What concerns do you have with it?

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In reply to @thelasthaunting "Hi, my name is Joel" + (show)
Profile picture for thelasthaunting  “Joel Howard “ @thelasthaunting

Hi,
my name is Joel

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@thelasthaunting - hi, Joel, and welcome to Mayo Clinic Connect.

Have you or someone you care about been diagnosed with Parkinson's? If so, what are the major symptoms you or they experience?

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Profile picture for bern7475 @bern7475

Hello, my name is Bernadette and I have had Parkinson’s for 10 years. My biggest concern is whether I am on the right medication.

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Hello @bern7475

I see that you are concerned about your Parkinson's medication. There are many medications used to treat PD. Carbidopa/Levadopa (C/L) is the typical medication that most PD patients begin taking. Is this the med that you are currently taking?

Are you concerned because the medication is not treating your PD symptoms?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @bern7475

I see that you are concerned about your Parkinson's medication. There are many medications used to treat PD. Carbidopa/Levadopa (C/L) is the typical medication that most PD patients begin taking. Is this the med that you are currently taking?

Are you concerned because the medication is not treating your PD symptoms?

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@hopeful33250 I think that I’m just not on the right dosage. My symptoms return at about 2 hours after I take the c/l. The time released Rytary doesn’t do much better .

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Profile picture for bern7475 @bern7475

@hopeful33250 I think that I’m just not on the right dosage. My symptoms return at about 2 hours after I take the c/l. The time released Rytary doesn’t do much better .

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@bern7475
It sounds like you need to talk with your doctor about an alternative treatment. There are many meds to treat PD, and if you are having a lot of off-times, it may be a good time to have a conversation with your doctor.

What symptoms are the most bothersome for you during your off times? Is it tremors, balance, or something else?

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I am in the process of doing that now. Fingers crossed that we find the right medication/ combination.

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