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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?
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HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
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@hopeful33250 I appreciate your interest. Yes, I can’t promise to post regularly but I will. Everyday, there is a need for more assistance and more money is being spent. Right now, I’m in need a of geriatric care manager. In NYC, the lowest I found so far cost $200. an hour.
I was diagnosed with PD in June 2025 and put on Carbidova-Levadopa. Can only function on half a .5mg pill morning and at bedtime. Seeing a movement disorder specialist. Fatigue overwhelms me a good deal of the time which prevents me from keeping up with daily living. About 2 weeks ago I decided to request blood tests to rule out any deficiencies. Sure enough, my ferritin level was only a "9" and I saw a hematologist who had me come in for a blood infusion. Now the infusion is causing fatigue but hoping I can regain some of my lost energy.. Anyone else deal with PD fatigue and on meds that help for this??
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1 Reaction@janetgeller9 I'm so glad to hear of all of the progress you have made in taking care of yourself! Please accept my virtual hug and continue reaching out and finding the support you need.
Will you continue to post and let me know how you are doing?
@hopeful33250 Yes, Thsnk you for reaching out. I’m pretty isolated. Friends and family no longer live in NYC which is where I live. I have a lot of telephone support but no live persons to give me hugs, hold my hand, etc. We married late and do not have children. While friends tried to be helpful on the phone, I’ve faced all of the big decisions alone and by myself, all while grieving the decline of a vital man. I’ve gotten myself some help-a social worker for support and resource finding, a therapist to work through my feelings. I’m the kind of person with mobilizing anxiety-I don’t stop until I get it done. When getting it done was finished, I could cry when alone. I’ve taken myself out to dinner from time to time and while I’m OK eating alone, it’s no fun.What has helped me is distance walking almost daily, blitzing out over TV where I could forget about my troubles and getting enough sleep. The biggest challenge was accessing our money which I now have control over and am the POA. I recently joined some organizations in order to make new friends and get involved. There are still many things to take care of but the really big ones are more in control now.
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5 Reactions@hopeful33250 Thank you so much.
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2 Reactions@hopeful33250 thank you so much.
@janetgeller9
I appreciate your sincere post about your life after placing your husband in memory care. What a brave decision to make! It sounds like he has adjusted to this new normal, but I can understand how difficult it is for you.
It is essential for you to find a support system. Do you have friends that you can call and perhaps get together for lunch or a movie? If not, what about joining a community-based group? Many public libraries, as well as community senior centers, offer classes and social groups where you can discuss books, play cards, or participate in activities with other senior adults who are also living alone.
Will you share a bit about your family and what friendship groups you might be able to connect with?
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1 ReactionThe Davis Phinney Foundation hosts a monthly webinar for people with PD and their caregivers. Here is information about this month's speaker.
Join us for our November Live Well Today webinar featuring Dr. Christina Swan. In this webinar, Dr. Swan, a movement disorder specialist from Rush University, will discuss the advanced or “next-step” treatments you and your care team may consider if your Parkinson’s symptoms are becoming complex.
Dr. Swan will discuss extended-release and infusion medications, deep-brain stimulation, focused ultrasound, and more. We’ll also discuss the right questions to ask your doctor so you can make informed decisions.
While Dr. Swan will not be able to provide individual recommendations, her deep experience and passion for helping those with advancing Parkinson’s symptoms will help you as you consider how to live well, today and in the future.
Live Well Today Webinar: "Advanced and Next-Step Parkinson’s Therapies: What You Need to Know" Featuring Dr. Christina Swan
When: Thursday, November 6, 2025, at: 9 am MT/Denver; 8 am PT/Los Angeles; 10 am CT/Chicago; 11 am ET/New York time
In order to register for this webinar, please go to the Davis Phinney Foundation website.
@colleenyoung I’m a caregiver for my almost 86 year old husband with Parkinson’s and dementia. I’m a young 84 but 5 feet tall and weigh 100 pounds. For 2 years, I’ve taken care of my husband myself. At that time, his symptoms were pretty mild but he did have a few unmanageable incidents. Ultimately, I could not manage him and after 2 serious incidents where I had to call 911, as of August 12, 2025, I placed him in a memory care residence. His symptoms are primarily cognitive. I am just coming out of a terrifying and traumatizing nightmare of activity and emotions related to his swift decline. At the same time as I was grieving the loss of him and suddenly living alone, I had to get control of our assets from someone who had been in charge of it all and could not tell me anything about anything due to his cognitive loss. Things have mostly settled down now. My agonizing over whether I made the right decision about putting him in a residence when every day he was desperately pleading, threatening, or trying to leave is mainly over. He’s now more adjusted to his situation although he really hadn’t grasped his condition and still thinks it will be over one day and he’ll come home. He has times when he’s lucid and my heart sings only to be broken again when he regresses. At the age of 84, I am faced with making a new life. I tried the caregiver’s group once before but couldn’t face being in it. I’m not in denial but I still don’t know if I want to focus like this.
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3 Reactions@emmys - a discussion of carbidopa/levodopa (Crexont) all by itself would be a really good one, if you'd be willing to start it. You'd go to the home page for the Mayo Clinic Connect Parkinson's Disease support group, https://connect.mayoclinic.org/group/parkinsons-disease/, and scroll down to just under the blue box on the left side to click on "Start a new discussion."