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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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.

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rhona | @rhona | Nov 6 1:33pm
In reply to @js2022 "I was diagnosed with PD in June 2025 and put on Carbidova-Levadopa. Can only function on..." + (show)
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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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@js2022 I had to have 2 infusions before I felt better. My ferritin was 4.

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js2022 | @js2022 | Nov 6 6:55pm
In reply to @rhona "@js2022 I had to have 2 infusions before I felt better. My ferritin was 4." + (show)
Profile picture for rhona @rhona

@js2022 I had to have 2 infusions before I felt better. My ferritin was 4.

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@rhona how long after the 2nd infusion did you start to feel better? My hematologist is surprised one week after my infusion and I still feel great fatigue.

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susanrg | @susanrg | Nov 7 8:13am

Hi! I am 74-years-old and live in California's Central Valley. I was diagnosed with Parkinson's in 2023, but I had symptoms for two or three years prior to that. I get most of my healthcare needs met by a wonderful team at Stanford, which is three hours away. But now we are all facing Medicare cuts for video (telehealth) appointments. Medicare will no longer pay for the visits, which I have depended on for many years. I have a choice. I can pay out-of-pocket for my appointments or lose my medical team. This morning I will pay $255 to talk to my neurologist. This is not the answer. I would like to hear about how other patients with Parkinson's are handling this.

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