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

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

@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.

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.

Is there an organization that helps pay for Crexont 52. 5 mg/210 mg?

Hello @cheryllynn1003, Welcome to Connect. The manufacturer's website has a list of programs to help along with some other resources that might be helpful - https://crexonthcp.com/support/. Drugs.com also has some information on help with the costs - https://www.drugs.com/price-guide/crexont.

I am 87 years old male just diagnosed with Parkinson’s. I’ve had hand tremors for years but tremor is now in the mouth when tired or stressed. Just starting carbidopa/levodopa with concern about side effects. I have light Meniers disease with vertigo at times.

@knightkris In some states they have Parkinson programs at the YMCA. Get in touch with your local Parkinsons Association. Look for Podcasts from the Parkinson Association after you join. You will be able to get some infomation to help understand the symptoms and maybe help you and your loved ones to understand Parkinsons. mayoconnect is a great resource. Having three family members with Parkinsons has encouraged me to learn as much as possible. 🫂💕

Hello, new to this group. I have been having tremors for 4 months with sleep problems, confusion and brain fog and isolating from friends because of it. I went in to a neurologist today and they have scheduled an mRI and neuro-psych testing next month. without a firm diagnosis yet she said I have what appears to be parkinson's tremors. That really frightened me and after 3 hours of emotional crisis i have calmed down. I am looking to be in a support group to learn more about the early stages of parkinson's, and support. thank you, mary

@mimisayhi
Hello Mary, and welcome to the PD support group on Mayo Clinic Connect. Most of us with this diagnosis can relate to your feeling of emotional crisis. It is a hard diagnosis to get used to.

The early stages of PD can vary from person to person. In my case, gait problems (staggering when I walked rather than walking in a straight line), balance problems that included dizziness and vertigo, as well as a very soft voice. I've never experienced the tremors that most people have.

Here is some information about the symptoms, causes, and treatment for PD from the Mayo Clinic website,
https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055
Here is information from the Parkinson's Foundation website that lists 10 early signs of PD:
https://www.parkinson.org/understanding-parkinsons/10-early-signs
Do you recognize any of the symptoms mentioned in this article? I look forward to hearing from you again. We are here to listen and support you!

Hello, my name is Chris and I am 66 years old and had a DAT scan yesterday, and got the results today on my chart. Would love some help understanding the results.