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

@lisalucier hi Lisa, I wanted to let you know that I really appreciate the information that you have sent. I haven’t had the opportunity today to read any of it. That’s why I haven’t replied before now. But I wanted to let you know that I did just make a reply to hopeful33250 about symptoms that I’ve been having. I will get back to you as soon as I’ve read the info. Which I will do today. Thank you for your help.

@hopeful33250 I have had many symptoms over the years that progressively have gotten worse. The one that brought me to the doctors office recently was at the urging of my daughter because of my tremors, face hands, etc., and my poor balance issues. I fell in the tub last year. But I’ve had the no sense of smell, constipation, big time, memory issues, the inability to express myself the way I think in my head for it to come out my mouth that way. So cognitive issues. I also have Sjogren’s disease, diabetes, and a host of other elements. I live with chronic pain so those things I attributed to arthritis. I suffer from depression so many things that I’ve had over the last couple of decades, but they all were like they seemed to me to be not related at the time. I even said to my husband at one point if I die, please have an autopsy done so that you can know what did it because I’m convinced that it’s one thing and not all these different things and I believe they’re all connected. I thank you for any information that you provide. I know that you cant interpret testing or anything like that. But any insight that you can give to me I would appreciate. Thanks, Chris.

Hello @chrissymc

I would like to join Lisa, @lisalucier, in welcoming you to the PD support group on Mayo Clinic Connect. As Lisa said, on Connect, we are patients like you who are here to support and encourage each other; we aren't medical professionals and therefore aren't qualified to interpret medical test results. I would encourage you to contact your doctor's office to discuss the results of the DAT scan.

In the meantime, I wonder what symptoms you were having that led to this scan. When I was first diagnosed, I was having an unsteady gait, balance problems, and a very soft voice. When I began treatment with carbidopa/levodopa, many of those symptoms improved.

Share as you are comfortable, a little about your most bothersome symptoms.

Hi @chrissymc - welcome to Mayo Clinic Connect.
We are not doctors and don't have medical training, but perhaps some of the members in the Parkinson's disease support group can share what they've learned from their own experiences with their doctors and their reading and research.

Here's some Mayo Clinic information on PD diagnosis, including a description of DAT scans:

Parkinson's disease: Diagnosis https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062.

You may also find this Connect discussion specifically on DAT scans useful:

- DAT scan for Parkinsons disease usefulness and cost https://connect.mayoclinic.org/discussion/dat-scan-for-parkinsons-disease-usefulness-and-cost/

Have you been experiencing symptoms that led your doctor to order this scan? If so, will you share more about what symptoms you've had?

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.

@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, 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

@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. 🫂💕

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.

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.