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@louiem777
Hello Louie and welcome to the PD support group on Mayo Connect. I'm glad that you found this forum. This is certainly a recent diagnosis for you, and I really applaud you for your desire to learn as much as you can! Education about a new diagnosis such as PD will help you to take positive steps towards a feeling of being in control.
As you are wanting to learn more, I'd encourage you to visit The Davis Phinney Foundation website. Here is a link,
--Davis Phinney Foundation
https://davisphinneyfoundation.org/
Under the "Resources" tab you will find a great collection of videos about PD that are presented by both doctors as well as PD patients and sometimes, doctors who are also PD patients!
As you undoubtedly know, exercise is one of the best adjuncts for keeping PD disability under control. Most of us who exercise on a regular basis tend to have better outcomes. I always say that PD is not a disorder that you can "take laying down." There are many free, videos on YouTube with PD exercises that can help. There is also physical therapists who are specially trained in PD therapy.
If you want to go to in-person classes, there are Rock Steady Boxing, Dancing for Parkinsons and Pedaling for Parkinson's (done on a stationery exercise bike). Exercise in whatever way you really enjoy, in this way you will most likely be more inclined to be faithful to the program.
When I was first diagnosed with PD, I was having problems with gait (veering to one side when I walked, especially later in the day when I was tired). I also had balance and voice issues.
As you are new to this forum, please share (as you are comfortable doing so), what symptoms led to your PD diagnosis. How are you feeling now?
Replies to "@louiem777 Hello Louie and welcome to the PD support group on Mayo Connect. I'm glad that..."
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Hello Teresa, thank you for your response I appreciate you. I first noticed a small tremor on my finger but thought nothing of it because I work using a computer on a daily basis and thought that was the cause. One day I went with my staff to eat lunch and I was trying to eat some soup and my hand started shaking uncontrollably. This is what prompted me to see the doctor. My father had Parkinson’s and I recognized that tremor. I noticed some changes in my voice but again thought nothing of it and thought it might be related to acid reflux. My doctor referred me to a neurologist who asked me a couple of questions, had me do some things with my hands and feet and had me walk and turn. She said she didn’t like what she saw and she sent me for an DAT SPECT scan. This is when she diagnosed me with Parkinson’s. Waiting several months to get the scan and then having to wait another month to see the doctor for the results was mentally draining. I wish we didn’t have to wait so long for this process.
I started researching on the internet and reading some books I purchased which have helped me tremendously with symptoms that I am experiencing. The symptoms I am feeling hit me like a ton a bricks all at the same time. I started with the tremor, the voice issue, and then I had problems with gait. I was walking to one side and I started moving slower. I started feeling pain in my legs which turned out to be rigidity of my leg muscles and I have started feeling it in my neck and shoulders. I have started having lingering headaches and problem with my eyes. At times I feel confused and I am having some memory issues. Sometimes I have a difficult time getting words out when talking with someone.
I have a strong feeling that I may have something more than Parkinson’s. From my reading I am leaning towards LBD or PSP but I am not a doctor. But I do know my body and what I am feeling. I am hoping they can give me some answers. I am scheduled for an MRI but again I have to wait a month for the appointment. I learned that there is no one test that will definitively tell me if it is any of those but I have to keep trying. I am physically, mentally, and emotionally exhausted! I have a wonderful wife who is very strong, but I know it is also affecting her. I never want to be a burden to her so I must keep moving forward. I have noticed a decline in my health but I am not giving up.
On a good note I have lost 35 lbs and I have regulated my A1C so my doctor took me off of the metformin. Kind of bitter sweet huh. I have other symptoms and I can go on and on. I will stop there for now. I am looking for help but I have learned that with these types of diseases there is still much to be discovered and limited neurologists that specialize in this field where I live.
Thanks again and I will leave it there for another day. 😊