Parkinsonism

@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?

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. 😊

Hello @louiem777,

I can see that this journey to a diagnosis has been a long one. When my symptoms first started, I saw two to three doctors trying to find an answer. I was given possible diagnoses of early MS, early PD, and "I don't know." The last one was the hardest to accept. It took about 10 years before PD could finally be diagnosed and this mainly came about after I was prescribed Sinemet. The neurologist told me if the med helped my symptoms, then that was most likely my diagnosis.

Prior to the DAT SPECT scan, what other tests were done? I'm thinking of EMG (nerve conduction test), perhaps a lumbar puncture? As you said that there are, "limited neurologists that specialize in this field where I live." I'm guessing that you live in a rural area. If you need to see a specialist for a second opinion, I recommend seeking out an opinion at a PD Center of Excellence. There are several throughout the country. If traveling is involved, you might find it worthwhile even given travel time and the expense.

I suppose that by now, you have been given some PD meds. Have you noticed much of a difference yet? What type of exercise or physical therapy has been tried?

Hi @hopeful33250

The start of my journey has been eye opening and disheartening. The DAT SPECT scan is the only test that was done. When I was given my diagnosis I took my wife with me. The doctor asked me about what I was feeling and I told her my symptoms. The neurologist said I have the results of your scan and just said, “you have Parkinson’s.” That was it. It was straight forward and she saw that me and my wife were just trying to take it in. She said, “it’s not a death sentence!” My wife asked her what are the symptoms we would see and she told my wife, “we just talked about that!” Meaning the symptoms I told her I was feeling. The experience I went through with the neurologist was not what I was expecting. I was hoping for a little more help and direction. It left me hopeless and I felt lost. I think that made me determined to learn it on my own, but it would be nice to have a doctor on my side that would be willing to help. I let her know I was having pain in my legs and she said there is no pain in Parkinson’s. I also told her I was having headaches and she said they were migraines. She said I needed to go see my primary care physician for those to see what was happening. She prescribed carbidopa/levodopa for my symptoms. No physical therapy as of yet.

At this point I looked for a primary care physician and he is going to run some tests. I have the MRI scheduled and some blood tests to take as well. I really don’t want to go back to see the neurologist but right now I have to until I get the MRI and blood work back. My primary care physician said I need to get a second opinion after telling him my experience. It pains me to know that other people may be experiencing the same.

I live in El Paso Tx and I will definitely be looking into the PD Center of Excellence. Thank you so much for talking with me!

Hello @louiem777

Mayo Clinic has a campus in Phoenix, Arizona where they treat Parkinson's. Here is a link to information about their treatment of PD
https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/care-at-mayo-clinic/mac-20376068
If you are interested in a Mayo appointment here is the link for appointment information http://mayocl.in/1mtmR63

There is another Center of Excellence in Phoenix Arizona, the Barrow Neurological Institute, The Mohammad Ali Parkinson's Center. Here is a link to their website,
https://www.barrowneuro.org/centers-programs/parkinson-disease-and-movement-disorders/.
Finally, here is a link to the Davis Phinney Foundation website. At the top of the screen, you will find a toll-free phone number as well as an email address. https://davisphinneyfoundation.org/. They may be able to find a PD Center of Excellence closer to you in Texas.

Please continue to post as you have questions.

Hello @hopeful33250

Thank you for your help I very much appreciate it. Keep doing what you are doing there are a lot of people that need you.

Thank you! 🙏

You're very welcome, @louiem777. Yes, I certainly will keep doing what needs to be done to help people as they come to this forum. I look forward to hearing how your second opinion goes and if you get a new diagnosis and/or treatment. It is important for every patient to be their own advocate, especially when they have any uncertainty about their current treatment plan.

Will you keep in touch?

Thank you. I will definitely keep in touch.

I was recently diagnosed with Parkinsonism, and started taking Sinemet 3 weeks ago, but I am not seeing much in improvement. I will be seeing my local neurologist in a few days again to see what he thinks. He is excellent, and I have been seeing him for several years, ever since I had Chiari Malformation and Syringomyelia. I am now wondering if those conditions are a reason why I have developed Parkinsonism, since it is an umbella condition with other conditions, including PD, under it.

I wrote this as a reply to mvanstem (@mvanstem)