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

My husband was recently diagnosed with Parkinsons. He's had tremors, balance issue, trouble with words, temper/frustration, and has been in denial for 3+ years. He worked in an anhydrous ammonia fertilizer plant for many years, where they stored, loaded and unloaded anhydrous. There were times he'd come home from work and when kissing him, and I could taste the chemicals on his lips. I would insist he go take another shower, even though he took one before leaving the plant. Could there be a connection between anhydrous and Parkinsons? Thank you for any information you can provide.

Hello @patriciajean,

I just noticed your post with @rwinney where you mentioned being diagnosed with Parkinson's. I too have PD and have been managing quite well with meds and lots of exercise.

I would like to invite you to share about your experience with Parkinson's in this discussion group on Connect.

Undoubtedly, meds, physical therapy and exercise have been part of your treatment for PD. If so, please share as you are comfortable doing so, what types of treatments have helped you the most?

Hi! Hope you are doing well and thank you for the message.

Though the resting tremor started before, the worst symptoms began in mid-2019: muscle spasms, ataxia, exercise intolerance, inner tremors, small fiber neuropathy, weakness, stiffness, incoordination, difficulty finding words. I felt like I was being mildly tasered all the time and that I was sitting on an electric transformer causing buzzing vibrations. I had a little relief with Pregabalin but had a very positive response to Sinemet. It was the first time in 18 months my muscles relaxed and I could sit still. My neurologist suspected atypical Parkinson's, specifically MSA or PSP so I got a 2nd opinion from a movement disorder specialist who agreed my symptoms pointed to "probable" MSA. I had developed fasciculations, bladder retention, occasional orthostatic hypotension. With meds I was able to continue exercise and my interior painting business.

Since I began having trouble finding words, counting money and occasionally found familiar places looking unfamiliar, I requested cognitive testing with a neuro-psychologist. Thankfully, I did well on that testing and now I have a baseline in case there's a change later on.

After Sinemet began wearing off and I became really uncomfortable again, my doctor gave me samples of the Neupro patch. The relief was indescribable. I couldn't afford the patch on my drug plan (Medicare) so I contacted the company and was eligible for low-income subsidy.

So, I was diagnosed with RLS, too. My tremors and fasciculations, neuropathy have progressed and I still have ataxia, bladder retention as well as urgency. I drop things a lot! I began to have palpitations but not enough to be alarming. I did have a negative DaTscan but my movement disorder specialist said that there is no single test for Parkinson's and the gold standard for diagnosis has always been clinical.

My only meds now are the Neupro patch and levothyroxine for hypothyroidism. My balance is OK and I believe many of my symptoms are really well controlled by the patch and by a lot of exercise. Exercise seems specifically to help with my mood, balance, weakness, insomnia, ataxia and appetite. We own an interior painting business and I've continued to average 10-20 hours per week painting. I cycle several times a week though it's usually indoor now for at least an hour or outdoors for minimum 1.5 hours and walk 2-3 miles three times a week and roller skate when I can. Also, yard work, house work, grandkids, etc! Reading Davis Phinney's book, "The Happiness of Pursuit" made me feel less alone and I recommend that to everyone.

That inability to relax the muscles is like torture and I feel that all sufferers should have access to either a Sinemet or Neupro patch to avoid the wearing off, especially in the wee hours of the morning when you feel like you're being tortured.

My neurologist mentioned the skin biopsy as another possible test but said at this point my symptoms are so well controlled with the dopamine agonist that further testing would not likely change the treatment. That may be something we consider in the future. Physical therapy is in my future but I haven't yet made an appointment.

In my efforts to get a diagnosis, I saw a couple (male) neurologists who were quite dismissive so I want to emphasis the importance of being your own advocate, especially women seeing male doctors. As an example of this, I had a "normal" mammogram in December of 2017. In January, 2018, I had a minor symptom - a blemish on my nipple similar to a pimple. Though a couple of doctors were reassured by this normal mammogram, I felt something was wrong and pushed for a sonogram, which was not conclusive. I kept pushing and by late February got an MRI that showed breast cancer. If anyone takes anything away from this I hope it's this: Trust your body. Trust your gut. Be your own advocate - even when the tests are "normal." A good doctor knows that tests are not definitive and will pay attention to your symptoms rather than dismiss them.

Take care,

Pat

@patriciajean

So glad to hear that you are being so proactive. Getting many opinions and not being dissuaded with the "dismissive" doctors is so very important. I encountered many dismissive neurologists in my journey to find an answer to the balance, coordination and gait problems. It took me nearly 20 years before I had a firm diagnosis. My PD is certainly atypical as well.

Like you, I will often drop things and sometimes they will fly out of my hand, which certainly makes for a lot of clean-ups. It really sounds as if you have found a good medication regime that is working for you.

I am not sure I understand the reason for the skin biopsy. Can you post again with more information about what that would show?

It's a fairly non-invasive way to test for alpha-synuclein deposits. It's rather new so I'm not sure all neurologists accept this testing but it's supposed to have good specificity as to typical and atypical Parkinson's as well as other synucleinopathies. We may consider the test if my symptoms progress and we need more information. There's no need at the moment. This site won't let me post a link but you can look up skin biopsies for alpha-synuclein and probably find the info. Glad you're doing well, too! One thing I forgot to mention is that I asked my neurologist about therapy because I wanted to be proactive with my mental health and he recommended someone that is amazing and knowledgeable so that is also something I highly recommend for people. He's helped me immensely. Being mindful is really important whether there's a disorder or not!

It's a fairly non-invasive way to test for alpha-synuclein deposits. It's rather new so I'm not sure all neurologists accept this testing but it's supposed to have good specificity as to typical and atypical Parkinson's as well as other synucleinopathies. We may consider the test if my symptoms progress and we need more information. There's no need at the moment. This site won't let me post a link but you can look up skin biopsies for alpha-synuclein and probably find the info. Glad you're doing well, too! One thing I forgot to mention is that I asked my neurologist about therapy because I wanted to be proactive with my mental health and he recommended someone that is amazing and knowledgeable so that is also something I highly recommend for people. He's helped me immensely. Being mindful is really important whether there's a disorder or not!

@patriciajean, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Alpha-Synuclein in Skin Nerve Fibers as a Biomarker for Alpha-Synucleinopathies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6444158/

Hi! Hope you are doing well and thank you for the message.

Though the resting tremor started before, the worst symptoms began in mid-2019: muscle spasms, ataxia, exercise intolerance, inner tremors, small fiber neuropathy, weakness, stiffness, incoordination, difficulty finding words. I felt like I was being mildly tasered all the time and that I was sitting on an electric transformer causing buzzing vibrations. I had a little relief with Pregabalin but had a very positive response to Sinemet. It was the first time in 18 months my muscles relaxed and I could sit still. My neurologist suspected atypical Parkinson's, specifically MSA or PSP so I got a 2nd opinion from a movement disorder specialist who agreed my symptoms pointed to "probable" MSA. I had developed fasciculations, bladder retention, occasional orthostatic hypotension. With meds I was able to continue exercise and my interior painting business.

Since I began having trouble finding words, counting money and occasionally found familiar places looking unfamiliar, I requested cognitive testing with a neuro-psychologist. Thankfully, I did well on that testing and now I have a baseline in case there's a change later on.

After Sinemet began wearing off and I became really uncomfortable again, my doctor gave me samples of the Neupro patch. The relief was indescribable. I couldn't afford the patch on my drug plan (Medicare) so I contacted the company and was eligible for low-income subsidy.

So, I was diagnosed with RLS, too. My tremors and fasciculations, neuropathy have progressed and I still have ataxia, bladder retention as well as urgency. I drop things a lot! I began to have palpitations but not enough to be alarming. I did have a negative DaTscan but my movement disorder specialist said that there is no single test for Parkinson's and the gold standard for diagnosis has always been clinical.

My only meds now are the Neupro patch and levothyroxine for hypothyroidism. My balance is OK and I believe many of my symptoms are really well controlled by the patch and by a lot of exercise. Exercise seems specifically to help with my mood, balance, weakness, insomnia, ataxia and appetite. We own an interior painting business and I've continued to average 10-20 hours per week painting. I cycle several times a week though it's usually indoor now for at least an hour or outdoors for minimum 1.5 hours and walk 2-3 miles three times a week and roller skate when I can. Also, yard work, house work, grandkids, etc! Reading Davis Phinney's book, "The Happiness of Pursuit" made me feel less alone and I recommend that to everyone.

That inability to relax the muscles is like torture and I feel that all sufferers should have access to either a Sinemet or Neupro patch to avoid the wearing off, especially in the wee hours of the morning when you feel like you're being tortured.

My neurologist mentioned the skin biopsy as another possible test but said at this point my symptoms are so well controlled with the dopamine agonist that further testing would not likely change the treatment. That may be something we consider in the future. Physical therapy is in my future but I haven't yet made an appointment.

In my efforts to get a diagnosis, I saw a couple (male) neurologists who were quite dismissive so I want to emphasis the importance of being your own advocate, especially women seeing male doctors. As an example of this, I had a "normal" mammogram in December of 2017. In January, 2018, I had a minor symptom - a blemish on my nipple similar to a pimple. Though a couple of doctors were reassured by this normal mammogram, I felt something was wrong and pushed for a sonogram, which was not conclusive. I kept pushing and by late February got an MRI that showed breast cancer. If anyone takes anything away from this I hope it's this: Trust your body. Trust your gut. Be your own advocate - even when the tests are "normal." A good doctor knows that tests are not definitive and will pay attention to your symptoms rather than dismiss them.

Take care,

Pat