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

Thank you for your post. I am a Vietnam Vet and have been diagnosed with Parkinsons based on Agent Orange (Dioxin) exposure. My symptons are also not "standard". I have speach issues that are getting worse. Can't find the word, no sentence structure, stuttering. I have virtually no memory. I can remember a zillion things from 40 or 50 years ago but literally can't transfer a complete phone number - I have to do it one digit at a time. I do not have the shuffeling gait walking and do not have the hand/finger rolling, but my feet tap dance like mad (as I write this) if I am sitting and my body jerks all the time, I have watched some video of MJF and see him jerking also. I do volunteer work and if I start to feel too much stress I become totally non functional and want to go home and hide under the covers - literally.
I have the bladder issues and if I go on a trip of any length I wear a diaper (pull-ups). Great on the male ego.
I walk a lot and I find exercise is the best for me, and I strive for a 2 to 3 mile walk every day although I often get much less. I do take Carbidopa/levodopa which I believe helps quite a bit. I tried gabapentin and for me it was horrible - bless the people it works for.
I have significant balance issues but for some reason I can walk, not perticularly straight line but with many "midcourse corrections". Where I live the sidewalks are broken and people park on them so you have to walk on the street but there are a couple of paths that are good, but one has to deal with other issues.
Bless you, it sounds like you are coping fairly well and its good to know that there are others striving to "deal with the cards they were delt" with a positive attitude.

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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

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I’m a 76 year old woman who has had PD for about two years now. The most problematic issues I’ve experienced are fatigue and brain fog. I also have some tremors. I’ve tried Sinemet for months, but it seemed to cause more problems (e.g., dyskinesia) than it helped with. I’ve been taking LDN for two months now, so still assessing that. I’ve worked closely with my primary care physician and a neurologist.
I recently started taking Rasagiline.

My questions are:
1 - Has anyone found anything that has worked to reduce fatigue or brain fog?
2 - Has anyone tried LDN, and if so, what results have you experienced?
3 - Does anyone have positive experiences with any alternatives to Sinemet such as Rasagiline?
4 - Has anyone tried HIFU/MRgFUS for PD Tremors?
5 - Has anyone tried the experimental glove treatment for tremors?

Thank you!

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Good Evening
I am in The Philippines so my associations and trials are limited. I am 78 and was diagnosed 2 years ago. I had never heard of the glove but am very interested in tracking that down. I tried grabapentin and felt it made everything worse so stopped it. I am on low dose carbidopa-levodopa and it seems to help. I have whole body tremors and studdering and choked pretty badly a number of times so am learning how to be safer there.
I have the best luck slowing things down by walking and mild exercise. I am also practising working on my attitude. I think we can get bogged down fairly easily because this is not any fun but that only makes it worse. The brain fog is the worst thing so I read a lot, play card games on the computer and write at least an hour a day. I think Mayo clinic connect is great since we may have differences in our symptoms but at least we understand what everyone is going through. Welcome to the club 🙂
MJF is my hero/example and I figure I can do this for 20 years if he can do it for 40.

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I’m a 76 year old woman who has had PD for about two years now. The most problematic issues I’ve experienced are fatigue and brain fog. I also have some tremors. I’ve tried Sinemet for months, but it seemed to cause more problems (e.g., dyskinesia) than it helped with. I’ve been taking LDN for two months now, so still assessing that. I’ve worked closely with my primary care physician and a neurologist.
I recently started taking Rasagiline.

My questions are:
1 - Has anyone found anything that has worked to reduce fatigue or brain fog?
2 - Has anyone tried LDN, and if so, what results have you experienced?
3 - Does anyone have positive experiences with any alternatives to Sinemet such as Rasagiline?
4 - Has anyone tried HIFU/MRgFUS for PD Tremors?
5 - Has anyone tried the experimental glove treatment for tremors?

Thank you!

Jump to this post

Good Evening
I am in The Philippines so my associations and trials are limited. I am 78 and was diagnosed 2 years ago. I had never heard of the glove but am very interested in tracking that down. I tried grabapentin and felt it made everything worse so stopped it. I am on low dose carbidopa-levodopa and it seems to help. I have whole body tremors and studdering and choked pretty badly a number of times so am learning how to be safer there.
I have the best luck slowing things down by walking and mild exercise. I am also practising working on my attitude. I think we can get bogged down fairly easily because this is not any fun but that only makes it worse. The brain fog is the worst thing so I read a lot, play card games on the computer and write at least an hour a day. I think Mayo clinic connect is great since we may have differences in our symptoms but at least we understand what everyone is going through. Welcome to the club 🙂
MJF is my hero/example and I figure I can do this for 20 years if he can do it for 40.

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@edroz01 Hi, hope you're well today.

My fatigue was mainly due to RLS and Sinemet worked but during the wearing-off period I couldn't rest. My sleep was interrupted from about 2-4 AM every morning when I'd have to take another dose and wait for it to take effect. I found relief with the Neupro patch, which is a dopamine agonist and may be less likely to cause dyskinesia. Since I get a continuous dose of medicine, my sleep is not interrupted and I feel a lot less fatigue and brain fog.

In regard to tremors, I'm not aware of anything that eliminates them. Both Sinemet and Neupro decreased my tremors significantly but neither got rid of them entirely.

Hope you can find something that helps with your most troublesome symptoms.

Take care!

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