Hello!

[tomatera]

Just found this site and it’s very interesting. I am 64 diagnosed 4 years ago. I go to a Parkinson’s gym for movement exercises and am on a fairly low dose of carbi/levo.

My non motor problems are causing me to retire this fall. I did a lot of driving and was in a technical field. The concentration to drive wears me out and then my presentations leave me forgetful and doing word searching.

The Dr tried other drugs, but they only presented other problems. I can carry on pretty well with family and friends and they don’t see the non motor symptoms I encounter so I feel like I’m exaggerating and complaining.

This leaves me feeling like I’m not trying hard enough to perform, but my mind has these limitations now. Trying to get used to it and accept it. I hope reading the posts help.

Thanks.

[grower]

I think the message that PD isn't just physical symptoms is slow on getting out. Hopefully your close family understand?

[1182 in reply to grower]

I find that most people do not know much about PD. So consider your complaint as a teaching tool

[ddmagee1]

It has been my experience that many people don’t really understand the true nature of what a Diagnosed Parkinson’s patient has to deal with. Once the Levodopa controls most of the tremor and outward symptoms seem ok, then to many people, I seem to be normal. I like that; howevever, there is very little understanding if I’m having a bad day “inside”, where peripheral neuropathy is bugging my hands and feet and I’m having trouble swallowing and talking. That is why I think calling Parkinson’s disease by that name sounds a bit benign. Actually, it really is a neuro-degenerative disease, originally called paralysis agitans, that affects diffuse areas of the substantia nigra area of the brain etc. and where the neuron degeneration occurs is what produces the physical deficit in a patient ( such as resting tremors, cogwheel rigidity, autonomic system problems, muscle stiffness etc.). This is why there is such variability in each patient’s symptom’s. It seems like the term “Parkinson’s Disease” consists of several disease processes.

[Lionore]

Hi Tomatera,

From my experience you should feel 100% better once you are retired. I have found that I have but so much energy for anything requiring both physical and mental energy. Great that you exercise regularly, make it your new job and schedule for when your energy is at maximum. For me that’s around 9-11 am. Take down time when you need it and don’t feel guilty.