Parkinsons disease IS one of the
ALL of the diagnoses ARE PARKINSONISMS, but 80% of Parkinsonism diagnoses are of
Parkinsons Disease itself generally does NOT decrease your life span.
Several of the other Parkinsonisms DO reduce your life span, some significantly.
If you have a diagnosis of a Parkinsonism OTHER THAN Parkinsons then do your research on the
1. presenting symptoms
2. anticipated course of the disease, including the usual timeline of its progression
3. recommended treatments, including but not limited to
*medications 💊 including supplements
*physical, speech, occupational therapies
4. assessment of and planning for your future care needs
5. preparation of your financial affairs
6. IMMEDIATE PREPARATION OF YOUR WILL, AND ANY TRUST CONSIDERATIONS
(I was a licensed financial advisor in NYS)
PROTECT YOUR ASSETS FROM MEDICAID FOR YOUR FAMILY
7. Preparation of health care proxy
8. Determine whether and when you may need to stop working and apply for Social Security Disability
That is a journey I have been on and it took 18 months to be approved and was arduous and financially draining.
Your team here at MyParkinsonsTeam is a vital resource.
Be sure to keep asking questions.
You are NEVER alone.
I just recently learned there is a test which is being used in large neurology centers which is being used successfully to diagnose MSA and I believe PSP. They have found the proteins which misfold in those diseases are in places other that the brain. They have found a small sample of skin can be used to diagnose those diseases. I believe they are still researching it but it is close to being released for wider use. It sure would be nice.
Well done everyone that contributed. I am saving this email in a folder in my emails called Parkinsons Information. You just pull this up ad hit the folder and all the folder are shown. Create a new folder for Parkinsons Info, Parkinsons Events, and other Parkinson Nedds all in separate folders. It has been invaluable. Down the road I won’t remember all of what I learn. So save it. You can create a folder under ICloud or GMail or whichever one you use. It is worth the effort. Thank you for all the wisdom that has been shared.,
Well, they don’t call it “practicing medicine” for nothing. A doctor can’t possibly know everything, which is why we must look for the right fit, and it IS exhausting.
Parkinsonism is an umbrella term which covers several related diseases in which dopamine is lost. The only one which is not eventually fatal is idiopathic Parkinson’s Disease; it is also the most common of the parkinsonisms. Lewy Body Dementia is the next most common. All the rest are considered rare and very rare. I have Multiple System Atrophy (MSA) and it affects around 4-6 people out of 100,000. And there are several other ones. There is one called drug induced parkinsonism which is not fatal and which sometimes goes away, sometimes not, depending upon the drug which causes it. It resembles PD but is not idiopathic since the cause is known. There is also a cause from small strokes which can resemble PD but is not. Many/most of these are diagnosed as PD at first but then a person develops symptoms which do not go with PD at which point the diagnosis is changed, although there are times when it is missed. One way to tell the difference is how effective levodopa is, but the are certain symptoms which will develop which gives the doctor an idea what is going on. Those symptoms differ depending on the final diagnosis. And sometimes the final diagnosis is only determined by autopsy.