Mike P

Every year I cut down a Christmas tree with my father. This year was our 43rd year of the tradition. For the first 34 years, we had three generations together: me, my father, and my grandfather. My son joined the tradition when he was 3 years old and we had four generations together for six straight years until my grandfather’s passing.…[Read more]

I can relate Jean and Christine. I have exceptional heat tolerance but zero cold tolerance and get chilled to the bones so easily. I shiver violently once I get chilled and it’s very hard to stop. The internal tremor gets turned up to 11. New England is probably not the smartest place for me to live given my cold intolerance. I make sure I am way…[Read more]

“Mild parkinsonisms” (reduced arm swing, bradykinesia, dystonia, and slight cogwheel rigidity- all limited to one side) first sent me to an MDS neurologist back in 2016 at age 43.

The initial B12 testing in 2016 was just part of comprehensive Parkinson’s screening to rule out other possible causes or contributing factors (brain MRI, cervical…[Read more]

I definitely experience apathy. I initially confused this with depression when I first noticed that I was not experiencing happiness from things that used to make me happy. After some introspection, I realized that I wasn’t experiencing any lows either. I didn’t know apathy could be a thing for humans. I find meditation helps when it’s done with…[Read more]

Last summer I read about the importance of maintaining good B12 levels, especially for Parkinson’s patients. I went back through my history and saw that my B12 levels were 258 back in 2016 (at age 43) when my MDS ordered bloodwork as part of the diagnosis process. While on the low end of normal, I guess it was still considered normal, or at l…[Read more]

Hi Jean. I just enrolled in this study and am awaiting my kit. My MDS previously tested me for GBA (negative). I’ll report back if any come back positive.

Does anyone else take carbidopa-levodopa only twice daily as my neurologist prescribed? It seems as if the more typical regimen is three times daily.  I have been taking one 25/100 tab at 8 AM and one 25/100 tab at 4 PM per her instructions and fasting at least 2 hours prior and 1 hour after the doses. She said if I don’t need it at night there’s…[Read more]

I do drink nondairy milks as I try to move away from dairy given the research. But, they all have protein. :-/

I make sure I do not eat anything at least one hour after taking the dose. I do drink coffee with a little bit of non-dairy creamer which I don’t believe has very much protein if any at all. I am working on converting to black coffee. Thanks for the tips in case I get nausea. So far so good.

I can relate. Every morning I wake up completely exhausted. Many mornings I feel hungover despite not having a drop to drink. At night I can fall asleep very quickly and I sleep soundly but I find I need more and more sleep now to function. Years ago I never needed more than 5-6 hours of sleep. Now I need a minimum of 7-8 hours of sleep.…[Read more]

This article let me to discussions with my MDS about B12 levels, some tests, more tests, and a diagnosis of pernicious anemia (early stages).

After four weeks of weekly B12 injections, my B12 levels increased from 175 – 550. My doctor now wants me to continue with monthly injections. It has been two weeks since my last injection. I definitely…[Read more]

Hi Jean-

My MDS actually prefers email (secure portal messaging) as the primary communication method. Unfortunately, it is very hit or miss for me in terms of both timeliness and quality of response versus when I see her in person. I have to be very brief otherwise my doctor often asks me questions for information I already provided in the m…[Read more]

I just began taking the generic version of Sinemet manufactured by Actavis. My MDS provided me with the following titration instructions:

Carbidopa/levodopa 25/100

• Week one: Half a tablet by mouth one hour prior to breakfast
• Week two: Half a tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper

…

[Read more]

On the very first night of the 2mg Neupro patch, I had the same visual disturbances I had with low doses of both Mirapex (pramipexole) and Requip (ropinirole).

After being in a deep sleep I see flashing lights upon waking (2am, 3am, 4:30am) that slowly dissipate. They were more intense than they were with the previous dopamine agonists. Argh!…[Read more]

Jean-

My symptoms are limited to my dominant right side. It’s interesting how every person’s symptoms and response to meds is completely unique.

I’ve been on 1mg daily of rasagiline (Azilect) for about two years. I don’t notice any improvements with Azilect. There was a study that theorized this drug may be neuroprotective. It wasn’t proven to be neuroprotective at a higher dose so these claims are not fully supported. But, it could be neuroprotective, it’s easy for me to take once daily…[Read more]

My MDS neurologist ordered one genetic test for Gaucher’s disease (GBA) that came back negative. Apparently there are some new targeted PD treatments for people that have Gaucher’s disease. I’ve been told there are other treatments in development for the other genetic PD associated genes such as PARK7, SNCA, LRRK2, parkin and PINK1. I’m definitely…[Read more]

I began to have frustrating symptoms at least 6 years prior to diagnosis when I was 37 years old. When pitching to my son I noticed that I could throw a few buckets and then I would get the yips and would lose all accuracy. I chalked it up to some type of shoulder injury as my shoulder was often stiff.

Other ongoing right arm issues included…[Read more]

I’m the opposite. I can go for a run when it’s 90°F with 85% humidity. I can’t tolerate the cold. If I start to get cold with combined stress I get the shivers easily. It’s hard to not appear to be a human sewing machine when attending my kids’ soccer and baseball games late fall or early spring in New England. Multiple base layers of merino wool help.

To the best of my knowledge, no blood relatives in my extended family have had PD. My parents can’t think of anyone they encountered in the family that ever exhibited any symptoms and went undiagnosed either.

I guess I’m the big winner of some long odds for YOPD. 😀 I keep hoping I can reproduce those long odds for the lottery but no such luck yet!