Mike P

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!

I use an app named “Due” for iPhone/iPad. I like it because it’s relentless with reminder notifications that are hard to miss/ignore. I am not affiliated with the creators of the app in any way. I’ve used it for years and find it incredibly useful for any really important reminders.

I am starting Neupro (rotigotine) tomorrow with a 2mg patch for the next two weeks. I’ll report back my experiences.

I had visual disturbance side effects with low doses of both Mirapex (pramipexole) and Requip (ropinirole) where I’d see flashing lights upon waking.

I had to taper off ropinirole after 3 mg total daily.

I had to taper off…[Read more]

I’m 46, diagnosed 3 years ago, symptoms for 7+ years. My symptoms are limited to my dominant right side. I have used dictation software on and off for about 7 years. I use it more towards the end of the day when my hands are fatigued which exacerbates the bradykinesia and rigidity.

I used Dragon Dictate for Mac for many years. The Windows version…[Read more]