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I was officially diagnosed about 1 year ago. However, I am experiencing what I call an express lane. My meds were increased to 3X daily and everything was like going so well. This weekend was a whirlwind of experiences for me. It's like the meds are are 1/2 effective for the tremor, which inflates the anxiety and frustrations.
I would really appreciate any feedback.

June 12, 2023
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A MyParkinsonsTeam Member

Atypical parkinsonism moves pretty fast, but everyone is different in how PD affects them. So I expect you’ll get a variety of answers. For me, MSA is not progressing as rapidly as others with the same diagnosis.

June 12, 2023
A MyParkinsonsTeam Member

The first year can be very difficult as they’re trying to find the right dosage of the right medication, the right amount of times usually as time goes on if you’re working with a MDS or a good neurologist, they can help you settle in to a regiment that works good for you. I’ve been diagnosed now for eight years. It is cut my trimmers at bay. Many people can’t tell that I have Parkinson’s disease, but when I walk my tremor act up I know I am very well aware of it. But most people aren’t paying attention to us anyways, and those that do notice will rarely say anything. Regardless of how outstanding we look, lol… Ha ha ha…
Yeah, I started out the same way like one pill a couple times a day and right now I’m taking Rytary which comes in stronger doses, but is still the carbidopa lovadopa in multiple release form. I take three pills five times a day. So unfortunately Parkinson’s is a disease where you’re going to take many pills and multiple times a day. The reason being is that the brain barrier which is built into the human brain as a protective mechanism. Also blocks good things from coming into your brain as well. Like our medication. So don’t be frustrated and if you’re not feeling good express to Dr. your feelings and be strong in your convictions because a lot of times, doctors are looking for us to tell them what we need!
And I’ve had more than one doctor that bases medication changes and medication increases on how adamant I am about needing it and that’s really not my personality. I’m really kind of laid-back. I wish you the best be strong your in a good place!!!

June 13, 2023
A MyParkinsonsTeam Member

Happy Monday Rod 👋
I've been experiencing off times 30 minutes before my next dose and I'm not a
happy camper about it. I asked my neurologist last month if he should increase my meds and he said not now. Hmmm 🤔
He's also a MDS and I trust him.
I would jot down some notes to take to your next appointment. Just go down the list and make sure you also jot down the answers.
Have a blessed day and...
Smile,
Donna 😁
👍💚🍀🙏🙌👋

June 12, 2023 (edited)
A MyParkinsonsTeam Member

Inquire, or google about having DBS (Deep brain stimulation) for PD. I had the surgery in October 2018, and can’t remember the last time I had tremors. Since I stopped taking any meds, No Dyskinesia at all. That side effect (which I hated more than the tremors) was gone.

June 12, 2023
A MyParkinsonsTeam Member

I see where someone else suggested the possibility of MSA (Multi System Atrophy or some other Parkinsonism I hope not but you need to check it out

July 12, 2023

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