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I Have PD. No Info Or Guidance From Doctors At Local Hospital Where I Attend The Neurology Dept. I Do Not Know What To Expect As Time Goes

A MyParkinsonsTeam Member asked a question 💭
Johannesburg, ZA
January 27
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A MyParkinsonsTeam Member

Everybody symptom progression is at a different rate and everybody’s symptoms are different . I think the doctors sometimes make the rules as they go. Everything that goes wrong with you is not always Parkinson’s, but could be!! It’s frustrating, I know. My diagnosis came from; I didn’t blink enough nor did I swing my arms when I walked! What kind of hocus pokus diagnosis is that, I thought! My first neurologist was one who would walk in the room, ask me if I needed refills, ask me to walk across the room and say see you in 3 months! I guess I didn’t know any better so I just kept going back bur I read, and read and learned on my own. My biggest suggestion would be not to give in to the diagnosis, excercise all you can. Keep moving or you won’t be able to.

January 27
A MyParkinsonsTeam Member

You seem to be very level headed about this. I agree that the meds help.

February 15
A MyParkinsonsTeam Member

Dear Mark I also took the view to delay taking Carbilev and a friend who also has Parkinson’s advised me to start taking it.
All my bad symptoms improved and I am really glad that I took his advice.
The only symptom that I have not noticed real improvement in is my sense of smell.
My voice, shaking left hand and shuffling left foot all improved.

January 28
A MyParkinsonsTeam Member

It's understandable to feel uncertain about what to expect with Parkinson's disease (PD). Here are some insights from others living with PD:

- Individual Experience: PD manifests differently in everyone. What works for one person may not work for another
- Exercise: Regular exercise is crucial as it can help slow down the read more

It's understandable to feel uncertain about what to expect with Parkinson's disease (PD). Here are some insights from others living with PD:

- Individual Experience: PD manifests differently in everyone. What works for one person may not work for another.
- Exercise: Regular exercise is crucial as it can help slow down the progression of symptoms.
- Medication: It may take time for medications to show their effects, and their effectiveness can vary day-to-day.
- Support: You're not alone. Connecting with others who have PD can provide support and shared experiences.
- Research: Learn as much as you can about PD and keep a diary of symptoms and medication effects to discuss with your neurologist.

Remember, it's important to communicate regularly with your healthcare team and take things one step at a time.

 This AI-generated response comes from MyParkinsonsTeam and other selected sources. It is not a substitute for medical advice. Always ask your doctor about specific health concerns.

What MyParkinsonsTeam Members Would Tell Those Who Have Just Been Diagnosed | MyParkinsonsTeam
Beginner's Mind - Not Knowing It All When Living with Parkinson's | MyParkinsonsTeam
July 25
A MyParkinsonsTeam Member

From what I have read and experienced in 9 years of diagnosis. I believe that we all progress at different rates. Some slower then others. Not everybody has the same symptoms so the truth is although Neurologists are very intelligent people they have no idea on how you will progress. They are basically watching you and seeing how you will progress individually. I find telling them everything and writing stuff down in between appointments is helpful.
As far as medication I would say for me I take Rytary a form of Carbadopa/ Lovadopa and immediately my tremor eased tremendously. It’s been 9 years and people still can’t see by looking at me that I have Parkinson’s. I was diagnosed in 2015 with a DATScan that measured up to 80% loss of dopamine.
I would do research on progression rates which statistically are dramatically different between medicated People with Parkinson’s and the unmedicated.
I am not going to advise because I don’t have a doctrine in Neurology specializing in movement disorder.
Best of Luck

February 14 (edited)

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