Always Positive: I was diagnosed with... - Cure Parkinson's

Cure Parkinson's

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Always Positive

alwaysquality profile image
11 Replies

I was diagnosed with Parkinson's over five years ago and consider myself fortunate to have excellent support from family and the medical profession. I attend various events comprising individuals with various stages of Parkinson's and sad to see many with advanced symptoms whereas mine are less so.

The more that can be done to progress the understanding of Parkinson's and find a cure would be tremendous.

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alwaysquality
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11 Replies
Marcia123 profile image
Marcia123

You are right, what do you take?

alwaysquality profile image
alwaysquality in reply to Marcia123

I am on a cocktail of drugs like many with Parkinson's. These are:

Sinemet Plus 25mg/100mg - 4x a day

Sinemet CR 50mg/200mg - 1 at night

Pramipexole 2.1mg - 1 a day

Rasagiline 1mg - 1 a day.

Earlier this year in January and April I had total replacement of both knees which were very successful but exacerbated certain Parkinson's symptoms such as balance and stiffness.

ddmagee1 profile image
ddmagee1

You are so lucky to have great family and medical support! Not all patients, with PD, can say that! I live in a place where I’m treated like a number, by medical providers! I get like zero medical support! The neurologist sees me once or twice a year for about 15 minutes, and that’s it! If anything that I question about may be out of his field of neurology, he doesn’t address it! So, when I claim slow digestion, trouble with swallowing, constipation, or upset stomach, with, perhaps, a need for antacids, he says he doesn’t do that - even though PD is likely causing the slow digestive system! I have a lot of trouble walking, and have had a number of falls, yet I’m never referred to a physical/occupational therapist who could perhaps help me! I could go on and on! So, you are lucky!

Smittybear7 profile image
Smittybear7 in reply to ddmagee1

My neurologist and primary care physician both got me into physical therapy and occupational therapy. It was extremely helpful.

ddmagee1 profile image
ddmagee1 in reply to Smittybear7

I’m happy for you! Perhaps, some day I can get a different Doctor, who might be more inclined to help me!

PDFree profile image
PDFree in reply to ddmagee1

Could you ask them for these things?

ddmagee1 profile image
ddmagee1 in reply to PDFree

I will!

alwaysquality profile image
alwaysquality in reply to Smittybear7

To complement my initial post and Smittybear7s concerning medical support, my PD consultant referred me to a speech therapist ( my speech volume was much reduced with excess saliva ) and the outcome was very beneficial . Also referred to a sleep consultant (broken sleep with vivid/active/violent dreams ) but not a success. I was prescribed Clonazepam to be taken at night for the dream issue but the result was total knockout and my wife was very upset believing the worst. I stopped taking the tablets but sleep arrangements with my wife may be necessary as a result of my punching/kicking during the night

park_bear profile image
park_bear in reply to ddmagee1

High-dose thiamine helps to restore my normal G.I. tract peristalsis and thereby remedy constipation.

Mleis profile image
Mleis

show a chart that identifies pills, by visual description

HekateMoon profile image
HekateMoon

Im delighted you have that good support. Not everyone has such network. I live alone though my ex is next door and is helpful i have to advocate for myself. Neuro, gp and Parkinsons association here are very poorly equipped. I just come here and read and try everything thats in my hand and sound sensible. Meditation, supplements, walks, music and talk to people here that i love and respect...and do whatever is physically, emotionally spiritually and of course financially possible. I thank infinite intelligence that my mind is still clear and madopar still respond. Im making my life simpler every day and in the midst of this be very loving to myself. This is my team. Bless you all.🙏💫✨

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