After 3 year of doctor visits back and forth ,they have finally concluded to Vascular Parkinsonism due to white matter lesions(hyperintensities)/leukoaraiosis probably linked to several years of uncontrolled High blood pressure.
The most obvious symptom is the gait:feet dragging and freezing when starting the walking.
Can no longer walk without a cane and even with a cane can not walk more than 2 or 3 minutes without getting really tired.
Neurologist says that anti-parkinsonian drugs are not indicated as a treatment on the Vascular Parkinsonism and only excercise may help.
If someone experienced the same,could you please share your experience and let me know if anything drugs or supplements has helped you.
Thank you very much for your help
I was briefly diagnosed with vascular Parkinson's. But, nevertheless, I was kept on a low dose of ropinirole and rasagiline. When I produced graphs showing that my symptoms were correlated to the length of time after I took a dose, my diagnosis was changed to idiopathic Parkinson's. Now 16 years after diagnosis my levodopa equivalent daily dose is 760 mg. My walking is very good (10 mile days are common).
Hi JohntPM Thank you for sharing your experience,that s encouraging
You are amazing and inspirational, John.
Just confirming : you’ve had PD for 16 years and are presently able to walk 10+ miles regularly? Wow!
Yes, the latest long distance walk was 10 days ago was Kinda Scout in the English Peak District in heavy rain and gale force wind.
There are constraints. I am finding it harder and harder to cross poorly maintained stiles. I can see that one day soon I will be trapped between, for me, uncossable stiles. Also, I have Pisa Syndrome (leaning over to the side) which sometimes kicks in at about 4 miles, but fortunately, stayed away on the Kinda walk.
what exactly is your current drug regimen, if I may ask?
5 x 75 mg Stalevo
8 mg ropinirole
1 mg rasagiline
1 sachet Movicol
I take the ropinirole, the rasagiline and one of the Stalevo when I get up, leaving the remaining 4 Stalevo doses to be taken on an as needed basis ( "dynamic dosing"). Most days I only take 4 of the Stalevo in total. Very rarely I take a total of 6. If I remember correctly, the Kinder day was a 6.
Thank you for sharing this. It is very motivating and uplifting to learn that you can walk so much after 15 years of PD.
Info like this gives the newly diagnosed like me, hope and motivation.
Just had a phone call from Jim and Geraldine back from Ireland for the first time in 18 months (due to covid). The gas had been cut off and they don't speak French so I popped down to help. Jim is now comfortably 10 years post diagnosis, reformed alcoholic, not at all PC, and pure conventional therapy. His festination was more apparent and will piss him off, but bright as a button, full of Irish wit and repartee, still playing golf (and challenging me to a round) and will for sure whip my ass at pool later this week. I like Jim 🙂
Lovely to hear. Thank you. 😊. The Irish are wonderful through and through. (I’m very biased on this. I’m a strawberry ginger generally presumed to be Irish)
I love ginger! My wife is a strawberry blonde too. Jim was one of the first to make me realise that whilst PD is no fun, you can still enjoy life and its important to seize the moment.Have you started exanatide? How are you getting on with it?
I’m picking it up today. I gave up on insurance. $500 a month
Hello Hidden. Congratulations on obtaining Exanatide. Please keep us posted on whether you notice any progress after taking it for a while. Thanks! If you don't mind me asking, how were you able to get a prescription for it? I am not diabetic, so I would not normally qualify. It looks very promising as we await 2024 for the final trial results:
By the way, I live in the United States.
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