Quote:
Originally Posted by CTjeff
I will give more history on my father to help clear up any confusion. However in his initial diagnosis I was only 13 years old and my father was fairly secretive of his condition in the beginning.
My dad was an avid bicyclist. He rhode daily. Which I believe helped enable him to stay off Parkinson's drugs for the first 5 years. He was also paranoid of prescription drugs in fear of dangerous side affects. Which is why he tried to avoid taking c/l for so long. It took him dozens of falls until he finally gave in and resorted to medication. I'm unsure of his initial doesages, however his current dose is stalevo 150 4 times daily and Azilect 1mg 3 times daily. He has tried other drugs, sinemet, rytary etc but none have any effect on him. He is scared of dbs and prefers a more natural treatment, hence the amino acid protocol.
Immobile might have been the wrong word choice. Usually when hes on his "on" time he can move around but cannot walk without assistance. His off time is an immobile state. I have to carry him to the bathroom, dress him etc. however it is 100% unpredictable and sometimes the dose has no effect at all, sometimes it works better and he can walk on his own.
It is true, these past 2 years he has had a rapid decline in his condition. He is depressed, but I think I am more depressed than him. he was extremely active, hiking, biking, running, swimming, to being wheelchair bound this past year has been tough on me to watch as his caregiver and his son.
I will update as my dad goes through the treatment. Thanks for everyone's insight and help.
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your dad is at half the maximum strength of stalevo. has he tried higher doses or added in plain C/L?
https://www.pharma.us.novartis.com/p...df/stalevo.pdf
are you sure about 3mg of azilect? i've never seen anyone taking more than 1mg except in a clinical trial and that was 2mg and it was no more effective than 1mg, 3mg might be dangerous, plus incredibly expensive. if this is true i'd talk to his neuro asap.
C/L should have an affect on him if stalevo works, it's C/L with 1 more ingredient which inactivates an enzyme which breaks down the levodopa in peripheral tissue and the brain and allows more l-dopa to reach the brain. stalevo just gives you more on time so you can take it less frequently.
your're his caregiver, i'd try to find a 2nd opinion and the best MDS you can find. if you try the HINZ protocol hope you have the next step planned if it turns out to be an expensive failure. i tried some wild procedures like chelation therapy, didn't help and the mantra was always, "give it more time" as i paid $125/week for infusions.