PD

[PinkyUS]

Hello, new to this, husband has Parkinsons since 7 years ago when he was 47 years old.

He is taking :

Rasagiline 1 mg 1/day,

Carbi/levo 36.25/145 mg 4 caps/day

Carbi/levo 23.75/95 mg 9 caps/day,

Ursodiol 500 mg 2 tablets/day.

I make a note of his PD eveeyday as he loses his balance a lot lately.

From the time he wakes up till bed night time, ussualy his medication works only 6 to 7 hours a day while he's up about 14 hours.

Do you think his on right medication? Well, his Neurologist is very nice doctor. Sometimes i was just wondering id he needs to take any supplements??

Please advise.

Thank you!

[johntPM]

Not a complete reply, but read this on the use of ursodiol for PD.

scienceofparkinsons.com/201...

[PinkyUS in reply to johntPM]

Thank you

[PDConscience in reply to johntPM]

I participated in a recent 'bioenergetics' study designed to "determine the effects of ursodeoxycholic acid (UDCA) on brain chemistry" at U of Minn. Beyond the usual blood tests to determine the distribution and elimination, they used their super (7 Tesla) MRI to measure UDCA's effect on ATP levels (energy's building blocks) in the brain. Study results have yet to be revealed but l, unfortunately, experienced no tangible improvement in energy levels within the 6-week duration of the study.

[MBAnderson]

Yes, if you can afford them, supplements are not likely to do any harm and they may mitigate inflammation and oxidative stress. Some might even be neuroprotective.

[PinkyUS in reply to MBAnderson]

Thanks

[Bailey_Texas]

Hello PinkyUs

If your husband is only getting relief 50% of the time he should talk to his doctor about some type of change in his meds. A increase is most likely but or he could benefit from taking ropinirole. His doctor should give him guide line on how to increase his meds. The doctor is just using his best guess. There is for him to know what will do the best job it is up to you and your husband to find what is the best for him.

[PinkyUS in reply to Bailey_Texas]

Thanks Bailey!

[gilesyassin]

This is not uncommon given age of diagnosis and duration of the disease. I was diagnosed at 39 or 8 years ago and have tried everything out there. Unfortunately the therapeutic window for carbidopa/levadopa narrows as the disease progresses. I have both off periods and dyskinetic periods throughout the day.

When you say the medicine doesn't work do you mean he feeezes up or gets dyskinesia?

Freezing can be treated with medicine adjustments. Dyskinesia has been much harder to treat for me and is so in general.

[Bailey_Texas in reply to gilesyassin]

I am almost 13 years diagnosed and i am doing well. I started on carbidopa/levadopa about 4 years ago and i still get good results from it. some days it works great. I may get a little stiff around the 3 hours of my 4 hour cycle of meds. Some days i think i going to die. I cry i yell the pain is almost unbearable. i will have 3 or 4 hours those days that i am completely out of control At the present time i take 3 25/100 and 1 50/200 er carbidopa/levadopa every 4 hours 24/7.

[johntPM]

I've written an app in to which you input the times of the individual doses, the drug taken and the size of the dose and it draws a graph of your estimated levodopa equivalent plasma levels. You can use this to see what impact changing the time or the dose or the drug is likely to have.

parkinsonsmeasurement.org/t...

It doesn't take into account the effects of diet.

John

[danfitz in reply to johntPM]

Thanks. Very useful.

[danfitz in reply to johntPM]

You might think about making a thread for this so that everyone sees it. Thanks again.

[Hidden in reply to johntPM]

Can it be developed so that it takes in the blood brain barrier and models mid brain levodopa levels? Diet will have to be included as well. I might be able to find some info to help

[johntPM in reply to Hidden]

Yes. All that can be done, but it requires data. The app is written in JavaScript. It is open source.

John

[Motherfather]

hi pinky i think you should see a different specialist for your husband i took azilect for many years it done nothing for me..also called rasagline,and the rest dont look right to me,,you have nothing to lose by trying another specialist,regards.