Need help please to manage one more sympton

[michelbekhazi]

Thank you collogues, for your sharings, that have helped me physically, emotionally and mentally.

I am a 70-year-old male diagnosed with PD last Nov 22. After trial and error with some medicines, I settled, from early Jan 23, on Sifrol with 6 tablets per day (0.18mg). This produced the magic I was praying for and all my symptoms, except 1, subsided at approx 98%: only stability standing up & walking was at about 75% and now deteriorated to about 50%. For example, after standing in a queue for more than 2 minutes, I feel unstable with a feeling / fear of falling backwards.

My question please whether someone has experienced this (all ok except for 1 symptom) and what would your recommendation be in my case to manage this symptom. I find the discussion here, most often, more of value than the neurologist's recommendations. Much appreciated.

[johntPM]

Michel,

Sifrol is pramipexole, a dopamine agonist. It has a relatively long half-life (about 10 hours).

If Sifrol is not working, you may wish to discuss with your doctor taking Sinemet, which is levodopa/carbidopa. This is the "gold standard" treatment. It usually gives the best efficacy. But, unfortunately, it has a short half-life (about 90 minutes), forcing you to take multiple doses in a day.

Taking both Sinemet and Sifrol is also possible. But, and there is always a "but" with Parkinson's, this may increase the chances of having impulse control problems.

John

[michelbekhazi in reply to johntPM]

many thanks john, makes sense

[walkright in reply to johntPM]

HiI'm not sure I am in the right place here. I have a question. My husband has had parkinsons for about 12 years. He has been taking levadopa carbadopa. He has a new neurologist who introduced pramipexol slowly with the levadopa carbadopa of which he takes 1/2 of a 250/25 pill 3 X a day. Pramipexol is now at 1 1mg tab 3 X a day as well. Before seeing this neurologist, he was having alot of trouble sleeping through the night and alot of anxiety. He put him on fluoxetina 20 mg,which I understand is prozac, slowly building up to 1 a day, in the afternoon. This made an incredible difference in his life. Totally positive. He still has the tremor in his right hand and the Dr wants to illuminate this. He said the levadopa is no longer working so wants to wean him off it and increase the pramipexol slowly, which he has begun to do. I really wanted to introduce Vit B1 but am reluctant to do so with the other cocktail of drugs. It would be hard to know what is working. I tend to lean toward less is best but he is the expert and I don't want to go against his wishes. I wish he could remain on levadopa but thr Dr feels it is toxic and pramipexol is a better way to go. Having read yhe side effects I'm not sure which is the lesser of the 2 evils. We are so happy with the results of the Prozac but feeling a bit unsure of eliminating the levadopa carbadopa. Sorry this is a bit long winded. If anyone has an opinion I would greatly appreciate it.

[park_bear in reply to walkright]

Firstly, never apologize for a detailed post or comment, because that is what we need in order to make an intelligent reply. It is the short cryptic ones that are problematic.

I recommend you copy and paste this comment into a separate post to get proper attention.

With all that said, in my opinion your neurologist is terribly misguided. After 5 years, 50% of dopamine agonist users suffer impulse control disorders - compulsive sex, gambling, eating or shopping. Some seniors have lost their retirements and/or their marriages. Some have even ended up in legal trouble as a result of personality changes. That is not the only undesirable potential adverse effect of dopamine agonists.

Levodopa is not perfect either, but it's potential adverse effects are not as devastating.

If the levodopa has been working for him do not fix what is not broken.

[walkright in reply to park_bear]

Thanks for that. I am not really sure where to copy and paste my little speal??

[park_bear in reply to walkright]

On the right hand side of your page towards the top you should see a button labeled "Write". Click on that and it will let you paste your comment into a separate post.

[park_bear]

This issue is a work in progress for me. Parkinson's is like rock climbing - keeping one's balance under challenging circumstances. When retropulsion arises I'm working on counteracting that by elevating my awareness of what is going on in my body. Related reference:

sciencedirect.com/science/a...

I also challenge my balance ability daily by standing on one leg at a time to put on shorts and doing a bit of easy climbing on rock surfaces.

[michelbekhazi in reply to park_bear]

very interesting ideas, many tks also for sharing the attachment

[chartist in reply to michelbekhazi]

Some people on this forum have found improved stability with B1, if you haven't already tried it. A PD friend of mine who uses B1 also noticed this benefit.

Art

[michelbekhazi in reply to chartist]

thanks Art, good point, I l’ll read more about it and give it a try, much appreciated

[chartist in reply to michelbekhazi]

Here is some info on B1 and Daphne has a book and facebook group on it also.

healthunlocked.com/cure-par...

Art

[michelbekhazi in reply to chartist]

so many thanks,, genuinely appreciated

[Shakker]

Would you please elaborate upon the wrist weights and shoulder wrap?

[kaypeeoh]

Could a cane help when standing in lines?

[michelbekhazi in reply to kaypeeoh]

good point, something to consider, thanks

[Shakker]

thanks🙏🏼

[michelbekhazi]

very enlightening, many thanks for sharing

[JohnPepper]

Hi Michael. I have had Pd for over 30 years. I learned, long ago, that we need to strengthen our back and leg muscles and the best way to do that is to walk, as fast as you can, for up to one hour, every second day.

This is not only good for PD but also for your general health.

I have had PD since 1992 and nobody would ever know it!

[JohnPepper]

I have had Pd for well over 30 years and have found that walking as fast as I can, every second day ,for a maximum of one hou,r has overcome most of my symptoms. Try it, it is good for everytyhing.

[JohnPepper]

I no longer eed to take any PD medication. I have had PD since 1992 and have found that if I walk, as fast as I can, for one hour, every second day, I maintain a very healthy state and have no outwrds signs of PD. It is also good for my general health. I am now 88 and enghage in many outdoor activities.