Jumpy legs

[Pats68]

Does anyone else have weakness and a funny feeling like a jumping sensation in your thighs?

[Grasss1973]

I am 70 and I’ve had PD for ten years and have been on rasagiline all this time. C/L dopa

(Sinemet) was added two years ago because of progressive slowness and stiffness in my legs and arms. These symptoms are now much improved but I have restless legs when the blood level of Sinemet is dropping that is, close to when the next dose is due.

I think your symptoms are actually restless legs. Apparently, some people get this as a precursor to PD which might manifest itself some years later. I sometimes get that squishy, jelly like feeling in my legs also when the next dose of Sinemet is due and I’ve been known to take the Sinemet a little early in that case. I’ve found that all food at the time of taking Sinemet interferes with the drug’s absorption or metabolism so I try to wait 30 or 40 minutes before I eat anything.

Don’t know if any of this is new info for you but I think you’ll find that people on the forum have a better grasp of the day to day issues both big and small that come up while living with this disease than in some cases their docs. I would encourage you to ask questions here and absolutely press your healthcare providers when you want more info.

God luck !

[JohnPepper]

Hi Pats68. Have you spoken to your neurologist? It sounds like you have dyskinesia, which is caused by too much levodopa in the brain. If that is the case I think you have the choice of either putting up with it or reducing your levodopa medication. That can be problematic.

[Pats68 in reply to JohnPepper]

Yes, I did tell them. No response. I am reducing dosage myself and going to look into mucuna pueriens.

[JohnPepper in reply to Pats68]

Hi Pats. Have you had any success with your medication?

[Pats68 in reply to JohnPepper]

I did cut back on Sinemet for s while and it has gotten better. Sometimes I have to increase the Mirepex.

[JohnPepper in reply to Pats68]

Hi Pats. Do you think the sinemet helps you with any of your symptoms? What does the Mirepex help you with?

[Pats68 in reply to JohnPepper]

Sinemet helps with coordination issues and speech. Mirepex helps restless leg syndrome, can't do without it.

[JohnPepper in reply to Pats68]

Hi Pats. I'm not pressurizing you but am keen to know if you have given fast walking a try? If you have, did you find any improvement in your Pd?

[Pats68 in reply to JohnPepper]

No I have not. I suffer from such severe fatigue that it is really difficult to get motivated. I have a passive assist bicycle that I should use more often.

[JAS9 in reply to Pats68]

A year ago, I also had severe fatigue. I don't know what shook me out of it but I just didn't want to give up, so I shook things up. I changed my diet (became vegan, but probably any change of diet could work). A few days later, I went outside and tried to walk, gave up, went back inside. A few hours later I tried again. And again. Finally, I was able to get myself to walk 20 feet. That little victory felt so good I still remember it. Next day I went a little farther. Not every day is going to be better than the day before, but the day after that will be, as long as you keep going.

It's not going to be easy, but you can do this. Good luck, Pat.

[Pats68 in reply to JohnPepper]

Tonight I want to sit in the chair and missed the target fell flat on the floor. I have really got to start the fast walking soon

[Pats68 in reply to JohnPepper]

D didn't I read your book but it took you a year of fast walking do you see any results

[JohnPepper in reply to Pats68]

I started fast walking in 1994 and within 4 months I had improved my time from over 10.5 minutes per K to less than 9 minutes per K. It continued to improve over the next few years until I was down to less than 6.75 minutes per K. That was around 1998. Since then it has slowly gone up to around 8.5 minutes per K, twenty years later. It changed my life.

[Pats68 in reply to JohnPepper]

How long did it take to see improvement with Parkinson's symptoms?

[JohnPepper in reply to Pats68]

As I said in the previous post, after only four months I saw a huge improvement in my performance. All the time I do the walking I am getting better or maintaining my level, whereas, if I were on medication I would be getting worse all the time, even though I might feel a bit better for a short while.

[Pats68 in reply to JohnPepper]

Four months I could take, I was thinking it was a year.

[JohnPepper in reply to Pats68]

It is all the time, as long as I keep on walking. Isn't that better than getting worse, all the time?

[Pats68 in reply to JohnPepper]

Do you think sinemet can cause severe fatigue?

[JAS9 in reply to Pats68]

Sinemet made me feel terribly slow and drugged and apathetic. For me, switching to Rytary3 years ago was a game-changer and is a big part of why I'm doing as well as I am.

Also, in my experience, fatigue can be caused by too much fat and oil in my diet. It gets into my blood and slows the flow down. But maybe that's just me. If I eat cleaner - real, unprocessed food with lots of fiber (fruit, berries, legumes, and nuts are my friends), I feel more energized.