Nettiepie

[tobykeith]

I suffered with extreme leg pain in my left leg for several weeks. At the time I was taking 3 Simenet daily. I have now reduced it to 1/4 pill four times a day and eat a banana each day. I also take Azilect. I am doing Big and Loud therapy and at present do not have any leg pain.

[JohnPepper]

Hi Tobykeith. I am pleased that somebody has had the strength to reduce their medication. Do you feel that the medication was causing the pain?

John

[tobykeith in reply to JohnPepper]

My former Neurologist prescribed 3 Sinemet a day. That made me very sick. When I call her she told me to stop taking it. I had symptoms and felt I needed some. I was trying to build back up to the prescribed dosage when I started with the SEVERE leg cramps. I talked with a friend who told me her doctor told her to divide the pills to see what worked for her. I also read someone post that a banana a day helped. I have been doing this for several weeks with no pain. I have changed neurologist and he told me just to continue what I am doing. He feels the Big therapy is helping more than the medicine.

[JohnPepper in reply to tobykeith]

Hi Tobykeith. I have been telling everybody for quite a long time that none of the levodopa or non-MAO-b inhibitors does anything to slow down or stop the progression of Pd. They are all designed to mask one or two of the symptoms, and that is not even guaranteed. The MAO-b inhibitors stop the natural breakdown of dopamine, which allows you to use more of the dopamine you already have. That is what I took for 8 years. I now take no Pd medication and only take 1 blood pressure pill. I have been free of most of the movement symptoms since 2002 and now live a 'normal' life.

John

[nuggets in reply to JohnPepper]

Hi John,

I should split and reduce medication, I take 3 sinmets a day, I have problem with my left leg, I have hard time to walk. and eat banana. Right now I start to have protein twice a day. I'll post if it works

Nuggets

[JohnPepper in reply to nuggets]

Hi Nuggets. When you say you have problems with one leg, do you mean that it drags, when you try to walk?

If that is what you mean, it is because your brain is unable to communicate properly with that leg.

Let me tell you how you can overcome that!

Stand upright and hold onto somebody's arm while you do a test for me:

I want to know how strong your muscles are.

Are you able to lift that leg up straight in front of you? If so, how high does it get?

Then, stand up on your toes with your feet about shoulder distance apart. Can you do that?

While the person is with you, can he/she hold you so that you can move your arms? If so then can you see how far you are able to swing both arms?

Let me know what happens.

Kind regards

John

[nuggets in reply to JohnPepper]

Hi John,

Thank you so much for your time and assistance.

I had symptoms 4 yrs before to see the neurologist, I was misdiagnosed by the GP he always said I have arthritis, just take Tylenol and fortunately I didn't take Tylenol. My left arm didn't swing since this time. then three years after I start to have tremors on my left middle finger and now it goes to my thumb, I'm on Sinnemet since Nov.2013 but there is no improvement most of symptoms came out . I have no pain now but I have very hard time to walk sometime.

I can't control my left leg. I have to use walking stick.

It's a big challenge to get dressed or to put socks on. My left hand lost a lot of strength.

My muscles are weak compared to years ago.

I can lift my leg straight in front of me but it;s around 20cm from the ground but not very straight.

Yes I can stand on my toes.

I read you book and as I have problem with my leg I can't walk fast.

I take protein to give a bit fore to my muscles. two scoops a day= 32g of protein.

Thank you so much John

Very best regards,

Nuggets

[JohnPepper in reply to nuggets]

Hi Nuggets. You have told me that you can lift your left leg up and you can stand on your toes, but you think you can't walk properly!

In my book I said that you have to start controlling your walking by using your conscious brain! Instead of willing yourself to walk you now have to consciously lift your left knee up and stick the leg out in front of you and consciously land HARD on the heel of that foot, while you are pushing forwards with the toes of the right foot. And then do the same with the right leg.

You can no longer walk without concentrating on what you are doing. Your brain can no longer do this. Get used to having to think about each movement, as you do it.

Let me know how you go.

Good luck

John

[nuggets in reply to JohnPepper]

HI John,

Thank you so much but when I walk I feel like my knees are loose I feel I have no balance.

Very best regards

Nuggets

[JohnPepper in reply to nuggets]

Hi nuggets. Your muscles are probably very weak. I would suggest that you consult a physiotherapist to get some exercises you ca do, in safety, to strengthen your leg muscles, which will overcome your balance and wobbly knee problems.

Good luck

John

[nuggets in reply to JohnPepper]

Hi John,

I know that my muscles are weak, this week I start a 8week physio for Pd in a hospital.

Thanks a lot John, I'll get you posted.

kind regards,

nuggets

[JohnPepper in reply to nuggets]

Hi nuggets. Good Luck!

John

[Nettiepie]

Toby. Wow. I can try what you suggest. Pretty great that you are pain free.