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Weakness

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Trev12345
Weakness

Hi all I have been diagnosed with young onset parkinson's disease since March 2016 when I was 35 I am now 37. 

I am currently on 100mg Stalevo x 4 daily which helps when I go into my "on" state. 

It originally affected my right hand as in limited motion which had a knock on effect to my arm it has affected my right foot. 

I then last 2 weeks I've noticed a weakness feeling in my left arm when my meds are "off" like I can't move my left arm in a fast motion etc... The meds help with it. 

Has anyone with parkinson's had issues like this within 2 years of diagnosis?

Thanks 

 

Trev12345

Anyone?

DivineR

Hi Trev, 

Was diagnosed 14 months ago and have right side weakness like you. I'm on Ropinerol 8mg at moment. I don't have any left side weakness......yet. 

Maybe a change in meds are needed or a chat with your consultant about the different symptoms. Guess we all progress differently. 

daffy

Hi Trev,

I agree with Divine R. It's definitely worth asking for another consultation. My left side is affected. PD nurse just tweaked my original doses last October and it made a huge difference. Though my new problem was very poor sleeping. But we are all different and symptoms & response to different drugs vary hugely from person to person. Sorry I couldn't be of any more help

Trev12345

Thanks for the replies.

Yeah I was thinking should it have affected my left side so soon?

DivineR

That's a good question. But this PD thing is not consistent. I wouldn't let it go any further and try get an appmt. At least it will give you answers. 

Trev12345

Well it's over 2 months since I've felt this weakness in my left arm and it still there feels much I a worse it also shakes.

I have since in the meantime spoken to a PD nurse who said it shouldn't affect my right side and prescribed an additional tablet (62.5mg dispersable madopar) if I am feeling any slow down.

I have also seen a new neurologist at the MDC about a week ago and he didn't pickup on anything I explained my left arm was feeling a bit slow down but when he done his tests (eye movement,walking,balance,finger tapping) andhe only noticed that my right side is effected medication was working.

I am planning on seeing my doctor again and explaining it all (tomorrow hopefully) because atm all I am doing is lying in bed because I feel so bad.

Don't know if anyone has felt like this but just needed to vent because life ain't worth living atm!

daffy

Hi Trev

PD is a right pain, and it seems everyone of us is affected differently.

Hope you get some help from your Doctor. Have you tried the parkinsons uk helpline? They can often be quite helpful. 

This forum is the right place to vent your feelings as we're all travelling along a similar road.

Divine1

Hi Trev,

Please don't get too down. It sometimes takes a while for changes in meds to work. When you go to the GP, maybe ask for some psychological support. Frustration at not being heard is bringing on stress which can be debilitating. I feel for you and hope you get some answers at GP. 

Trev12345

Well I went to the doctors and she believes that the Parkinson's if affecting my left side she said to give my PD nurse a ring and see if they can add an extra tablet to avoid downtime.

She checked my reflexes and strength in my left hand arm and said that it still seems to be there which is what Parkinson's does you mind makes you think there is no strength.

I explained it is causing me to have the most easiest of tasks when the meds are not on i.e trouble of getting in to bed, wiping my bum (TMI i know!) washing myself etc...

I for one didn't believe that my Parkinson's would progress this quickly is it normal?

I guess it has to be Parkinson's or I would not have responded to the l-dopa?

 

daffy

Hi Trev

Sounds like you have a knowledgeable Dr. It's good when someone listens to you properly. I had no idea that Parknsons made you think there was less strength there.

Unfortunately Parkinsons seems to be so variable that I don't think there is a normal but yes l-dopa does make a difference.

Has anyone mentioned to you the value of exercise. There are some good easy to do stretches for Parkinsons shown on utube. They look simple but they are effective and can be done at home. I find that they do improve my posture and movement and of course there's the mental lift you get from doing something positive to try and combat Parkinsons a bit. Oh and Parkinsonsuk have an exercise dvd. 

 

 

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