Suddenly scared


#1

I've been dx since April 2013, after being under neurology for 7 months having endless tests to assess why my left arm was not working etc. I'm now on Madopar 6 doses a day and feeling more mobile but with off times. Over the year I've really tried to adjust to the changes in my life and have managed to keep as up beat as possible. The reason I've come to the forum today is that on waking up to my alarm this morning I could not physically move either arms from my sides to switch it off.

This is the first time that I have noticed anything on my right hand side which I have to say has scared the hell out of me. oddly yesterday I had my most physically able day and some exciting things going on which led me to be hyper an do my new trick of gabbling on and on and on.

Has anyone else noticed a sudden change in their pd symptoms due to high running emotions?

My consultant has said that my DAT scan shows depletion of dopomines on both sides which is why today is really stressing me out(which I know really is far from helpful to anyone especially if you have pd) .... think some relaxation techniques may be in order. does anyone have any recommendations?


#2

have you tried taking slow release meds at bedtime to help with your mobility during the night i am on sinemet cr and they have really helped me.


#3

Hi Gus, thanks for your response. I'm on Madopar cr at night as I was really struggling. This worked really well but something went wrong this morning . I'm starting the tracking research programme tomorrow where I'm hoping I met get to catch up with my consultant. I went to bed at 9 and also had a big steak so perhaps it was 10 hours between meds and high protein do you think? I'm just upset by the set back ... I'm 37 with a 10 & 11 year old and desperate to be on some sort of even keel. 


#4

i think pd drugs work better on a empty stomach ,i know this is  the case with sinemet, but do not know if this is the same with madopar.hope you can get some answers im 42 and have had pd for 8 yrs so i know what its like to be so young with pd.also had dbs.


#5

Hi Gus had my madopar increased as of today so hope I will see the difference. I've also been referred to an osteopath who has has a special interest in people with pd ... My consultant is very hopeful that between the 2 I will get  my body back. It's really put me in a positive and hopeful mood . Is DBS  the brain stimulation ??? I'm useless on these abbreviations! If so how dies it work and how did you find the results? 


#6

yes dbs is deep brain stimulation,and it has worked really well for me.you can goggle dbs  and  that will give you more info as my typeing not that good.


#7

Thanks Gus will do. Typing is a nightmare isn't it ! I've gone from 60 words a minute to typing slowly with one hand urrrggghhhhh! 


#8

sorry about that 60 words a hour for me neutral