Hello all


#1
I'm 1 and a half years Diagnosed with pd. I have enjoyed reading some of the posts in the forum , it's good to know that there is somewhere we can talk about our experiences.

One post described how someone with PD
Missed hearing his son and wife laughing (they were not doing so for fear of upsetting him) and he told them not to be so daft, he loved to hear them laugh.
.....I think that you should try to keep a sense of fun if at all possible.

I am 57, male, Live in Birmingham, and I work part-time in IT, I like to hike, play music, tennis and have most of the usual vices.


My symptoms are left shake, fatigue, slow/stiffness and a general anxiety/stress. One symptom I have that I wonder if anybody recognises is as following… I sometimes have a sort of convulsive strain from my midriff up to my head which makes me rock a litle , it's not a typical symptom of PD and no one knows what causes it.... not the specialist nor the PD nurse. Does it ring any bells for anyone ?


Andy – OjalaHey

#2
Hello Ojalahey and welcome to the forum,

That was my family you are talking about, and yes you do need to keep a sense of humor , we are very lucky as both my husband and our son have great quick wit, I am the one who doesn't get the joke!
I haven't heard of the symptom you are having so can't help you there, I wish you well on your journey of life with PD, keep a positive attitude and keep as fit as you can both physically and mentally and this will help a great deal.
best wishes
vivian

#3
Oddly, I think I have had that happen to me. It was a number of years ago and I was reading in the public library when suddenly I felt a rippling shock through my upper body. I thought something must have happened elsewhere in the building that caused the shock, but I looked around and nobody else seemed to have experienced it. I thought I must have momentarily fallen asleep and dreamed the incident but it happened a few more times over the next month or so while I was wide awake. It went away and has never returned.

Although I was diagnosed only 1.5 years ago, I encountered several PD-like symptoms for years prior to diagnosis. Maybe this was one of them.

#4
perhaps its not reported much a) because its difficult to describe b) its hard for neuros to test - if it can't be tested it aint worth noting seems to be the motto.
i have been getting something similar between meds. i know of several other people who have too.
a different thing is myoclonic dystonia which a forum member was diagnosed with recently which, i believe, involves a rapid and rather violent jerk.

#5

Hi All. I am new to the forum, too, and have had PD for several years although recently diagnosed about a year ago. Since my mother had PD many years ago, I waited 10 months until I could get in with the best neuro in the area whose specialty is PD (so many other doctors make errors since it's SO difficult to diagnose). She has been wonderful - informative, thorough, etc. At a recent appointment, she said I have myoclonic jerking as part of the PD; however, it can also get worse as a side-effect of meds, so she is taking me off requip (it was also giving me headaches and making me nauseated). Hopefully, the new meds will help. Meanwhile . . . my body parts make sudden jerking motions. I've had tremors for a long time and those are progressing to the right side; started out on the left. I also have had electric shock episodes that are not fun - in the head and it feels like I've been shocked and I hear a sound [fortunately these are rare]. Learning to move forward one step at a time.  Much to learn. So glad I found this site--I love the humor and strength exhibited. BTW, you can set your mouse and computer controls to be less sensitive (that helped me with the mouse).  I'm in the U.S. - had to go across the pond to find you folks.  Thanks!

 


#6

the electric shocks are  sort of zzzzzzzzzzzzzm sound in your skull? they generally take place while falling asleep without sufficient medication.