Weakness in my hand extensor muscles with repetitive activity.

[Arabesque]

Hello - I hope all is going as good as it can for everyone this morning!

I have appreciated reading lots of your stories - thank you for sharing.

When I was diagnosed with YOPD, I already had a long history of restless legs and forearms. That itchy, creepy crawly, tickling sensation that drives you crazy unless you move - those of you afflicted understand the debilitating nature of RLS. Anyway, along with the restless sensation in the bulky muscles of my forearms on/off throughout most days, when my tremors started in '07 these muscles started to fatigue very easily if I am writing, typing, or any other repetitive activity that demands my hands to be extended (i.e. bent "backwards", held up as in position used in holding a writing instument, etc.). Obviously, this limits my ability to keep doing whatever activity I am doing - filling out forms, typing, sewing, scrapbooking/crafting (very sad as this is my passion), etc.

Does anyone else have this weakness either in their arms or legs (in legs it would be the muscles that extend your feet, i.e. bend upwards toward your shin, opposite of pointing your toes/feet)???? I have been told this is an uncommon complaint, however the onset directly correlated with the onset of my tremors/jerks. Would love to hear your story or any input/advice you may have.

I wish everyone the best possible health, happiness, grace, contentment. and good outlets for your frustrations/anger (: !!!

[Hidden]

I was diagnosed with PD in 2004. And my doctor thinks I had it for 10 years! That means I developed PD at age 43! I have gone through so many things and as you read posts on here you will find that everything you have asked about is part of PD and you are not the only one! That's what helps! I have problems with all the things you listed above but not to the degree of some on here. I did have DBS on just one side (because I started bleeding in the brain) and they had to stop! But it has helped me so much. I am now considering getting the other side done! It helps all these things and I am still on a lot of medications though. But hopefully that will change if and when I do the other side! It is not a cure, I know. But my hope is that a cure or a better way of treating PD will be found in the time this surgery will give me a little better quality of life! No one knows how long or even if it will work. And it doesn't for everyone! I feel fortunate for what it has done for me so far! But I still experience the things you have described. Read all you can that it shared in this chat room and research everything you possibly can for yourself and you will be helped! But always remember it's your Neuro you take your questions to! Because we are all so different and hopefully he/she will get to know you well enough to know what you need to change or try for you! Take the ideas and things you hear to your Neuro and leave the rest up to him/her! My best to you! Enjoy your week and try to keep as positive of an attitude as possible!

Blessings,

Carol

[Arabesque in reply to Hidden]

Sorry this reply is a year delayed! I didn't look into how to navigate this sit, then forgot I posted (I usually just read posts/replies). Your reply was quite helpful and reassuring. Thanks for taking the time to write a thorough and personal response. It's funny how neurologists will tell u that this or that issue is not related to PD yet there are many people w/PD who tell you that yes, it is related and they suffer w/the same symptom. Well, I wish you the best and hope you are doing well. Lisa

[cabbagecottage]

Yes my husband has great difficulty when using his hands . whether to write , and hold his cutlery . His hands especially from the little finget side claws in , his feet are turning over on the inside and his big toe especially turns upwards and across the second toe . . Of course this then rubs on his shoe . I usually put a small dressing on the big toes because they rub against the next toe as well as the shoe .

Not the easiest thing to do but I manage . I have tried some gel tubes but thought they would be too tight and affect his cirulation and also maybe cause a fungal problem . .

I think it is ONE of the reasons his mobility is so poor because you need your big toe for balance .

If it's not one thing it's another isn't it .

[honeycombe3]

This is such a common complaint, repeated over aeons on every PD site, that I am left wondering WHY IS NOTHING BEING DONE ABOUT IT?

As you may have gathered it is one of my many symptoms & has been before my dx 8 yrs ago age 55. I have surveyed doctors, patients, friends & relatives of PwP & not found one case of it being given more than passing consideration by those not suffering directly. The exception in UK is physio which treats symptoms but is no way a cure.

If anyone oput there has had or is aware of a PwP who has treatment (other than physio) could they please let me know via this site?

Maybe it's a suitable topic for a poll?