Do any folks here with late stage pd have dystonic storms?

[beehive23]

Does anyone here have dystonic storms like below link and how do you cope with it? thanks for any advice....hang tough ....cut and paste link if it doesnt work....put the link in your browser they have it blocked here for some reason.

youtube.com/watch?v=76yyO9G...(Not working as expected?)

[beehive23]

if you put the link in fb it will go right to it...

[beehive23]

im sorry im meant "the real serious pd issues" not the "real " pd issues.

[Hikoi]

Where is the link?

[beehive23 in reply to Hikoi]

youtube.com/watch?v=76yyO9G...(Not working as expected?)

[ddmagee1]

Dystonia is difficult to deal with, for sure! I get dystonia with my toes, feet cramping. My toes have curled, due to PD! I sometimes stumble, and have started to lose my balance, and fall, because of the Dystonia! I was not able to bring up the video link, so don’t know for sure, if my toe problems and foot cramping, would fit into the category of Dystonic Storms! Anyway, I surely can empathize with you, beehive23!

[Manypony in reply to ddmagee1]

I have toe curling, 3 products Help me: correcttoes, yogatoes, and YogaSandals

[beehive23 in reply to Manypony]

i had a friend who passed from pd he had to have his toes tendons severed due to overwhelming pain from the bird claw effect. i have that as well and sometimes i tie a board on my foot to keep toes straight. Hang tough manypony! sorry to hear about the blueberry situation! hang tough manypony! cheers....

[Allypally49 in reply to ddmagee1]

Look up dystonia and the use of botox

[ddmagee1]

Thanks for the link beehive23! After reading, and understanding the researcher’s medical analysis, I would say, that I have not had Dystonic storms, per se! The closest I came to that, though, before I was diagnosed with PD, was that, about 18 years ago, when I was on a vacation trip, with my family to Canada 🇨🇦, out of the blue, while shopping with my daughter in a grocery store, I had a series of grand mal tonic/clonic Seizures, where I went unconscious! It was so bad, that I was on the verge of status elliptic stage! My daughter is a nurse, so she did all the right things! Of course, the ambulance came, and I was out of it for so long, that it was about 5 hours later, when I woke up, in the hospital, and found out what all the fuss was about! I had to be transported back to a USA 🇺🇸 hospital, where I was in hospital, for a week, while recovering, and multitudes of tests were taken. I was put on an epileptic drug, Depakote. Several years, after that, I started having obvious PD symptoms, but was not diagnosed, till about 6 years ago. So, that’s my story! I hope I don’t progress to having Dystonic storms! Thanks again for sending me the info. You are surely appreciated, with this blog, beehive23! Take Care!

[beehive23 in reply to ddmagee1]

Wow.. quite the story...thank you for sharing. Do yo still have epilepsy or did it morph into pd?

[ddmagee1]

That’s a good question! Fortunately, I have not had any more seizures, since that trip to Canada. I was on Ambien, sleep medicine, because I have trouble sleeping more than four hours at a time. Immediately, I stopped that. I had only started it a week before the seizures. I still have the same sleep issues; however, now I sometimes have vivid, scary nightmares.

[beehive23 in reply to ddmagee1]

Vivid dreams are horrible! Im glad you havent had any Grand Mals lately..Hang tough!