Stress and Parkinson's symptoms

@nova11723 Oh no, don't be sorry. This is one place we can share. I will check out Requip.

@hopeful33250
I will make an effort to get in touch with you And try to get through to the Mayo Clinic in Arizona. I think that is closer than Minnesota.
I’ve already been through the University of Washington system several times over the past few years. I’m sure it’s just as difficult for me there as it will be at Mayo.
Thanks for your concern

@goatgirl28
Thanks for your comment. I appreciate your support.
Yes, this is a devastating disease and my case is particularly concerning at least to me.

I should have mentioned previously that I’ve had deep brain stimulation surgery. Unfortunately, it has not worked out for me as well, as I would have liked at least with respect to treating the dystonia.

@coho222
You mean dystonia in your feet? That is the worse symptom for me by far. Luckily, I only get it in the morning before I take my medication.

@coho222
Keep fighting! Sometimes this disease seems like it is dominating you, but then you can unexpectedly snap back. Finding the right cocktail of medicine is not always a straight-forward thing. Each hospital needs a Dr. House.

Actually, my dystonia is a Tardive dystonia , Caused by a medication I took from my primary care. It affects my hamstrings and I have had severe pain in my buttocks at the hamstring attachments for over four years. I’ve only recently started to develop dystonia in the calves. As a result, I’m fairly weak and dizzy.
And yes, I am looking for a Neuro gastroenterologist who can deal with these complex issues.

The gastroparesis I have, which is probably related to my Parkinson’s and getting Dilaudid injections from my primary care before he realized that I had Parkinson’s And that my butt pain was dystonia and Does not respond to narcotics. In any case, because of the gastroparesis, my medication‘s are not really working very well because they’re not being metabolized in the right part of my digestive system. So despite taking large doses of carbidopa levodopa in the form of Rytary ;What were those of you who don’t know is a long acting carbidopa levodopa. I currently take five doses of Rytary Starting at six in the morning every morning and ending up at 7:30 in the evening. A majority of the constipation I have is related to the carbidopa Levodopa. However, things are going to change for me real soon as I have been approved for VYALEV, Which is an injectable form subcutaneous. It requires that I wear a pump 24 /7. I’ve been told it takes a while to get your dose correct but it should eliminate much of the constipation. This is a pretty big deal for me. Hopefully, it’ll help.

@windyh One thing that helps me is to rely on my humor. For instance, I am exceedingly luck that the halllucinations I have from the l-dopa are not scary ones For instance,the first time I had my auditory hallucination was when I was in the hospital getting my pump set up, I was aware to expect hallucinations. The first one I had --and apparently is going to be with me for the duration, is a men's choir, composed of mn from the land where I spent my formative years - Texas. The first time they visited me i kept hearing them and they sounded like they were just below my windo in the hospital singing and chatting on breaks When you do the reality check: It's raining right now. It's 2 am iand I'm in a hospital in Germany. Whaat is th e likelihood that a bunch of Good Ol/ boys from Texas would have formed a chooir to sing outside my indow in a hospital, and even if the hospital DID have a choir, most certainly, it wouldn't be composed of those good Ol boys. My one compalint was that they only knew one tune - the music from CSI - Las Vegas. I reallly became weary of it and wished they would lean more songs> I expecially longed for ome deep baritones, like the guy in the Statler brothers , or like Josh Turner. Jut listing to those deep, deep boicrs still curls my toes even if I am over 80. Well, today I got part of my wish. They played me a song that wassn't thetheme music o CSI: Las Vegas. It was a song ghat moms and granmom hear and sing from time to time. It was "Five little monkeys jumping onT he bed." It's a good thing they waited to introduc me to oit until today, because if they had started singing it on Tuesday,when I was attending ou granddaughter's high school graduation ceremony, I might have been invited to leave the auditorium. The cermony lasted for 4 hours; but I guess that what I get for marring a guy whose lat name starts with W instead of the one whose name Sgared wiith B.Oh, well...

having a tough time coping today. any encouraging words?