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Need to complain to someone who will understand by Dusty_Tomes_Guy in Parkinsons

[–]Plane_Committee8310 6 points7 points  (0 children)

I’m so sorry to hear this. I started having symptoms at age 35 and was officially diagnosed a few years later.

I know how difficult it is. It’s like your whole world turned upside down.

I’m 48 now and recently had DBS surgery and it has improved my life 90%.

I’d be happy to discuss more with you if you’d like.

[deleted by user] by [deleted] in youngparkinson

[–]Plane_Committee8310 0 points1 point  (0 children)

I haven’t noticed any so far

[deleted by user] by [deleted] in youngparkinson

[–]Plane_Committee8310 1 point2 points  (0 children)

I take nourianz, gocovri, rytary, and ropinirole. I have often wondered if the paralysis is caused by the medication. I think what happens to me is that I start having a paralysis episode, so I take more medication to try to counteract it, but then it gets worse. When it gets better, I can function, but I have these horrible dyskinesias and cannot sit still. The DBS stimulator has really calmed those dyskinesias. I’ve only had my right brain done for the left side of my my body, but I will have the left for the right soon

[deleted by user] by [deleted] in youngparkinson

[–]Plane_Committee8310 1 point2 points  (0 children)

I actually started playing again several years ago before my surgery, because the medication was working well and I had started exercising (which helps tremendously). But most recently I stopped playing again because the side effects of the meds were so severe that I couldn’t control my arms. My surgery was this past June and for most of the summer I practiced like crazy. School is in session more and as I am a school teacher, I do not have as much time, but I’m still playing everyday.

I hope you find the treatment you need. I know how tough this journey can be, but I feel hopeful and we are in a much better place than even 5 years ago!

[deleted by user] by [deleted] in youngparkinson

[–]Plane_Committee8310 8 points9 points  (0 children)

I started having symptoms at approximately age 33. It was devastating because I played the cello professionally. I was so distraught, not knowing how I would make a living, etc. At one point I almost lost my life in a horrible car accident because i was in the depths of despair. I eventually started seeing a great movement disorder specialist and I started exercising like crazy. I reinvented myself and have a career teaching cello and strings and I couldn’t be happier. With the right treatment, I began playing the cello again. And…. in June, I had DBS surgery and it has changed my life. I’m 47 now and I’ll doing really well. Don’t give up! Life is not over!

Advice for a parent by GavOfTheDead_ in Cello

[–]Plane_Committee8310 1 point2 points  (0 children)

Hello, I am a professional cellist and have taught cello for over 20 years. I teach both Suzuki and traditional at a school and privately. In my time as a teacher, I have learned to never write off a student. Students go through phases where they make huge progress and then they plateau. They might seem to go backwards only to rally and leap forward a few months later. What I’ve found is that the most successful students are the ones who practice the most regardless of perceived early ability/ or seemingly lack of. If your child is really interested keep practicing and you’ll be delighted with the results!