Sharing symptoms and experiences

Posted by dccjjuarez @dccjjuarez, Sep 3 6:14am

New video just released that I hope is helpful to some who feel alone in this Parkinson's journey. Thank you to those who contributed. 💕🌷 https://youtube.com/c/TheOWL21
Subscribers appreciated!

Interested in more discussions like this? Go to the Parkinson's Disease group.

Hello @dccjjuarez and welcome to Mayo Connect. You titled your discussion, "Sharing symptoms and experiences," I was wondering if you would share your symptoms and experience with PD? A lot of us on Connect have come to a PD diagnosis after many years of "ruling out" other possible diagnoses and/or being misdiagnosed.

Please share, if you will, how your diagnosis came about. For example, what symptoms were you having, how long before your diagnosis?

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I just had the DBS surgery done last week and hope to resume my piano playing as before my diagnosis. Does anyone know what kind of programming I should ask for when they fine-tune the system to get back my fine movements of the fingers ?

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TO share my symptoms and experience, I first had problem with my balance, when walking, my body tended to lean forward as if i'm going to fall forward, that when I knew I am in trouble. I then developped rigidity of my extremities , then slowness of my movements ( for instance, getting dressed takes a long time.) I did not have tremor that the majority of patients have. I stopped playing the piano due to rigidity, and unable to do gentle hiking that I enjoyed so much.

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@tuyetnga

I just had the DBS surgery done last week and hope to resume my piano playing as before my diagnosis. Does anyone know what kind of programming I should ask for when they fine-tune the system to get back my fine movements of the fingers ?

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Hello @tuyetnga

It is good to hear from you again. I'm glad to hear that you were able to have your DBS surgery. Regarding the programming, that is a process that doctors work on and it is best to talk with them about your goal to play piano again.

How long was the surgery? Did you feel well prepared for the experience?

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@hopeful33250

Hello @tuyetnga

It is good to hear from you again. I'm glad to hear that you were able to have your DBS surgery. Regarding the programming, that is a process that doctors work on and it is best to talk with them about your goal to play piano again.

How long was the surgery? Did you feel well prepared for the experience?

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My surgery was 2&1/2 hour , including the implantation of the stimulator in my chest. I watched a lot of videos about the procedure and attended conferences about it through my professional affiliation, so I had a good idea what to expect. Still, it was scary when they drilled a hole on my skull because I was awake and fully aware of it, but it didn't hurt. I am so thankful that I am doing well post-op with no apparent complication. There are a lot of online sessions that inform patients about this, I can't remember the name off the top of my head.

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@tuyetnga

My surgery was 2&1/2 hour , including the implantation of the stimulator in my chest. I watched a lot of videos about the procedure and attended conferences about it through my professional affiliation, so I had a good idea what to expect. Still, it was scary when they drilled a hole on my skull because I was awake and fully aware of it, but it didn't hurt. I am so thankful that I am doing well post-op with no apparent complication. There are a lot of online sessions that inform patients about this, I can't remember the name off the top of my head.

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Hello @tuyetnga

I appreciate the added information about your experience with DBS. I'm sure that it was unsettling when they drilled the hole in your skull. It does sound like you were well prepared and knew what to expect which is a good thing,

We do have others on Mayo Connect who are thinking about DBS and are looking for experiences of others. Can I mention you as a resource to them?

Also, will you please provide an update when you have your first programming to fine tune the treatment?

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@hopeful33250

Hello @tuyetnga

I appreciate the added information about your experience with DBS. I'm sure that it was unsettling when they drilled the hole in your skull. It does sound like you were well prepared and knew what to expect which is a good thing,

We do have others on Mayo Connect who are thinking about DBS and are looking for experiences of others. Can I mention you as a resource to them?

Also, will you please provide an update when you have your first programming to fine tune the treatment?

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Of course Teresa, you can have pts who are thinking about DBS contact me for info, I'll be happy to share what i know.
Will give an update after the first programming of my system in 2 weeks.

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@tuyetnga I am interested in learning more about your DBS results. I hope you are doing well.

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@ bruceandruth .
My DBS surgery went well, the system is set at a low setting to keep it working, I don't know how effective it is until my neurologist fine-tune it to optimize the response; i have an appointment for it in 2 weeks. will post an update after that is done.

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@tuyetnga

@ bruceandruth .
My DBS surgery went well, the system is set at a low setting to keep it working, I don't know how effective it is until my neurologist fine-tune it to optimize the response; i have an appointment for it in 2 weeks. will post an update after that is done.

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Thanks for your reply. I know you are anxious to meet with your neurologist in two weeks. Wishing you a great success.

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