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Living with Parkinson's Disease - Meet others & come say hi
Parkinson's Disease | Last Active: May 1, 2023 | Replies (471)Comment receiving replies
No worries, @stephenmcelroy. This page may be helpful as you get to know the Connect site https://connect.mayoclinic.org/get-started-on-connect/.
If you click on reply below anyone's response to you and also use the @____ (the member's username), it will help to be sure that the person you are addressing sees that you are talking with them. I also suggest clicking on VIEW & REPLY in any email notification, so you go on the site and see the whole context of a discussion.
Replies to "No worries, @stephenmcelroy. This page may be helpful as you get to know the Connect site..."
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@lisalucier Have not had further discussions with primary care who diagnosed 3 weeks ago, nor set up appointment with neurologist. Have been researching as much as possible to understand as much as possible. So far hand tremors are the only apparently involvement. Right hand first noticed about 4 years ago, as I recall (maybe more). Left hand noticed about 1-2 months ago. Am getting ready to follow up with a doctor. Possibly at Mayo Clinic.
I live in WV. Unfortunately in WV my experience with doctors is, some are good to excellent others not so. My wife had a questionable experience with one neurologist here and I have with another, especially regarding what they think they hear and understand about what you are telling them, as well as a cursory explanation of their solution and why. I have developed a somewhat cynical philosophy of "there is a reason they are practicing in WV as opposed to Manhattan or Beverly Hills." Because of this I like to research extensively to be able to ask intelligent questions and understand when I am getting intelligent answers (or not). I agree with what someone said (on this site I believe) that it's a great idea to be your own best patient advocate.
I understand that the disease progresses differently for different people. I am thankful for the experiences being related by patients and their spouse/care givers as to their experiences with timeline progression they experienced. Gives me a frame of reference to start from and what to look for and ways to deal with it. Thus being able to research those aspects far in advance as opposed to a more panicked rush if something is sprung upon me. DBS, for instance.
Still looking for more info as to what I might possibly expect going forward. My limited understanding at this point is tremors, freezing, memory problems, depression, effects on care givers... all of which I will be looking to expand my knowledge base on both what they are, how they progress, and available solutions/assistance available... as well as additional aspects of parkinson.