Living with Parkinson's Disease - Meet others & come say hi
Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.
Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Parkinson's Disease Support Group.
Hello @annissha, Welcome to Mayo Clinic Connect. The Parkinson's Foundation has some information on Finding the Right Doctor here: https://www.parkinson.org/expert-care/Patient-Centered-Care/Finding-the-Right-Doctor. @hopeful33250 and other members may also have some suggestions for you.
Did your current doctor have any suggestions for you?
When you are looking for a neurologist to treat Parkinson's, a movement disorder specialist is your best choice. This group of neurologists have special training in Parkinson's as well as several other disorders. You do not mention the state where you live, however, a teaching hospital, medical school or other multi disciplinary health center (like Mayo Clinic) would undoubtedly have movement disorder specialists on their staff.
Could you share a little about your history with PD? How long ago were you diagnosed? What is your most difficult symptom right now?
He just left without any opportunity for me to have any communication with his but I did get some good ideas here to know how to find a different doctor. Thank You
Thank you for asking, I have been diagnosed a few months ago and I try not to put every problem I have under the "Parkinson" label because I don't want to focus on the negative things in my life but I feel sure that my issue of swallowing has to do with my PD.
I also know that there is not much can be done about any of this but it feels comforting to talk to others so thanks so much for being there.
@annissha Hello Anita,
Yes, I agree with you that the swallowing issue is the most difficult for me. If you can get a referral to a speech therapist they can help with that. Speech therapists can give you exercises for swallowing problems.
I'm glad that you joined Mayo Connect. I hope that it continues to be comforting to talk with others. Are you taking meds for your PD?
Thank you for your reply, I would have never thought a speech therapist could help with swallowing! But will sure try and see if I can find one that is accessible
I am taking carb/levo as a drug and it helps with the shakes.
@annissha Hi Anita,
Yes, I always mention speech therapy to PD patients who have swallowing problems because it is not a well-known fact that speech therapy can help with swallowing. In addition to the speech problems with PD, I also have a paralyzed vocal cord and I have had surgery to help with that. Speech therapy has been my go-to for help with both a raspy voice as well as swallowing problems.
Do you have any speech problems? I'm thinking of things like a raspy voice, extremely soft voice, or other speech projection problems?
Teresa, Yes, I think I have some problems with speech that could be connected to my PD, again I'm having a hard time emotionally connecting problems to my PD because it feels like a copout but on the other hand here is the place I can talk about it. Thank You Annissha (I feel safer going with that name….being on a post like this is new to me. Thank you
@annissha Hello Annissha
It really isn't a cop-out at all. Remember that PD is somewhat of an organic brain disease. What affects the brain can affect all parts of the body. I would suggest that you contact the Parkinson's Foundation and ask them to send you some information about Parkinson's (or just check out their website). The Michael J. Fox organization also has lots of good information as well.
I would also encourage you to look at the many discussions we have about Parkinson's here on Connect. There are discussions about speech and swallowing, https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/; constipation, https://connect.mayoclinic.org/discussion/constipation-and-parkinsons/; handwriting problems, https://connect.mayoclinic.org/discussion/parkinsons-and-activities-of-daily-living/; breathing difficulties, https://connect.mayoclinic.org/discussion/difficulty-breathing-autonomic-dysfunction-w-pd-congestive-heart/;
loss of smell,https://connect.mayoclinic.org/discussion/lose-of-smell/.
As you can see, the list goes on. It would be a good idea to make a list of troublesome symptoms to take with you when you meet your new neurologist so that he/she can have a handle on what you are experiencing.
I'm glad that you are here. Keep posting and asking questions!
WOW, so many resources!!! Thank you, I have to pray about my acceptance regarding this problem. Be watching what others have to say and be in touch Annissha