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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

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?

@annissha

I am Anita and live alone in a very remote area, with my chickens and a few goats. I have decided to try this to see if anyone has ideas of what to look for in a new doctor, or even how to find one. My first doctor is moving away (he really was nice but did not seem to know a great deal about Parkinson), he is a Neurologist. Any suggestions would be appreciated Anita

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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?

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@annissha

I am Anita and live alone in a very remote area, with my chickens and a few goats. I have decided to try this to see if anyone has ideas of what to look for in a new doctor, or even how to find one. My first doctor is moving away (he really was nice but did not seem to know a great deal about Parkinson), he is a Neurologist. Any suggestions would be appreciated Anita

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@annissha

Hi Anita

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?

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@johnbishop

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?

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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

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@hopeful33250

@annissha

Hi Anita

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?

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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.

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@annissha

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.

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@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?

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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.

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@annissha

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.

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@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?

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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

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@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!

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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

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@annissha

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

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It takes us all a long time to wrap our minds over a diagnosis like this. So, yes, please stay in touch, @annissha, keep reading, and learning. One thing that I've learned about chronic illnesses, like PD, is that the more informed you are the better you are.

I would like to invite some of our other members to post and introduce themselves to you including @mariemarie, @susan62, @ggopher, @betsyp, @stephenmcelroy and @johnjames.

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Hi to all! I am new here I was diagnosed with Parkinson's about 19 months ago but would not allow myself to believe it. Though I did try the medications for PD but they made me see things and have terrible dreams which only helped me to think "I did not have PD" then to make matters worse my neurologist said that "I must not have PD because the meds for PD would not affect me that way if it was PD"! I have been taking Propranolol HCL 20 mg.my regular doctor prescribed this medication for my tremors, I can take them up to 4 times per day but try to take only twice a day as I am afraid if my body gets use to this medication I will once again have to go back on the PD meds which make me crazy. I am from a small area so we do not have a big selection of neurologist or family doctors. I hope to find information and others with PD to share with

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@sherrieshe

Hi to all! I am new here I was diagnosed with Parkinson's about 19 months ago but would not allow myself to believe it. Though I did try the medications for PD but they made me see things and have terrible dreams which only helped me to think "I did not have PD" then to make matters worse my neurologist said that "I must not have PD because the meds for PD would not affect me that way if it was PD"! I have been taking Propranolol HCL 20 mg.my regular doctor prescribed this medication for my tremors, I can take them up to 4 times per day but try to take only twice a day as I am afraid if my body gets use to this medication I will once again have to go back on the PD meds which make me crazy. I am from a small area so we do not have a big selection of neurologist or family doctors. I hope to find information and others with PD to share with

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Hello @sherrieshe and welcome to Mayo Clinic Connect. It is good to have you join the Parkinson's discussion group.

Yes, I know the feeling of, "not allow myself to believe it." I had a similar experience. It takes a while to wrap your mind around a chronic illness like Parkinson's, doesn't it?

From your post, I'm not sure of your age and you do not mention other specific symptoms other than tremors. Have you also had balance, walking, falls, or speech problems? Were you prescribed Sinemet for your PD (also known as Carbidopa/Levodopa)?

The correct medicine and regular exercise are the best ways to keep PD from becoming too debilitating.

Do you exercise on a regular basis?

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@johnjames

Thank you Teresa- Yes, I would like the information of the DVD, THANKS……I say this with no regrets, my spouse has allot of memories issues and she needs me to drive more than not, She is a wonderful person about not complaining until just in the last couple months– which the Doctors told me that it is normal. She tried her best to be helpful for me and she does allot of good things-others could not. But it still very hard, she doesn’t know the depression is so sever and constant- The medication helps very little and I see my Doctor and I tell him of the situation- but some things we just can;t do or fix. This group helps more than anyone could imagine. Barrow’s is great- but they don’t take my insurance or my the times I need to meet-which I understand, I’m still looking for a group I could sit with and listen. But again this group is awesome and Colleen does a great job. I Thanks God I found you all. Thank you, your very kind and caring jjames

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What I have used to help me with PTSD and depression is to consider them the enemy and I will fight them to the end; by the way thank you for serving and I am happy you made it home.

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@oldsalt1947

What I have used to help me with PTSD and depression is to consider them the enemy and I will fight them to the end; by the way thank you for serving and I am happy you made it home.

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Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do you have Parkinson's disease? How are you doing today? I look forward to learning more about you and your journey.

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