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?

@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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@sandycerem Yes, Parkinson’s is a varied disorder – and it affects everyone differently. Continuing speech therapy is a good thing and reading out loud – perhaps you could take turns reading out loud to each other – it helps the voice but it is also a good cognitive exercise I’ve been told. Depression is very common with PD because there is a change in brain chemistry with PD. On June 1, I posted an article from the Michael J. Fox website regarding Moods and Parkinson. You might take a look at it – I believe it will be helpful for you both. Have you mentioned his depression to his doctor yet? Support groups are also very helpful. Have you attended any Parkinson’s support groups together? Teresa

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@david59 Hi David: I was thinking about you – you had posted about “freezing” with Parkinson’s and I was wondering how you were doing. Have you talked with your doctor regarding the freezing, yet? Any improvements with this problem? Teresa

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Hello to everyone. I just received my diagnosis today and am still in a bit of shock. I am happy to find this forum so quickly and look forward to both giving and receiving support.

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@bobbieingeorgia Hello and welcome to Mayo Connect. I am also happy that you found this forum so quickly. We have many members who are more than willing to be supportive and helpful to you. We all recall the day when we received the diagnosis and remember that it was understandably a shock. I would like to invite our members to join me in welcoming you, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. We look forward to getting to know you better. Please share with us, as you feel comfortable doing so, a little information as to how this PD diagnosis came about. Have you been noticing changes for a long time? What symptoms led your doctor to diagnosis PD? Teresa

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@hopeful33250

@bobbieingeorgia Hello and welcome to Mayo Connect. I am also happy that you found this forum so quickly. We have many members who are more than willing to be supportive and helpful to you. We all recall the day when we received the diagnosis and remember that it was understandably a shock. I would like to invite our members to join me in welcoming you, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. We look forward to getting to know you better. Please share with us, as you feel comfortable doing so, a little information as to how this PD diagnosis came about. Have you been noticing changes for a long time? What symptoms led your doctor to diagnosis PD? Teresa

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Hi Bobbie, 

It was a shock, but at least it replaced uncertainty over seemingly random symptoms with something that had a name and treatment.

A medical team you trust is critical, but this group is a great resource of folks with personal experience.

Steve  

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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Hello @techi While I’m not a medical professional I can only give you some information from my research. Here is a website from Mayo that lists different tests that are done to diagnose MS, http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/diagnosis/dxc-20131901 Did you have a brain MRI or lumbar puncture tests?

With regards to diagnosing Parkinson’s, here is information from Mayo’s website that explains how Parkinson’s is diagnosed. The diagnosis for Parkinson’s is not as clear-cut as the method to diagnose MS, http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/tests-diagnosis/con-20028488

Did a neurologist diagnose you with these disorders? Are you being treated with meds now? How are you feeling? Teresa

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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I was just told from the nurse at the Mayo clinic I need to have a ultrasound of my liver. Because I had several extra veins in my liver. My doctor wanted that done in 2015 before my surgery and it wasn't done. And my neurologist said she is going to do a pep test if that comes back normal then they will have to be trained to not fall out when I know I am going to fall. That seems a little crazy because I don't always know. So I'm still just a little confused.

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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@techi I am sorry to hear about the confusing messages. Do you have someone (family member or friend) who can talk with your doctor or nurse on your behalf and then explain to you what is happening? Teresa

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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Im just waiting until i have these test done. I have to call tbe rheumatolgist she wanted to see me also. I’m just a rare case and at least the mayo clinic is doing more for me then i have been getting for years. I was amazed at the first day i saw the internal medicine doctor she setup so many appointments and they drew 19 tubes of blood in one day. And this last time they ruled out alot of things. So we will see what’s next.

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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@techi I am glad to hear that you are at Mayo and getting such good care. Please keep in touch with us and let us know how you are doing. Is your next test scheduled sometime soon? Teresa

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is it possible for me to be member having dystonia not PD. Many PD people suffer from both, but I only have Dystonia.

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@AgentDarien

is it possible for me to be member having dystonia not PD. Many PD people suffer from both, but I only have Dystonia.

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Hello @101082101082

Yes, here is the link which will take you to a discussion on Dystonia, https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

Also, here is some information about dystonia care at Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/dystonia/dystonia-care-at-mayo-clinic/ovc-20163833

Teresa

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My husband maybe does or maybe does not have Parkinsons. We’ve been seeing his doctor for about a year now. He may also have or not have Benign Essential Tremor or perhaps he has both. We just finished an EEG for brain activity and don’t have results yet. He has tremors in both hands and his head and neck primarily. My question is…….has anyone or a caretaker of anyone with Parkinsons had the following symptom? My husband has a pressure that starts in his chest and goes to his head…a head rush basically that creates fainting, dizziness and extreme fatigue. He has these ‘episodes’ once or twice a week. The doctors aren’t sure…..hopeful someone out there might have some insight? Thank you and bless all the caretakers and people with this disease.

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Hello @cindylb

I can’t say that I’ve ever heard of that particular symptom before, but Parkinson’s affects everyone differently. Perhaps someone else in our group will be able to relate to it.

You mentioned that his doctors are not sure about his diagnosis. Have they ever tried him on a low dose of Sinemet (Sinemet is the gold standard for treating Parkinson’s)? Often times if a patient responds to the treatment that helps to confirm a diagnosis.

Teresa

Liked by Lisa Lucier

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Thank you Hopeful. My husband was on Sinemet and then also on Primidone (for the benign essential tremor). He is now off the Sinemet to see if the tremors become worse (which they have not). He is still on the drug to treat the essential tremor but still has tremors. It’s a bit of a mystery what he does or doesn’t have. The doctors can’t seem to identify anything that causes the head rushes. He also has COPD but the doctors don’t think that’s contributing to the tremors. It’s a real mystery.

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