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?

@ramblyn

My husband has Parkinson's and we live in The Dalles, Oregon. We are very fortunate to have a couple whom run a twice a week exercise program here. This program has been going on for about three months. Participants are in various stages of this disease. With the exercises, everyone has made so much positive progress.

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It is so good to hear from you, @ramblyn.

I am sorry to hear of your husband's PD diagnosis, but so pleased that he has exercise classes that he can be a part of. Exercise really does make a difference in delaying disability associated PD.

I look forward to hearing more about how your husband is doing. How long ago was he diagnosed? What were his main symptoms that led to his diagnosis?

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@hopeful33250

It is so good to hear from you, @ramblyn.

I am sorry to hear of your husband's PD diagnosis, but so pleased that he has exercise classes that he can be a part of. Exercise really does make a difference in delaying disability associated PD.

I look forward to hearing more about how your husband is doing. How long ago was he diagnosed? What were his main symptoms that led to his diagnosis?

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My husband was diagnosed about 5 years ago. He has many tremors for a few years before he went to see a neurologist. With very basic treatment here, we arranged to have an evaluation at the Mayo Clinic in Scottsdale, Az. while already down there during the winter. The evaluation there was very thorough.

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@ramblyn

My husband was diagnosed about 5 years ago. He has many tremors for a few years before he went to see a neurologist. With very basic treatment here, we arranged to have an evaluation at the Mayo Clinic in Scottsdale, Az. while already down there during the winter. The evaluation there was very thorough.

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He also had a two hour dementia evaluation on another visit. I notice lately after dinner, he has added some teeth chattering and other facial movements.

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@ramblyn

He also had a two hour dementia evaluation on another visit. I notice lately after dinner, he has added some teeth chattering and other facial movements.

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Hello @ramblyn

I suppose he is taking Sinemet (Carbidopa/Levodopa) Has his doctor offered him a script for Amantadine? For some of us, this med helps with the tremors and extra movements associated with PD.

Do the tremors tend to be on his "off-times" with his med?

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@hopeful33250

Hello @ramblyn

I suppose he is taking Sinemet (Carbidopa/Levodopa) Has his doctor offered him a script for Amantadine? For some of us, this med helps with the tremors and extra movements associated with PD.

Do the tremors tend to be on his "off-times" with his med?

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No, not taking Amintadine. Will look that one up. He has three carbs-leva (100 mg.) at Breakfast and Lunch. Then 2 1/2 before dinner and that is the timing I see the chattering.

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Hello – I wanted to let you know that one of the Mayo Clinic Connect members active in this discussion, "Living with Parkinson's Disease – Meet others & come say hi," @hopeful33250, is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post published today. The post includes video of @hopeful33250 talking about how she found Connect and experienced camaraderie there, but also a way to help other people through encouragement and pointing to resources. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

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Hello world! I am 68 years old. I was diagnosed with Parkinson's yesterday. I have had some minor chattering of teeth for some time (several years) which has not seemed to change. My right hand has had trembling for at least 5 years and has progressed to the point where writing is nearly impossible (painstakingly difficult at best) and very problematic for mouse pad control. I use my left hand when needed but over the past month or so noticed it to was developing minor shaking. Not any real issue yet. When I run into any difficulties I pray and release my problem to God trusting in his plan for me that his will, will be done. I have been dieting and exercising relatively regularly for about 4 years. Thinking of taking up Ty Chi which I saw was recommended for Parkinson's. Had a knee replaced 2 years ago and worked hard in recovery. I tore a rotator cuff a year ago and changed exercise from weights and "gorilla training" to isometrics and passive low impact muscle exercises.

I have been politically active for about ten years working for candidates and on issues at the local, state, and some national candidates and issues. I may switch my focus somewhat from all that, in order to address much needed home maintenance before that becomes impossible for me in the future. I have not yet told my family or friends. My wife is 5 years older than I and not in as good a physical shape as she has a below the knee prosthesis which can be problematic. My 3 children and 3 grandchildren live several hundred miles away although 2 of my wife's siblings and their children live within 15 miles… theirs is not a particularly close family and my extended family is several hundred miles away.

I would expect most would be depressed from this diagnosis and I think about that and presume I have some depression but while I am not happy about it, my attitude is that "it is what it is." I love doing research and found this group during my research of Parkinson's. Exercises, stretching and some meds to manage the symptoms and quality of life seem to be what I need to concentrate on physically. I am in fairly good physical shape which is a good place to start.

Well, that is me probably giving too much information. I generally do not talk much (except for some political subjects) but I do enjoy this type of internet writing.

2018-Stephen-1-e15489510499412

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@stephenmcelroy

Hello world! I am 68 years old. I was diagnosed with Parkinson's yesterday. I have had some minor chattering of teeth for some time (several years) which has not seemed to change. My right hand has had trembling for at least 5 years and has progressed to the point where writing is nearly impossible (painstakingly difficult at best) and very problematic for mouse pad control. I use my left hand when needed but over the past month or so noticed it to was developing minor shaking. Not any real issue yet. When I run into any difficulties I pray and release my problem to God trusting in his plan for me that his will, will be done. I have been dieting and exercising relatively regularly for about 4 years. Thinking of taking up Ty Chi which I saw was recommended for Parkinson's. Had a knee replaced 2 years ago and worked hard in recovery. I tore a rotator cuff a year ago and changed exercise from weights and "gorilla training" to isometrics and passive low impact muscle exercises.

I have been politically active for about ten years working for candidates and on issues at the local, state, and some national candidates and issues. I may switch my focus somewhat from all that, in order to address much needed home maintenance before that becomes impossible for me in the future. I have not yet told my family or friends. My wife is 5 years older than I and not in as good a physical shape as she has a below the knee prosthesis which can be problematic. My 3 children and 3 grandchildren live several hundred miles away although 2 of my wife's siblings and their children live within 15 miles… theirs is not a particularly close family and my extended family is several hundred miles away.

I would expect most would be depressed from this diagnosis and I think about that and presume I have some depression but while I am not happy about it, my attitude is that "it is what it is." I love doing research and found this group during my research of Parkinson's. Exercises, stretching and some meds to manage the symptoms and quality of life seem to be what I need to concentrate on physically. I am in fairly good physical shape which is a good place to start.

Well, that is me probably giving too much information. I generally do not talk much (except for some political subjects) but I do enjoy this type of internet writing.

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LOL! Did not expect the photo to display THAT large!

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Hi, @stephenmcelroy – welcome to Mayo Clinic Connect. Wow – yesterday – that is a very new diagnosis. Despite the significant news with now knowing you have Parkinson's disease, sounds like you are taking it as it comes. Kudos to you for already being out there researching.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like you to meet others who have talked about Parkinson's here, either in themselves or a loved one, like @hopeful33250 @ramblyn @dfelix @anna1060 @ggopher @susan62 @alistair01 @johnjames @brittalisse @pammettee @maxaz1 @numbskull @dianalee @lsdempsey @mariemarie @davidcana. They may have some input for you as a newly diagnosed Parkinson's patient from their own experiences.

What would you say is your biggest concern or question at this point, @stephenmcelroy?

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@stephenmcelroy

Hello world! I am 68 years old. I was diagnosed with Parkinson's yesterday. I have had some minor chattering of teeth for some time (several years) which has not seemed to change. My right hand has had trembling for at least 5 years and has progressed to the point where writing is nearly impossible (painstakingly difficult at best) and very problematic for mouse pad control. I use my left hand when needed but over the past month or so noticed it to was developing minor shaking. Not any real issue yet. When I run into any difficulties I pray and release my problem to God trusting in his plan for me that his will, will be done. I have been dieting and exercising relatively regularly for about 4 years. Thinking of taking up Ty Chi which I saw was recommended for Parkinson's. Had a knee replaced 2 years ago and worked hard in recovery. I tore a rotator cuff a year ago and changed exercise from weights and "gorilla training" to isometrics and passive low impact muscle exercises.

I have been politically active for about ten years working for candidates and on issues at the local, state, and some national candidates and issues. I may switch my focus somewhat from all that, in order to address much needed home maintenance before that becomes impossible for me in the future. I have not yet told my family or friends. My wife is 5 years older than I and not in as good a physical shape as she has a below the knee prosthesis which can be problematic. My 3 children and 3 grandchildren live several hundred miles away although 2 of my wife's siblings and their children live within 15 miles… theirs is not a particularly close family and my extended family is several hundred miles away.

I would expect most would be depressed from this diagnosis and I think about that and presume I have some depression but while I am not happy about it, my attitude is that "it is what it is." I love doing research and found this group during my research of Parkinson's. Exercises, stretching and some meds to manage the symptoms and quality of life seem to be what I need to concentrate on physically. I am in fairly good physical shape which is a good place to start.

Well, that is me probably giving too much information. I generally do not talk much (except for some political subjects) but I do enjoy this type of internet writing.

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Hello @stephenmcelroy and welcome to the Parkinson's discussion on Connect. While I'm sorry to hear of your diagnosis, I am happy that you found our online discussion group. My name is Teresa, and I'm the connect mentor for this group. I was diagnosed several years ago with PD but had many of the symptoms for years before the actual diagnosis. I don't have any tremors, my neurologist says that 15% of PD patients do not have tremors, so I'm in a unique group.

I'm glad to hear of your exercise program. Keeping physically active is very, very important.

Has your neurologist recommended any PD physical therapy yet? Have you started on any meds at this time?

Will you post again and let me know how you are doing?

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To @stephenmcelroy and our other PD Members on Connect.

Here is a link to a series of YouTube videos with short exercise programs for people with PD, https://www.youtube.com/results?search_query=parkinson%27s+exercise+videos. The video on hand exercises is especially good.
Also, Tai Chi is especially helpful for me, as well as PD Dance programs (done seated).
Some folks in our group have also talked about Pedaling for Parkinson's offered by YMCAs throughout the country,

Also Boxing for PD is gaining in popularity,

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@ramblyn

No, not taking Amintadine. Will look that one up. He has three carbs-leva (100 mg.) at Breakfast and Lunch. Then 2 1/2 before dinner and that is the timing I see the chattering.

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Hello @ramblyn

It has been a while since you last posted about your husband's PD diagnosis and I was thinking about you. I hope that you and your husband are doing well.

Hello @portera64

I was also wondering how your mother is doing with her PD diagnosis. Is this new disorder being managed well with meds and exercise?

If you are comfortable doing so, would you both post an update?

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@hopeful33250

To @stephenmcelroy and our other PD Members on Connect.

Here is a link to a series of YouTube videos with short exercise programs for people with PD, https://www.youtube.com/results?search_query=parkinson%27s+exercise+videos. The video on hand exercises is especially good.
Also, Tai Chi is especially helpful for me, as well as PD Dance programs (done seated).
Some folks in our group have also talked about Pedaling for Parkinson's offered by YMCAs throughout the country,

Also Boxing for PD is gaining in popularity,

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I plan to join the Tai Chi program at our Senior Center. Currently I do some low impact training for some muscle groups, and some isometrics as well as some stretching particularly for posture improvement that a past PT sessions offered.

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@lisalucier

Hi, @stephenmcelroy – welcome to Mayo Clinic Connect. Wow – yesterday – that is a very new diagnosis. Despite the significant news with now knowing you have Parkinson's disease, sounds like you are taking it as it comes. Kudos to you for already being out there researching.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like you to meet others who have talked about Parkinson's here, either in themselves or a loved one, like @hopeful33250 @ramblyn @dfelix @anna1060 @ggopher @susan62 @alistair01 @johnjames @brittalisse @pammettee @maxaz1 @numbskull @dianalee @lsdempsey @mariemarie @davidcana. They may have some input for you as a newly diagnosed Parkinson's patient from their own experiences.

What would you say is your biggest concern or question at this point, @stephenmcelroy?

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My biggest concern is how and when to tell my wife and other family and friend about this. I attend a small church and told my church family and asked to be in their prayers. I will be talking to my pastor this week one on one to get a perspective on informing all. Any advice would be greatly appreciated.

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Each person is different, but my advice is the sooner the better and be prepared for people to give you suggestions and tips and stories about others with Parkinson's. They want to help…at least that is my opinion. Don't take offense. My son who is in his 60's has it, but he doesn't seem to want to get involved with a group and seems to want to do it all himself. I think that is a mistake, but I have to respect his wishes. Perhaps I would feel the same way….My best to you.

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