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?

@cindylb

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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@cindylb

How frustrating this must be for you both. I’m sure that these symptoms are uncomfortable. I suppose your husband has been checked for blood pressure and cardiovascular problems? Have you sought a second opinion for your husband’s symptoms?

Here is a link to a website that lists all of the Centers of Excellence for Parkinson’s treatment, https://www.ninds.nih.gov/Current-Research/Focus-Research/Focus-Parkinsons-Disease/Udall-Centers.

If you live close to one of these centers, this might be a good way to get a second opinion regarding Parkinson’s.

Teresa

Liked by Lisa Lucier

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Yes, we’ve checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link…..

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@cindylb

Yes, we’ve checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link…..

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@cindylb

It sounds as if you have covered a lot of areas of concern, given his symptoms.

Will you keep us posted as to how your husband is doing?

Teresa

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@cindylb

Yes, we’ve checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link…..

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I will keep you posted. I read the material on the site you provided the link for and it was very insightful and helpful. I’m always looking for information to try and resolve this unknown malady (so far) that my husband is suffering.

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@cindylb

Yes, we’ve checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link…..

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@cindylb

Getting a diagnosis is the tough part of PD. It took me about 15 years. I hope your husband’s journey is a little shorter than mine.

Here is another website that you might find interesting, or at least helpful – http://www.parkinson.org/. You can get a lot of info about the different forms of PD, including many non-motor symptoms.

We will look forward to hearing from you again!

Teresa

Liked by Lisa Lucier

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Thank you once again. We appreciate all your support.

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@cindylb

Yes, we’ve checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link…..

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Dear Teresa,

Thanks so much for the website…just opened your message.  Just getting to know how Connect works. The PD community is very helpful to dystonia because so many of PD also have dystonia.

Our research foundation to the DMRF, Dystonia Medical Research Foundation where I specifically go for my problem.  However, since dystonia is a neurological movement disorder

I go to many PD meetings and learn so much and get so much hope.

Many with PD are getting better and better with all of the new research if the patient is able to do

the exercises and treatments.

Appreciate your note and apologize for not responding sooner.

Kristina in D.C.

Liked by Lisa Lucier

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Hello Kristina @101082101082

There is certainly no need to apologize for responding late. I hope that the Dystonia discussion group here at Mayo Connect is helpful to you. Please keep in touch. I would be interested in knowing how you are doing.

Teresa

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My name is Beverly and I decided to do some reading on Mayo Clinic as were grasping at straws on my mother whom hasn’t been dex with Parkinson but shakes very badly off and on. So I’m just trying to decide what our next step is because we have exhausted everyone and same test which always come out normal. She has extreme weakness and at times can’t even walk.

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@beverlyann

My name is Beverly and I decided to do some reading on Mayo Clinic as were grasping at straws on my mother whom hasn’t been dex with Parkinson but shakes very badly off and on. So I’m just trying to decide what our next step is because we have exhausted everyone and same test which always come out normal. She has extreme weakness and at times can’t even walk.

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@beverlyann Hello Beverly and welcome to Mayo Connect.

How wonderful that you are advocating for your mother. You mention that she shakes and at times can’t walk. You also mention that the same test comes out normal. If you are comfortable sharing more could you please share what test(s) she has had? Also, has she seen a movement disorder specialist (they are neuroloigists who specialize in disorders like Parkinson’s). Does your mother have other health problems that have been addressed?

Most of us went several years before we received a PD DX. It can sometimes be confused with other health disorders. Here is some information from Mayo’s website about PD, https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055. As you read this you will learn some more about this disorder.

We look forward to getting to know you better and encouraging and supporting you at this time. I would like to introduce you to some other members who have been diagnosed with PD. I’m sure they would like to welcome you as well, please meet Marie @mariemarie, Steve @ggopher and Steve @lsdemspey.

Teresa

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Beverly,
My husband is experiencing similar symptoms and has had so many tests it’s hard to even keep track now. He was put on Parkinsons meds but then taken off but we still don’t have any kind of diagnosis. I will share any insights we may uncover and will follow you here as well. I look forward to hearing from others in this group who may have experienced the same difficulties with diagnosis and treatment.

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@cindylb

Beverly,
My husband is experiencing similar symptoms and has had so many tests it’s hard to even keep track now. He was put on Parkinsons meds but then taken off but we still don’t have any kind of diagnosis. I will share any insights we may uncover and will follow you here as well. I look forward to hearing from others in this group who may have experienced the same difficulties with diagnosis and treatment.

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Thanks for adding your husband’s experience, @cindylb. I’d like to ask you and @beverlyann what other symptoms your family members have experienced. For example, are there any speech or swallowing problems, or a very soft voice? What about facial expression – is it masked (or flat) or is there expression in the faces? These symptoms are often used to help doctors diagnose PD.

Teresa

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My husband’s symptoms started about 3 years ago. He was diagnosed with COPD at that time. He is being treated for that pretty successfully. About 3 years ago he started having hand tremors, which the doctor’s diagnosed as benign essential tremor. Whatever this is (?) then started to make my husband shake more frequently…..his hands, neck, head as well. He also has fainting spells where his blood pressure drops significantly. We are in the process of multiple heart function tests. He has also had an EEG to rule out seizures, EKG and Stress Test (nothing wrong there as well). He is on Primidone now for essential tremor and was on Carb/Levo for several months, but it didn’t seem to have any impact for him. His fainting spells start with a pressure in his lungs or chest and move rapidly to his head. His chest, neck and head and hands will shake, he will get clammy skin and have to rest (sometimes for hours) to recover. He hasn’t had any of the ‘traditional’ Parkinsons symptoms such as facial mask, slurring of speech or changes in gait but he does sometimes have trouble swallowing (much more than usual) and also his voice has become softer and more hoarse. We are actively trying to help the doctors with as much information as possible to determine what might be causing this. Thanks for any input and I hope this will maybe spark some new help or thoughts for Beverly, who is working to determine the cause of her Mother’s problems as well.

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@beverlyann

My name is Beverly and I decided to do some reading on Mayo Clinic as were grasping at straws on my mother whom hasn’t been dex with Parkinson but shakes very badly off and on. So I’m just trying to decide what our next step is because we have exhausted everyone and same test which always come out normal. She has extreme weakness and at times can’t even walk.

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Welcome Beverly. A Mayo movement disorder neurologist dxd me with Mild Parkinson Syndrome a year ago. He said i didnt need meds
But must exercise. However I had tight hamstrings past few months so my local neurologist had me try Sinemet. I had stomach issues with it. So he said to stop. He suggested Neupro Patch. I’m on my 19th day. No side effects and no tight hamstrings. I do PEADLING FOR PARKINSON at fitness center. This is a great site.

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@cindylb

Noticing the swallowing problems and a softer voice are certainly worth mentioning to his doctor. Often if Sinemet (Carb/Levo) does not work on the symptoms other PD meds can be tried.

Teresa

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