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?

@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.

Jump to this post

Hi Beverly,

The first thing, of course, is a good diagnosis. I saw various doctors for years with one symptom or another before a new PA diagnosed me and sent me along to Neuro for confirmation. While the diagnosis was scary, it was nice to tie up all the loose ends

into one thing I could understand and that could be treated. Theresa can help walk you through that part. The rest of us will be around to put in our 2 cents worth about our experiences. 

Steve  

REPLY
@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.

Jump to this post

@ggopher Hello Steve,

Thanks for your post to Beverly, @beverlyann. Yes there are often many pieces that need to be put together in order to have a DX of Parkinson’s. I appreciate that insight.

Teresa

REPLY
@cindylb

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.

Jump to this post

Am just curious if your husband has been seen by team of Doctors at Mayo Clinic?

REPLY
@cindylb

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.

Jump to this post

Hello! No we live in Colorado and don’t have access to the Mayo Clinic. I discovered this support service online and love the sharing and information.

REPLY
@cindylb

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.

Jump to this post

@cindylb

Are you aware that there is a Mayo Clinic in Arizona? Perhaps that would be more convenient for you. Often, once you have a consultation at Mayo, they can work with your doctor in your area and you wouldn’t have to travel all the time.

Teresa

REPLY
@cindylb

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.

Jump to this post

Thank you! We will consider that. We’re still testing and if nothing comes of that we may have to travel or work outside our HMO to get more answers. Unfortunately, finances are a major concern as well.

REPLY
@cindylb

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.

Jump to this post

@cindylb

Here is some information about billing and insurances at Mayo Clinic as well as appointment information for the Arizona facility.
https://www.mayoclinic.org/patient-visitor-guide/arizona/appointments
If you would like to find out more about insurance at Mayo Clinic, please call
Patient Account Services at 800-660-4582.
This webpage http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance provides information on insurance at Mayo Clinic which includes:

Insurance types
Approval from insurers
Guidance for denied claims
International patients
Uninsured (self-pay) or underinsured patients
Insurance FAQs
Glossary of billing and insurance terms
Contact numbers and online form

Let us know if we can be of further assistance to you.

Teresa

Liked by Jamie Olson, cindylb

REPLY
@cindylb

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.

Jump to this post

That is great to know. Have been wanting my dad to take Mom to Mayo in AZ but didn’t know how that worked when live so far away. It is about a 10-11 hour drive for my parents. I think of the tv show “House” when I think of Mayo. I just think it would be so worth going but is very hard on my mom with the drive. She has had every test under the sun to always come back normal. Good to know they work with local Providers though. This group has really helped which I share it all with my sisters.

REPLY
@cindylb

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.

Jump to this post

Thank you so much Teresa!!

REPLY
@cindylb

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.

Jump to this post

Have you ever heard of a person with Parkinson’s having hand tremors that come and go, like can go 3-5 days with no tremors but then one day have them all day but can lay down in bed and they stop.

REPLY

Hello @beverlyann

That is a good question. Yes, I have heard that tremors can come and go. Here is a link to an article from WebMD about tremors, https://www.webmd.com/parkinsons-disease/tc/parkinsons-disease-symptoms#1. If you read the article it will mention that when a person sleeps and they are relaxed that the tremor will often go away. I suppose stress and fatigue may be a factor. I know that when I am tired my symptoms are worse (even though tremor is not a big problem for me).

Teresa

REPLY

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

REPLY

Hello @beverlyann

While I don’t have answers to all your questions, why not give Mayo Clinic a call and ask them these questions. I’m sure they would be pleased to talk with you. Here is the information about getting an appointment at one of their facilities: https://www.mayoclinic.org/patient-visitor-guide/arizona/appointments

If you would like to find out more about insurance at Mayo Clinic, please call Patient Account Services at 800-660-4582.
This webpage http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance provides information on insurance at Mayo Clinic which includes:

Insurance types; Approval from insurers; Guidance for denied claims; International patients; Uninsured (self-pay) or underinsured patients
Insurance FAQs; Glossary of billing and insurance terms; Contact numbers and online form

Keep in touch and let us know how you are doing, Beverly.

Teresa

REPLY
@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

Jump to this post

Hi Beverly,
Were you able to call Mayo Clinic and get answers to your questions about scheduling etc?
Mayo Clinic specialists collaborate with experts in neurology and other departments to provide coordinated and integrated, multidisciplinary care to people with Parkinson’s. Usually, it works like this. Before you go to Mayo, they will gather the patient’s medical history, tests results and records in as far as that is possible. According to all the information gathered, they will schedule initial consults and, additional testing if necessary. As more information is gathered, additional appointments with specialists and related departments may be made if warranted.
If you call Mayo Clinic, the campus of your preference, they can give you specifics.
When planning your visit you may also wish to make use of the Concierge Travel Services (free of charge) https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

I also encourage you to read through some of the experiences other Mayo patients have shared in the Visiting Mayo Clinic group here on Connect: http://mayocl.in/2bGLTKj

REPLY
@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

Jump to this post

Thanks so much for all your info and guidance!! I will read on this tonight when I get home!!

REPLY
Please login or register to post a reply.