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?

@melmaury

Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia–that went on for many months!!!
It’s difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety — as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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Hi, Sandy– terribly sorry to hear about your husband. My deepest condolences.

You are now unsubscribed.

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@melmaury

Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia–that went on for many months!!!
It’s difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety — as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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Hello @melmaury and welcome to Mayo Connect. My name is Teresa, and I’m a volunteer mentor with Connect and also diagnosed with Parkinson’s Disease (PD). I would first applaud you for advocating for your husband and seeking out help for him. He is fortunate to have you on his side!

How unfortunate that you had such a long time before you reached a diagnosis of PD, but that is often the case. You mention anxiety as his main symptom, but I’m wondering what other symptoms led to his diagnosis of PD? For example, were there also gait problems, like foot dragging when he would walk, or balance problems? Any tremors?

While carbidopa/levodopa is the traditional medicine to try for PD, there are others available as well. Is your husband seeing a general neurologist or a movement disorder specialist? A movement disorder specialist is a neurologist who has special training in neurological disorders that include PD.

I’m sure that you have done a lot of reading and research regarding PD and your husband’s symptoms, but I’d like to draw your attention to some links where you can learn a little more. Since you mentioned insomnia, here is a lecture from U of Michigan about sleep problems and PD,

.

Here is a link to a pdf copy of a book about mood and PD, http://www.parkinson.org/pd-library/books/Mood-A-Mind-Guide-to-Parkinsons-Disease.

Connect is a great place to receive support, encouragement and information. I look forward to hearing from you again.

Teresa

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God bless your family.

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Hello All: @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @pjsammy @techi @bobbieingeorgia @gulfer @mojo1965 @brittalisse @ruby7dnj @brittalisse @moso @retairforceman @elizabethbryant @meggotty @ruby7dnj @lsdemspey @oronogo @melmaury @mariemarie

I just received this email from the National Parkinson's Foundation with information about non-motor symptoms of PD and I thought that you would all find it interesting.

Here is the link to the article, http://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms. Most people would not think of these symptoms as being related to PD and they are certainly not visible as tremors are, but very real to those of us who deal with them.

I'm sure we can all relate to many of them.

Teresa

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@hopeful33250

Hello All: @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @pjsammy @techi @bobbieingeorgia @gulfer @mojo1965 @brittalisse @ruby7dnj @brittalisse @moso @retairforceman @elizabethbryant @meggotty @ruby7dnj @lsdemspey @oronogo @melmaury @mariemarie

I just received this email from the National Parkinson's Foundation with information about non-motor symptoms of PD and I thought that you would all find it interesting.

Here is the link to the article, http://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms. Most people would not think of these symptoms as being related to PD and they are certainly not visible as tremors are, but very real to those of us who deal with them.

I'm sure we can all relate to many of them.

Teresa

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Thank you Teresa for posting an excellent article.

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@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?

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I just got my book in today, can’t wait to read it!!Thanks for the suggestion.

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Hi my name is Patty. i am 69yrs young. i was diagnosed with Parkinson's Disease 3 yrs ago. The tremor isn't my issue the stiffness and restless ness is very much an issue for me,

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Hi everyone,
We just launched a new feature on Connect called Member Spotlights (https://connect.mayoclinic.org/newsfeed-post/connect-member-spotlights-shining-a-light-on-community-members/).

I think the members of the Parkinson's Disease group will be particularly interested to read today's member spotlight about Teresa, someone each of you have CONNECTed with.

– Meet @hopeful33250: Striving so No One Feels Alone with Personal Health Challenges https://connect.mayoclinic.org/newsfeed-post/meet-hopeful33250-striving-so-no-one-ever-feels-alone-in-their-personal-health-challenges/

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@pattywelch

Hi my name is Patty. i am 69yrs young. i was diagnosed with Parkinson's Disease 3 yrs ago. The tremor isn't my issue the stiffness and restless ness is very much an issue for me,

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@pattywelch Hello Patty and welcome to the Parkinson's discussion at Connect. We are glad that you have joined us.

While, I'm not a medical professional, I have had a PD diagnosis and I know what you mean by restlessness. The term for this is "inner tremor." Here is some information about it, http://parkinsonhope.org/ask-doctor/tremors-inside-his-body/.

I have been part of many PD support groups and while the outer tremors are most common, I find that occasionally someone else will talk of the inner tremor or that feeling of restlessness that you speak of.

Regarding the stiffness, most of us in this discussion group feel the exercise is the only way to combat this. There are many good exercise programs for PD. I am part of an PD Dance Class (all done seated), also Tai-Chi is highly recommended for range of motion, some people like yoga (not a personal favorite of mine). Connecting with a good physical therapist who has experience with PD patients is a good way to get started. Here is a good article about exercise and Parkinson's.

http://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise

Here are some Youtube videos and may help you get started,

The important thing is to do something that you enjoy.

I would enjoy getting to know you. Please share with us as you are comfortable doing so, a bit more about your Parkinson's treatment and how you are adjusting to it.

I look forward to hearing from you again.

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@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?

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I have a question about PD. As I have started reading this great book on PD it talks about all the other things which go along with PD. My mom suffers from all them. The nausea and doesn’t want to eat, depression, anxiety , frequent uti, but insomnia seems to be the worst. The book talks about the key to treating insomnia is adjusting the levodopa cardopa. I am just curious how anyone else is treated for the insomnia?

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@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?

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My neurologist put me on 1/2 escalating to 1  0.6 mg Clonazepam at bedtime and another 12 hours later I guess to keep the blood level reasonably constant and it helps my moderate anxiety. Been a couple weeks and no particular difference though I am still on

the half tab. Hard to move forward after the NY Times article the other day. 

I have also been through the sleep test and have a mouthpiece, no CPAP required.  Later retest showed I was fine with the mouthpiece and that is not the case.

Steve  

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@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?

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Hello @beverlyann

Here is a link to a video about sleep disorders and Parkinson's. This is from a symposium on PD that was sponsored by University of Michigan,

I would like to hear from you again and know how you are doing. Will you post again?

Teresa

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@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?

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Thank you very much!! I really appreciate you!

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@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?

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Thank you! They tried that medicine but it didn’t do anything for my mom unfortunately. Thanks for your input!

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Hi, @ggopher — wondering how things are going with the Parkinson's, and also how that bucket list of yours is coming along?

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