Living with Parkinson's Disease - Meet others & come say hi

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

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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, https://www.youtube.com/watch?v=6s4A6HFkjGo&feature=youtu.be.

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

God bless your family.

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

Thank you Teresa for posting an excellent article.

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

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,

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/

@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,

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.

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?