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

God bless your family.

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

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

You are now unsubscribed.

PLEASE REMOVE ME FROM THE LIST.  MY HUSBAND DIED LAST WEEK FROM PARKINSONS COMPLICATIONS.  

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

Hello @johnmauney and welcome to Mayo Connect. I am Teresa, mentor for the PD discussion group and I'm glad that you joined our conversation.

I see that you are looking for information on CDB Oils. I have no personal information about that, I have only used the traditional meds that are used to treat PD along with regular exercise, physical therapy, etc. Many of our Members in this group have used Pedaling for Parkinson's Progam, it is done on a stationary bike and is very helpful for many of the symptoms you have mentioned. I'm going to tag @mariemarie who has used the Pedaling program for some time. She will probably explain the benefits.

I notice that you mention swallowing problems. Have you had any speech therapy? That was especially helpful to me for swallowing problems. I usually go for speech therapy about once per year to tune-up the swallowing process. Here is one of the discussions on swallowing and PD, https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/.

Regarding some of the problems with balance, freezing, etc, have you tried regular exercise and physical therapy? They are generally very helpful. I'm going to tag @ggopher who exercises regularly as well.

Regarding problems with insomnia, here is a video from a University of Michigan seminar on PD that deals specifically with insomnia, https://www.youtube.com/watch?v=6s4A6HFkjGo&feature=youtu.be

Freezing is a very real problem with Parkinson's. Here are some links to articles that you might find interesting as well as helpful. The first one is from the National Parkinson’s Foundation http://www.parkinson.org/understanding-parkinsons/living-well/freezing. This next article is from the Michael J. Fox Foundation https://www.michaeljfox.org/foundation/news-detail.php?tricks-to-move-through-freezing-episodes-in-parkinson-disease.

If you are comfortable sharing, could you tell what meds you are currently taking? In what way are they working (or not) for you?

I look forward to hearing from you again.

Teresa

Hello. I was diagnosed with PD nearly 4 years ago. My particular symptoms are focused mostly on my feet and legs...frozen to the ground, gate, and neuropathy in my feet. Also included are the general issues related to swallowing, balance, insomnia and constipation.

I recently heard about CDB Oils and am wondering what this group thinks about it and which of the 50-state legal forms are best.

@AgentDarien I appreciate all of the good resources you have provided.

Teresa

Hi again! Correct spelling of the PD book is Dr. Eric Ahlskog. There are about 4 foundations, organizations listed on google for you.
Also, under news it tells how Mayo/Banner in Arizona is working together. Michael J. Fox, was suffers thru PD plus Dystonia, but Dystonia is not mentioned very much it is a fact. Break thru have been made in diagnosing PD early, clinical trial are going on.
Fox's Foundation on google states it is the biggest funder for PD. Dystonia has even received grants from Michael J. Fox Foundation.

Berverlyann, it's hard when you are a "caregiver" to have the time to look up all this help, is it possible to have someone else do research on movement disorders,,,there are so many different ones, but Banner teaming up with Mayo would be a great solution because they are working together on PD in Arizona and you may find out there is a local center close to you.

But, a PCP, is not one for a Movement Disorder diagnosis, PCP may guess at it, but since os the vast kinds, neurologists are best time spent. Lots of friends of mine who were exposed to Agent Orange Viet Nam when they were in the service, has PD and Veterans
Affairs have now it listed for possible outcomes. We also, are connected with Military Traumatic Brain Injuries and subsequent
Dystonia, so we are listed under the Department of Defense has a disease that gets to compete with other disease for amount of funding for research...we have no cure, either. Beverlyann, we have lots in common! Wishing you well and HOPE!

@AgentDarien

I appreciate your encouraging words about Mayo and their help to your family!

Teresa