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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

emmit | @emmit | Jun 8 1:28pm

In reply to @boatman12 "My name is Boat4557 , I was diagnosed with PD about 1 year ago." + (show)

@boatman12
Hello. I was officially diagnosed 3 weeks ago. I have been dealing with various doctors and symptoms since last summer. I'm in early stages and my symptoms are manageable right now. lately its stiffness and soreness. need to try adding stretching exercises. Hope all is well

boatman12 | @boatman12 | Jun 8 10:50am

My name is Boat4557 , I was diagnosed with PD about 1 year ago.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 8 8:54am

In reply to @meg17 "Hi I have pd..can't still bring myself to say full word..tremors mainly but not exclusively in..." + (show)

Hello @meg17, and welcome to the PD support group on Mayo Clinic Connect. I can certainly understand your difficulty in not wanting to "say the full word." It does take time to get used to a new diagnosis, especially one like PD.

Share, as you are comfortable, a little about your history with PD. For example, how long ago were you diagnosed? What treatments, such as medications, physical or speech therapy, have you tried?

jatonlouise | @jatonlouise | Jun 8 8:03am

In reply to @southwest "@jatonlouise I bring along a five page list Word doc. of pharmacy, OTC supplements, allergies to..." + (show)

@southwest I'll bet the doctors and the nurses appreciate it.

southwest | @southwest | Jun 8 7:06am

In reply to @jatonlouise "I have so many co -morbidities that whenever I visit a new doctor, I can't gfit..." + (show)

@jatonlouise
I bring along a five page list Word doc. of pharmacy, OTC supplements, allergies to drugs, current RXs, major illnesses and procedures, immunizations.

On the kind of forms you refer to, which are absurdly set up so that in real life they cannot be filled out completely or legibly, I write "see attached" for the meds and ilnesses part, and give them my long list

jatonlouise | @jatonlouise | Jun 7 12:40pm

I have so many co -morbidities that whenever I visit a new doctor, I can't gfit them all on the form they give me to fill out as a new patient, so I just have a list of my maladies, and the meds I take (all 21 of them) a;alllt yped up because even if there were room on the form, they wouldn't be able to read m handwriting.;-)

meg17 | @meg17 | May 26 10:24am

Hi I have pd..can't still bring myself to say full word..tremors mainly but not exclusively in jaw and tongue..I have also a myriad of other health issues but on the things to be grateful side is the fact I am still fully compos mentis..won't list all my other issues here or it would be like writing an epic saga..

graziellaz | @graziellaz | May 8 9:58pm

In reply to @nova11723 "@sillyblone @graziellaz Sorry about each of your husbands. I'm not a doctor, but I'm just checking..." + (show)

@nova11723
My husband does take L/C along with roPiniRole that was started during his previous hospital stay. This hospital stay the upped the L/C and removed the roPiniRole to see if it helps.
He hasn't had requip but ei ask the neurologist about it. Thank you.

graziellaz | @graziellaz | May 8 8:28am

Thank you!

Teresa, Volunteer Mentor | @hopeful33250 | May 7 3:39pm

In reply to @graziellaz "I think being a caregiver to my husband is probably the hardest thing I've ever done,..." + (show)

Hello @graziellaz,

You might find additional support in Mayo Connect's Caregivers support group. Here is a link to those discussions. https://connect.mayoclinic.org/group/caregivers/

Here you will meet other caregivers who share the same strengths and frustrations you do.