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Moderator

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.

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nova11723 | @nova11723 | May 6 3:53am
In reply to @sillyblone "@graziellaz Yes, It seems to be a pattern. My spouse has seizures which keeps him from..." + (show)
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@graziellaz
Yes, It seems to be a pattern. My spouse has seizures which keeps him from doing some rehab.He has been using his walker more. He is able to walk freely at home. Following directions is not easy for him to understand. Since Parkininson's is a movement disorder most patients and or family members get frustrated for the fear of falling. Actually , my spouse fell on our driveway. He did not want to wait to get in the garage where the floor is flat. I think he forgets what he is able to do and what he cannot. He of course is in end stage Parkinsons. Limited things that he can or cannot do anymore has been hard for him. He tells me " I want to be normal again". I just try to keep him positive or suggest something like a movie or a puzzle, cards, etc. That does not always work. Keep a dairy of things that stick out to you and or/changes that concern you. Stay positive, which is exhausting and overwhelming at times. If you need a good cry..do so. Allow yourself to be whatever emotion you have and by all means take care of yourself..You matter too.🫂💞

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@sillyblone @graziellaz
Sorry about each of your husbands. I'm not a doctor, but I'm just checking that they have tried a medication like requip along with L/C? It helps me with motor functions every day. (Sorry if this is repetitive.)

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2 replies
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graziellaz | @graziellaz | May 6 10:23am

Thank you for your quick reply and follow up information. Wish I could keep my husband in a more positive mood but he feels that "if I can't do what I used to do, what's the point of living." Sometimes it really gets to me but thank God I have girlfriends who let me vent and don't judge me. It good to know you are here for advice too. Thank you and God bless you with the strength to go on each day.

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sillyblone | @sillyblone | May 6 3:27pm
In reply to @nova11723 "@sillyblone @graziellaz Sorry about each of your husbands. I'm not a doctor, but I'm just checking..." + (show)
Profile picture for nova11723 @nova11723

@sillyblone @graziellaz
Sorry about each of your husbands. I'm not a doctor, but I'm just checking that they have tried a medication like requip along with L/C? It helps me with motor functions every day. (Sorry if this is repetitive.)

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@nova11723
He is so drowsy with his seizure meds. He also uses Seroquel. All of this drugs are not fesible with my spouses meds. Covid messed his heart up as well. Too my diagnosises that have led to meds that take a toll on him. He still gets some benefit from Carbodopa. He has very high blood pressure and he takes to type of drugs..they make him fatiqued even with lower levels. He also has Hypothyrodism and it just tires him when that wears off. Thank you for caring and your suggestions.

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graziellaz | @graziellaz | May 7 7:49am

I think being a caregiver to my husband is probably the hardest thing I've ever done, mostly because he fights me for everything. But God has given me the strength to get through 3 years of this so far. I get very little support from my kids since they have young kids of their own, who are involved in everything you can imagine. Thank God for girlfriends will let me vent would help judgment as many of them have been through similar things. I wish you all peace and knowing that you're doing your best and God's blessings to get you through day by day.❤️

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1 reply
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Mentor
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)
Profile picture for graziellaz @graziellaz

I think being a caregiver to my husband is probably the hardest thing I've ever done, mostly because he fights me for everything. But God has given me the strength to get through 3 years of this so far. I get very little support from my kids since they have young kids of their own, who are involved in everything you can imagine. Thank God for girlfriends will let me vent would help judgment as many of them have been through similar things. I wish you all peace and knowing that you're doing your best and God's blessings to get you through day by day.❤️

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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.

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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)
Profile picture for nova11723 @nova11723

@sillyblone @graziellaz
Sorry about each of your husbands. I'm not a doctor, but I'm just checking that they have tried a medication like requip along with L/C? It helps me with motor functions every day. (Sorry if this is repetitive.)

Jump to this post

@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.

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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..

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jatonlouise | @jatonlouise | 5 hours ago

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.;-)

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