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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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jtes | @jtes | Jun 28 7:05am
In reply to @edieteresa "Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after..." + (show)
Profile picture for edieteresa @edieteresa

Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after spending thousands of dollars with doctors trying to find out why I was blacking out with no warning. I had one syncope where I fell into the bathtub breaking my arm and thumb on opposite arms. All of the mris, stress and cardio test came back clear. I have no one for a support system.

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I’m so sorry you don’t have anyone to help you with this, Edie. Since my husband was diagnosed we have discovered local Parkinsons Associations that offer boxing, dancing, etc which all help with balance and have helped him meet others going through the same things. Try a general internet search and ask your neurologist for suggestions. It’s a scary diagnosis but talking to others going through it helps.

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edieteresa | @edieteresa | Jun 28 6:47am

Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after spending thousands of dollars with doctors trying to find out why I was blacking out with no warning. I had one syncope where I fell into the bathtub breaking my arm and thumb on opposite arms. All of the mris, stress and cardio test came back clear. I have no one for a support system.

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susanarch | @susanarch | Jun 27 6:25pm

My husband went today and had so much fun with his therapist with the boxing!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26 9:40am
In reply to @skyblue67 "Hi Susanarch Does the boxing program help?" + (show)
Profile picture for skyblue67 @skyblue67

Hi Susanarch

Does the boxing program help?

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Hello @skyblue67

I see that you are enquiring about the boxing for PD patients. Here is a link to the program where you can search for classes nearby. https://rocksteadyboxing.org/

I have never tried it, but I've known of PD patients who have found it helpful. Exercise is important for Parkinson's and finding an exercise program that you enjoy is important.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26 7:43am
In reply to @skyblue67 "Hello everyone I am new to this site looking for support." + (show)
Profile picture for skyblue67 @skyblue67

Hello everyone
I am new to this site looking for support.

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Hello @skyblue67, and welcome to the PD support group on Mayo Connect. I see that @sillyblone and @susanarch have already posted with you.

Please share, as you are comfortable doing so, a little about your Parkinson's experience. Are you the patient with Parkinson's or are you a caregiver? What is the most difficult problem for you currently?

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sillyblone | @sillyblone | Jun 25 2:05pm
In reply to @susanarch "Can you put a bell or chimes on the door to wake you if he starts..." + (show)
Profile picture for susanarch @susanarch

Can you put a bell or chimes on the door to wake you if he starts to go out?

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He goes out through the garage. I hear the garage door open and when he turns off security it makes a loud noise.

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susanarch | @susanarch | Jun 25 1:30pm
In reply to @sillyblone "My neighbors all know him and his condition. I get calls or someone will tell me...." + (show)
Profile picture for sillyblone @sillyblone

My neighbors all know him and his condition. I get calls or someone will tell me. I only worry about when I am sleeping. I don't sleep during the day. I worked the medical field as well. I know sundowners is not present yet.

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Can you put a bell or chimes on the door to wake you if he starts to go out?

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sillyblone | @sillyblone | Jun 25 12:33pm
In reply to @susanarch "My husband has periods of confusion, especially when waking from a nap - and he naps..." + (show)
Profile picture for susanarch @susanarch

My husband has periods of confusion, especially when waking from a nap - and he naps A LOT! He is not at the point of wandering but I understand your frustration. I worked in nursing homes for many years, and know that wandering is a very real and potentially dangerous problem. Do you have any help nearby? 《Hugs》

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My neighbors all know him and his condition. I get calls or someone will tell me. I only worry about when I am sleeping. I don't sleep during the day. I worked the medical field as well. I know sundowners is not present yet.

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1 reply
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sillyblone | @sillyblone | Jun 25 12:27pm
In reply to @skyblue67 "Hi I just read your post. I feel your frustration. All we can do is support..." + (show)
Profile picture for skyblue67 @skyblue67

Hi I just read your post. I feel your frustration. All we can do is support them and hope . I hate this disease. So hard on them and you. how long has your husband had it? If you don't mind me asking.

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He has had it since 2013.

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susanarch | @susanarch | Jun 25 10:07am
In reply to @sillyblone "I use this same program. I want to get a bracelet for him for the dx.of..." + (show)
Profile picture for sillyblone @sillyblone

I use this same program. I want to get a bracelet for him for the dx.of Parkinsons. Any ideas? I wake up every morning is he still in the house or wondering in the neighborhood. He has fallen on our driveway so many times I cannot fathom what could happen. I have a first aid kit in my car, two in the house. He takes aspirin. He has a nosebleed on one of his falls. I packed his nose and put a pressure dressing on his nose. He could breathe. I wrapped his arms because of road rash. He would not use his walker. I think differently then he does ..but he thinks he is ok. Not !I did say if you take off and I cannot find you I will call for a Silver Alert. What did he do today. Same thing. I cannot watch him 24/7. He turns off security. I guess he won't bleed if he does that!!! There really is nothing I can do. He is a grown man and he can do whatever he wants. But he cannot drive. He will never find my keys. Any suggestion????

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My husband has periods of confusion, especially when waking from a nap - and he naps A LOT! He is not at the point of wandering but I understand your frustration. I worked in nursing homes for many years, and know that wandering is a very real and potentially dangerous problem. Do you have any help nearby? 《Hugs》

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