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

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.

@tony42miles

I can certainly understand what you and your husband went through. The altered mental state was my new reality. I thought I was in prison with a death sentence. I was so scared. The meds are so powerful that they can create this. I bow to the people who helped me through. My son spoke with me on the phone while they were giving me the new drug. The nurse was calling me her friend and holding my hand. A very humbling experience. Only minutes before I was searching my room for hidden cameras. Anyway I am mostly back in the real world again. Thank you for sharing

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We found Nuplazid vis the Michael J Fox website. It has been a Godsend for him. No more hallucinations. . . but he does miss his black dog 🤷‍♀️

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@jbug25

Fire dept is AWESOME.

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My son is a Fireman/ EMT. He works volunteer with the Fire Dept.in his state EMS is separate from the Fire Dept. He used to be a pastor . He was not getting paid enough to live on. He went back to school and stayed with us until he landed a job. EMS here is able to do more and of course he was not able to get a job with the FD here. He went to TN. 8 yrs. He truly is a county boy.

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@sillyblone

I used to live in Va. We have used the Fire Dept. several times. They even know where he sits or where the bedroom is. Lift assist helps . Mine is 73 1/2 ..We have 4 fire stations near us. We usually are able to get the one closest to us. The last time they came he spent the weekend in the hospital.

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Fire dept is AWESOME.

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@jbug25

Sometimes my husband falls as he is so weak using his walker. I have to stand with him as he walks. When he falls i call our local fire dept and ask them to give him a "lift". It is free wher i live in NC. The fire dept is very understanding. Also, we were rushed out of hospital after second trip to emergency room in same day. My husband was weak with covid and they would not test him until second trip and 5 hours later. We got home late in night as they wouldnt admit him to hospital. I was so exhausted and we got home and he fell for second time and fire dept came and placed him in bed..My husband is 74 years old. So keep in mind the fire dept when your loved one cant get up from the floor. Kind regards

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I used to live in Va. We have used the Fire Dept. several times. They even know where he sits or where the bedroom is. Lift assist helps . Mine is 73 1/2 ..We have 4 fire stations near us. We usually are able to get the one closest to us. The last time they came he spent the weekend in the hospital.

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@tntredhead

My husband has only started with the incontinence issue and I am nearly at my wits end - both mentally and physically.  Im not sure if this is from the Parkinsons or the dementia but I am now wondering if I should have left him in the assisted living facility.  Not sure how long I can keep this up with about 2 hours sleep each night. Last night was the worse night so far so I am feeling a little sorry for myself this am I guess.The Redhead

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My heart goes out to you. I have some mixed feelings myself because my husband has the next level of what we have been told of having a neurogenic bladder due to probably parkinsons. I dont have wet diapers to change but i have to take care of a urinary drainage bag from his new implemented supra pubic catheter. Not sure which is best, changing diapers or facing a urinary catheter. Fyi, my husband started puddling around toilet and i thought he was missing toilet. In hindsight, he was retaining urine and when he thought he eliminated, his bladder was full of urine and he couldnt feel urge to urinate. I think his bladder was spilling out overflow when he puddled. This was uncovered when i suspected uti and he was referred to a urologist. If you have any suspected uti, i suggest consult with urologist.

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@sillyblone

My husband had back surgery last year. The year before Covid. He has a potential heart problem due to Covid. I was appalled at the Healthcare system. Empathy is not the same. My husband was scared and I could not believe how some of the staff were laughing at him. They kicked him out of the hospital a little over 24 hrs. of his surgery. He had an altered mental status. But Utilasation Review decided he could go home. The physician wanted him to stay longer. So because of the medical decision they made he did not qualify for inpt. rehab. That night it took me 2.5 hrs. to get him of the floor. He did not fall. He was so confused.I had to reduce his pain medication in half. His back is fine now. He has cancer. It seems everytime we go to the Dr. they give him a new diagnosis. The ER usually keeps u for at least 27-30 hrs. before a bed opens. Crazy world we live in. Be careful as people with Parkinsons do not do well with medications. I could tell you more but I think it is hard for you and your family when they see you suffer.

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Sometimes my husband falls as he is so weak using his walker. I have to stand with him as he walks. When he falls i call our local fire dept and ask them to give him a "lift". It is free wher i live in NC. The fire dept is very understanding. Also, we were rushed out of hospital after second trip to emergency room in same day. My husband was weak with covid and they would not test him until second trip and 5 hours later. We got home late in night as they wouldnt admit him to hospital. I was so exhausted and we got home and he fell for second time and fire dept came and placed him in bed..My husband is 74 years old. So keep in mind the fire dept when your loved one cant get up from the floor. Kind regards

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@hopeful33250

That is great that you have found exercises that can be done seated, @tony42miles. Exercise is so very important. I am not familiar with indoor bowls. Can you explain this?

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Hi, yes we have a large carpet pulled tight over the floor. Then we generally use 3 bowls each. they vary in size and weight to suit the user. Also there is a smaller ball called a jack, this is thrown to the other end of the rink. Then players take it in turn to launch their three bowls. You win the end if you are closest to the jack. The bowls are biased so they curve as they slow down. At our club able bodied people may have a disabled wheelchair user on their team. I use an adapted electric wheelchair as I cannot stand up still enough to be able to bowl. I also use a pusher to launch the bowl as I don't have the strength to lift up and throw the bowl any more. A game takes about 2 hours

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@tony42miles

Hi, so I am a newbie to this group. I was officially diagnose in 2017. Since then I have been trying many exercise programs. For me most of those have been seated as I use a wheel chair a lot of the time due to a chronic spinal problem. So what worked for me. Seated Tai Chi was great, very relaxing and really good slow moving exercise. If you are able to stand try table tennis, great therappy. Use a childs fishing net on a pole to pick up the ball. My current exercise is wheelchair indoor bowls and hydrotherapy.

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That is great that you have found exercises that can be done seated, @tony42miles. Exercise is so very important. I am not familiar with indoor bowls. Can you explain this?

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Hi, so I am a newbie to this group. I was officially diagnose in 2017. Since then I have been trying many exercise programs. For me most of those have been seated as I use a wheel chair a lot of the time due to a chronic spinal problem. So what worked for me. Seated Tai Chi was great, very relaxing and really good slow moving exercise. If you are able to stand try table tennis, great therappy. Use a childs fishing net on a pole to pick up the ball. My current exercise is wheelchair indoor bowls and hydrotherapy.

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Yes. Parkinsons.org is acting help.

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