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

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.

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》

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.

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????

Hi Susanarch

Does the boxing program help?

He is taking carbidopa-levodopa. He has heart concerns, so he has meds for that. He is enrolled in a boxing program for PD. He also has cardiac rehab PT. He hasn't attended either in a couple of weeks due to weakness. He's going to try the PD PT on Friday. We'll see how that goes.

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????

Hello @tony42miles and welcome to the PD support group on Mayo Connect. I see that @sillyblone has already replied to many of your posts and has offered some personal experience about her husband's PD. Hospital experiences for PD patients require a lot of diligence on the part of the patient, and if the patient is not able to be diligent (especially after surgery) you need to have a caregiver by your side to be sure that your needs for medications and movement are being addressed.

Here are some important guidelines, from the Parkinson's Foundation, for hospitalization if you have PD:
https://www.parkinson.org/resources-support/hospital-safety-guide
You can order the safety guide or download it for future reference. Getting your medications on time is very important. Also, being up and moving is necessary to deal with the stiffness that can occur during hospitalizations.

How are you doing now, Tony? What are the most difficult symptoms you are dealing with?

Hello @lyndavdp and @susanarch, and welcome to the PD support group on Mayo Connect. I can understand your need for information and support as you are dealing with a PD diagnosis.

First, @lyndavdp, there are great physical therapies for Parkinson's. I recommend you ask your doctor for a referral to a physical therapist who specializes in PD. There is a great program, Big and Loud (https://www.lsvtglobal.com/LSVTBIG), which addresses the movement and the voice problems associated with a Parkinson's diagnosis. Exercise, along with medication, is important to delay disability associated with PD. Have you been prescribed medication? If so, is it helping with your symptoms?

@susanarch, I'm so glad you are helping your husband with this new health challenge. Learning all you can is important. Has your husband begun medication yet? What about physical therapy?

To you both, I recommend that you check out the Davis Phinney Foundation website. They have lots of videos where PD patients and neurologists speak on many issues related to Parkinson's. Here is a link to the website,
https://davisphinneyfoundation.org/
If you go to the website, you will find numerous resources for patients and videos of webinars. These can be helpful in your understanding of this neurological disorder.

When I was diagnosed, my main symptoms were a gait disorder (when I was tired, I couldn't walk straight, but veered to the right side). I also had balance problems and a very soft voice. What symptoms led you to see a neurologist?