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

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?

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

Fire dept is AWESOME.

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.

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