Caregiver Searching for Excellent Info & Resources

Hello Jane,
Welcome .Your husband has alot going on. First off , I would get in touch with the local chapter for Parkinsons and request information which may be helpful with his condition. Have you asked your physician for PT or possibly Speech Therapy? What has his physicians suggested? I will help in anyway I can. My spouse has Parkinsons. Believe me when I say this has been an issue for him since 2013. 🫂 🤗

Thanks for your reply. The local social worker just sent me a few groups to reach out to you and I will after the holiday. He was doing PD PT and about to start Rock Steady Boxing but began having unexplained drops in BP so PT was stopped. He saw a cardiologist, his meds adjusted and cleared. I have asked for a private consult with his physician or someone knowledgeable in the Mayo Neurology department who might give me some insight & expectations on what to do and look for moving forward. I haven’t heard back yet. Now that I realize these behaviors are PD related I will certainly approach the anger with different tactics and responses so I’m sure that will help. It’s just dawning on me that he is starting the process of slipping away from me.

I certainly get it! It looks like you are on top of things. Lots happens as the disease goes through different stages. What I wanted you to know is ask questions and I certainly will answer. Three people in my family have had Parkinsons. They were different symptoms but same outcome. 🫂

How soon after diagnosis did each truly begin to need daily supervision? What did they each have the most trouble with earliest on?

Hi - I also have Parkinsons. I was diagnosed in 2017. My Neurologist said exercise is one of the most important things you can do for it. She referred me to Physical Therapy where I learned the LSVT Big exercises for people with Parkinsons. I did them every day until I developed a knee problem and am going to have a Jiffy TNR. But I will get back to them. Exercise also helps relieve stress. You can learn them also and do the exercises together. My husband does them with me. And I also participate in a speech therapy program called SPEAK OUT!. It is provided by Parkinson Voice Project to help someone with Parkinsons or other like Neurological Disorders to regain and retain the ability to speak and swallow. If you are interested you can check their website at ParkinsonVoiceProject.org. They have trained SLP’s all over the country and in many states they have research centers where there is no charge for this treatment. A therapist also helped me. Have you thought about that for you and/or your husband. And then there are Parkinson Support groups that can be a big help. Hope you find all the information you need to help make this journey easier for you.

Thank you for your reply. I had never heard of the speech therapy until I saw it mentioned on this site. We are willing to try and do all that will help. Honestly, I hadn’t thought of doing the exercises with him. I’m not sure why. It’s a great idea! We were going to the gym together regularly before he started the PT and having BP issues.