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

Thank you, I’ll check on the voice and speech programs. It’s been a big struggle.

@sillyblone thank you! I appreciate that.

Hi Cacrouch1958 - Sorry to hear about the progression of your husbands Parkinson’s disease. It is a disease that seems to affect everyone differently. I was diagnosed in 2017 because of a tremor in one leg. I exercised faithfully until a few months ago when I developed a bad knee. Now I am facing knee replacement surgery. I don’t know how much longer I will not be able to exercise. At least I can still do my voice exercises, thank goodness. You said your husband’s voice was soft. There is a non profit organization that can help him with that, called Parkinson’s Voice Project. Did you know that the muscles you use to speak are the same as the ones you use to swallow so it is important to keep those muscles strong. I went thru their SPEAK OUT! Program and I practice the exercises almost every day and my voice remains strong. If you want to check this program out you can go to ParkinsonVoiceProgress.org and find a provider in your area. And you know the best part? There is no charge. I also have balance issues. I have been to PT for that but now with my bad knee my balance is really off. I have had to resort to using a walker but thankfully I haven’t had but a couple falls. Have you looked for a support group for caregivers? That might be helpful for you. I know how frustrating this disease for me, the patient, can be. I can imagine that you, the caregiver, is just as frustrated.

Greetings, my husband is 73 and was diagnosed with Parkinson’s 15-20 years ago. Last 3 years we have seen a progression in the symptoms. Last 3-4 months even more so. Last 6 weeks have been weekly falls and speech issues.

I’m just now becoming frustrated. We’ve been married 33 years and have never raised our voice at each other until the last 6 weeks. I felt overwhelmed and 3 times I couldn’t maintain my emotions.

Hi, my husband has had Parkinsons for 15-20 years. Last 3 years it has progressed. However the past 3-4 months there’s a noticeably progression. Weekly falls and speech is soft and using a walker. His mind is doing well and he is able to care for himself. We’ve been married 33 years and never argued or raised our voice at each other in the past; but have a few times this past 3 months. The arguments have been regarding his symptoms, not driving and him disagreeing. He is more irritable. His Parkinson’s is now affecting me.

We have a strong family support system and are moving into a gen suite attached to our son’s home soon. Our faith in Christ keeps me strong but I do get overwhelmed at times.

I still work from home part time with retirement in January of 2027. This is my first post here.

Hello Edie,
I cannot imagine not having help when you need it. I know you have been through so much already. I will be here if you need to ask any questions. My spouse has Parkinsons. 🫂

@edieteresa,

Here is a link to YouTube videos where you can find PD exercises. Exercise is an important part of PD treatment. https://www.youtube.com/results?search_query=exercises+for+PD

There is a lot you can learn about PD from the Davis Phinney Foundation. There are informative webinars. Here is a link to the website: https://davisphinneyfoundation.org/. If you click on the "Resources" tab, you will find information on medications, webinars, etc.

Hello @edieteresa, and welcome to the Parkinson's support group on Mayo Connect. It sounds as if you have had a difficult time getting a diagnosis. Many of us with Parkinson's waited for several years before we found the correct diagnosis. How are you feeling now?

Have you begun any treatment yet? I'm thinking of medication or an exercise program? If so, have the treatments been helpful?

I look forward to hearing from you again. Will you post updates as it is convenient?

Hi Edie. Here is a list of online PD support groups including the Parkinson's Buddy Network. Best of luck to you.
https://www.michaeljfox.org/news/support-groups#

I am now living in a small rural town that is 3 hours away from Houston so nothing is available unless I drive at least 3chours away