August 14, 2020
My husband was diagnosed about a month ago. I feel very alone as I have no one to talk to as a caregiver. His Neurologist said he must drink 60 oz of water daily, cut back on coffee to 5 cups daily and move around a bit daily. He doesn’t do these and when I mention it he tells me to leave him alone. Any suggestions?
August 19, 2020
Hello Lisasal - Thank you so much for posting and sharing your story. You've found a community here at ParkinsonsDisease.net that is comprised of people who listen and work to help one another for those living with Parkinson's and those who care for someone with Parkinson's. There are many caregivers who participate regularly on this website and on the ParkinsonDisease.net Facebook page. I would encourage you to search for a caregiver's support group in your local community, too. I know that may be hard during these challenging times but if you can connect with caregivers near you, you will find that the participants in these groups can be informative, encouraging and provide you a place to share.
Staying hydrated is very important people with Parkinson's: drinking water with their medication doses, keeps the digestive system moving well, and keep the brain working well. So, these may be the reasons that the neurologist stressed your husband stay well hydrated.
Exercise is very important for those living with Parkinson's. In recent years, the value of exercise in Parkinson's has been well researched and the benefits are huge. My husband has had Parkinson's for over 30 years and it took him 27 of those years to find Rock Steady boxing, an exercise he truly loves. His workouts have provided him confidence, better balance, and a purpose to keep himself active. If you husband can find an exercise he likes to do, it can provide him great benefits! You may even consider looking into an exercise that you might both enjoy.
Providing encouragement to your husband to try adopting these new approaches is probably one of the hardest roles for a caregiver or carepartner. My approach is to talk to my husband about these issues at a time when I'm not actively telling him to give them a try. I've found it is sometimes better to raise the issue when we are both in a good mood and the day is going well. It may just be finding a good time and when you are both in a place to talk about the issues without pressure and with lots of encouragement.
Please continue to share your story here and I hope that you find some support that benefits you too.
All my best,
Carepartner and ParkinsonDisease.net Community Team Member
December 24, 2020
I had to let my husband find his own way. He had a number of pre-existing conditions prior to PD so adding this treatment was overwhelming to him for a while. One thing that helped us was me accompanying him to Doctor visits to keep his answers honest about what he was doing or not doing, and letting the doctors give the talk and lectures. While he can still make his own care decisions it's important to do that. However, both of his neurologists were very clear. If he would not follow instructions then he is wasting their time and they could see other patients who were serious about their care. He's now on board. He has participated in a 'singing with PD' study group and requested inhome PT. Both things I did not think we'd get to under his own admonition. Try to be patient and keep the doctors updated.