How To Get Through Days When You Can't Fight Parkinson's Anymore
We have all been there. After a bad night you give up and drag yourself out of bed. It’s 4:30am. Yes, 4:30! You are restless and you just have to get out of bed. You know you should exercise, but that is the last thing you feel like doing. You stay in your nighttime pajamas because you just don't feel like getting dressed.
You try to read, but you would rather play games on your phone. Ok, maybe it will put you to sleep, but 2 hours later you haven’t moved from the sofa and you still haven’t won that game. Ugh. And it's only 6:30am! You have the whole day ahead of you but the fight is gone. You just can’t get up and get moving.
Finding motivation with Parkinson's
I saw this posted on a Parkinson’s FB page a few days ago:
“How do I keep going with this Parkinson’s. I know there are many more serious symptoms than what I have. I’m so tired of being tired. I’m so tired of withholding back tears every day. I’m tired of my body hurting. I’m tired of pushing myself every step of the way. I’m tired of pretending to my family that I’m alright when I’m not. This won’t get any better but I’m not sure I can fight it”
My response: "Take one day at a time and do something you like to do, even if it is for 5 minutes. Turn on the music loud and dance, sing as loud as you can.
Get up and move. Maybe 10 minutes tomorrow. Walk to the corner. Then around the block. You don’t have to run marathons but set reasonable goals and you may just feel better.
Find a Parkinson's buddy who can help you get through this. Yes, PD is not fun and it’s ok to stay in bed sometimes, just make sure it is not all the time. Sending hugs."
Where do you begin?
Yes, start small. American Ninja Warrior, Jimmy Choi, could barely move 5 years after his diagnosis with PD. After a fall that was his wake-up call, Jimmy started out by walking to the corner and back. Each day he added a little more. Eventually he was running 5K races, 10K races, and eventually marathons. He took it slowly, building up strength so that he could move better. And he felt better, too. A lot better. So much so that he made it to the finals of American Ninja Warrior more than once.
The key to all of this is finding something you like to do. If you like to dance, then do it! Put on the music and just move for 5 minutes. 10 minutes the next day. You can do it in the privacy of your home, where you can be as goofy as you want.
Finding a support system
If singing is your thing, there are singing groups for PD that you can join. Once you become part of the group, it becomes part of your support system. There are many exercise programs for people with Parkinson's that you can try. Don't like one? Try another type of exercise. There are so many to choose from: boxing, PWR!, yoga, dancing, tai chi, qi gong.
Find a Parkinson's buddy who you can share your concerns with. They understand you because they have been there and can make you accountable, making sure that you are exercising, eating right, and taking your medications on time. Where can you find this person? Perhaps it is someone who is in your exercise class. Look for one of the many Peer to Peer programs started by different Parkinson's organizations because they have seen how valuable it is to have someone to speak to who also has Parkinson's.
Get out & go!
The bottom line is that you have to make an effort to get out of this downward spiral. The more you move, the better you will feel.
You can stay in bed occasionally and do nothing but eat chocolates all day while watching your favorite TV show. Just don't make it a habit.
I cannot say it any better than Linda K Olson, a motivational speaker with Parkinson's, who is also a triple amputee, whose mantra is "get out and go". For your sake, and for your family, just get out and go!
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?