By Mike Bradbury
Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good advice for anyone, even if you don’t live with a chronic health condition.]
1. Do your chores. As best you can, continue your normal routine, doing the things you love or need to do as long as possible.
2. Exercise, exercise, exercise. Without compromising safety, work out with light weights, ride a stationary bike, take a daily walk, or swim. The important thing is to get into a routine so you don’t skip or forget.
3. Keep your brain engaged! Read a good book, stay involved in your business or job, take a class.
4. Stay involved socially. Stay connected with family, friends, and neighbors. Join a club or group or volunteer with your favorite charity.
5. Keep exploring. Check off some of those places on your bucket list. Take a cruise. Tour your own town.
6. Focus on the positive. The world looks brighter, and you’ll feel better. Besides, your friends and family don’t need to hear about all your aches and pains.
7. Spread awareness. Write an occasional article for the local newspaper about your disease. (Most have never heard of it.) Who knows? It may help someone who is suffering.
8. Keep a journal. Write about your daily condition, attitude, and mental/emotional status. It’s amazing how helpful thinking and writing like this can be. It makes you focus on what needs to be done and where you can make improvements.
9. Help others understand. Explain to your family and closest friends how the disease affects you, so they better understand your needs and behavior.
10. Never, ever, ever, give up!
Mike Bradbury is a retired attorney living in California.
This article first appeared in the Winter 2023 issue of TMA’s The Outlook magazine.
What may seem obvious is that doing those simple daily chores is your only hope.
I believe to many doctors do not understand the profound difference self directed therapy can make and send their patients home with little hope of maintaining mobility.
12 years since diagnosis and I am doing well .
Thanks for reminding me why.
Mike, thank you for these wonderful tips we so often take for granted. I’d suggest printing these tips and post them in your bathroom or on refrigerator so you are reminded every day. We all can do these things!
I agree with you I am doing what you’re doing and that’s why the disease is progressing slowly and you are mostly right. Exercise exercise exercise keep moving. Keep moving keep moving but also when you need the rest, you gotta do it. Thank you again.
Thank you . All good advice and very important . I would remind patients also to take note of # 2 exercise “without compromising safety “.
I have been living with IBM since 2011 and am now totally dependent on lifts and mobility chairs. Like some others I know, I did not want to give up or admit that there were things I couldn’t do and devices I needed . Only after a concussion and then a broken arm did I understand what my therapists told me. “ When the risk outweighs the benefits, it’s time to rethink your approach “. I still have therapy and exercise but it’s done in my mobility chair and still important.
Thanks again for the tips
Hi Mike,
Yes that about sums up my day!!!. I did spend 2 months in Italy and found the daily routine difficult in cold weather and did suffer minor set-backs with my muscles.
One of the main and difficult thing is to accept the physical limitations. Once new paradigm is understood accepted things workout well
Ciao
Nanda