Five tips for dealing with the diagnosis of a late-onset muscle disease
Each form of muscular dystrophy is devastating in its own way. For some patients, symptoms may manifest at birth or at a young age. My situation was different.
I was already 17 when I was diagnosed with Miyoshi myopathy, which MDA classifies as a form of distal muscular dystrophy that involves weakness that begins in the lower extremities, especially in the calf muscles. It can progress to other muscles as well. Even then, I still had full muscle ability. In fact, had I not been in a car accident my senior year of high school that led to startling results on my blood work, I never would have known anything was wrong until much later.
But it has been 10 years now since that accident, and my life has changed a great deal from where I thought I’d be at 27. I have learned so much during this time, which has helped me stay afloat as I become increasingly disabled. And while I don’t regret learning most of those things through trial and error, there are at least some lessons I wish I had fully appreciated in advance.
With that thought in mind, my goal in this space is to share with you some tips that have helped me navigate my new reality. I know every person is different, and that what works for one person may not work for everyone. I also don’t pretend to know everything. So the following is simply what has helped me cope with my late-onset disease. My hope is that my perspective — with the benefit of hindsight — will offer some comfort to others struggling with a similar situation today.
In no order of importance, here is what has helped me:
1. Figure out what disability will never take away.
With a late-onset disease, you lose the ability to do many things — run, lift heavy objects, climb stairs, eventually even walk. It is impossible from time to time not to dwell on what you have lost. But my biggest regret looking back was wasting time lamenting what I was no longer able to do. Things only began to turn around for me when I took an afternoon and literally wrote a list of what I still could do:
I can love.
I can laugh.
I can make others laugh.
I can write.
I can go back to school.
I can make a difference in the lives of others.
Disability will never take any of this away from me. (What would be on your list?)
2. Find ways to reduce stress.
As you navigate this new reality, you may feel anger, frustration and depression. Your body will constantly be sore and stiff. All of this can lead to a perpetual state of stress.
One stress reliever that works for me is writing. It helps me to express my feelings and is therapeutic. Whatever helps you relax, do it! Write. Paint. Read. Do yoga. Find any activity that can make you calm, and do it as often as possible. When our mind and our body feel well, it is much easier to tackle day-to-day challenges.
3. Educate yourself.
As soon as you receive a diagnosis, register with the Muscular Dystrophy Association. Don’t worry — this is not some shameless plug on my part; MDA really is one of the best resources you can have. (To find and register with your local MDA office, visit mda.org/locate or call (800) 572-1717.)
After registering, do some research. Become an expert on your disease. Read and learn as much as you can — what your prognosis is, what is still unknown, what therapies are being investigated. Maybe there’s a foundation out there dealing with your particular disease. If so, register and ask them questions.
Finding others living with your disease also can be a major help. In addition to providing a wonderful support system, such individuals are great resources for sharing ideas, tips and knowledge. They also may become lifelong friends — and who can have enough of those?
4. Get your Ph.D. in logistics.
To make up for what you lose in going from ability to disability, you will have to become an expert at planning, time management, asking questions and making contingency plans. You will need to know if every place is accessible, where the bathroom is located (wait, your bathroom is up two flights of stairs?), and how to get from Point A to Point B in the safest way possible. I live in Boston, which is one of the toughest cities to navigate with a disability. However, even I was able to adapt to my surroundings, so I am confident that wherever you live, you can as well. There will be trial and error, no question. But it can be done. Which brings me to my final tip …
5. Don’t be afraid to ask for help!
The greatest piece of advice I can give is to learn how to ask for help. We are held back by our pride in thinking that doing so somehow makes us less independent. The truth is, it’s the other way around: Asking for help is a form of exercising our independence. The sooner you realize what you cannot do — whether it’s holding onto something heavy or getting up after a fall — the sooner you can go back to doing whatever it is you CAN do. You are not bothering someone by asking for their help. You owe it to yourself to know your limitations and to not put yourself in a position where you might get hurt.
I hope these tips are helpful. I know I’ve learned so much from all of you who share your stories, challenges and triumphs. Your perspectives were critical in helping me turn my life around. If I can help even one person come to grips with his or her disease, I will consider this article a success.
Bonus tip: We are all in this together. Never feel alone!
Christopher Anselmo, 27, is a freelance writer and MBA student living in Boston. He regularly writes about life with muscle disease on MDA’s Transitions Center blog.
Note: Feeling inspired by Chris Anselmo’s advice on managing his disease? What tips of your own would you add to his list? Let us know by commenting on this story at quest.mda.org. And, if you have a From Where I Sit story idea to pitch, let us know by emailing the Quest editors at firstname.lastname@example.org.