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Rolling with It

Caregiving looks different when both partners have disabling conditions.

When Linda Matthews started having trouble standing up out of a chair, she wasn’t surprised. She was 70 years old, about the same age as her mother when she was diagnosed with inclusion body myositis (IBM).

“I was her caretaker, so I knew all about IBM,” Linda says. “As soon as I started showing symptoms, I went to my doctor and I said I’ve got IBM. They did the muscle biopsy and the bloodwork and the EMG. Within a week, it was definitely diagnosed.”

Often when someone is diagnosed with a disabling condition like IBM, they rely on their partner or a family member to care for them as the tasks of daily living become more difficult to manage alone. Linda, however, was already serving as caregiver for her husband Bill, who had been recently diagnosed with a different rare, autoimmune muscle disease: myasthenia gravis (MG).

In March of 2012, Bill had heart bypass surgery. About a month or so later during a routine eye exam, his ophthalmologist noticed his eyes looked a bit droopy. Linda’s brother, who had a friend with MG suggested he see a neurologist. When he did, it didn’t take long for the diagnosis to be confirmed. Bill says his neurologist thought it was the surgery that set it off.

Despite their disabling diagnoses, the Matthews do not despair. In fact, sharing similar diseases makes them more sensitive to each other’s needs. They have many of the same symptoms—muscle weakness, fatigue, mobility challenges—so they each understand, for example, when the other says they need to rest.

“Nothing is as important as getting the rest you need and taking care of yourself,” Linda says. “And it’s good that I know he’s got my back. I can say, ‘No, not right now,’ and I don’t have to justify it.”

“Sometimes you can tell when the care partner doesn’t understand that,” says Bill of other couples they’ve met. “And you can see how difficult it makes it for the person who’s got the disease. In a way, it’s to our advantage that we understand firsthand what the disease is doing to each other. We don’t have to have that fight.”

Having her mother pave the way for her has also made Linda’s journey just a bit easier. She knows what to expect, and she can plan accordingly as her muscle weakness progresses.

When she saw a Hoyer lift at an estate sale, for example, she scooped it up, knowing that one day it may come in handy if she starts having trouble moving from the bed to the chair. She has a motorized wheelchair that somebody gave her. It’s parked in the garage, though, since she still gets around fine with a rollator. The couple also recently traded their car for a wheelchair accessible van.

When they downsized their home earlier this year, Linda and Bill moved to a one-story (stairs had become a challenge) duplex next to their daughter’s family. Before they moved in, they remodeled the house to accommodate their future needs, adding a roll-in shower, raised toilets, grab bars in the bathroom, and wider doors that will accommodate a wheelchair.

The one thing that couldn’t be retrofitted for accessibility, though, was the kitchen. But Linda just winks and says, “Maybe by then I’ll teach Bill to cook, because I’m the one in the wheelchair.”

That’s not a problem for Bill. “We’ve been married for 56 years. We know how it’s done,” he says.

Linda and Bill feel very lucky to have the support of their family. They love living next to their daughter, son-in-law, and nine-year-old grandson and call on them when they need a hand. When they want to give their son-in-law a break—like when Bill needed to get to the hospital recently for cataract surgery—one of their two sons is always willing to step in and help out too.

Being part of a patient support community helps the couple in other ways. They belong to MG Texas, an MG support group in the Dallas/Fort Worth area. And they are active in Northeast Texas support group of The Myositis Association as well as on Facebook forums through Myositis Support and Understanding.

Getting together with others who share their disease helps Linda and Bill learn the medical ins and outs of both diseases, so they are better able to care for themselves and each other. It also gives them access to a whole pool of practical information that’s not readily available elsewhere: things like who is the best neurologist in a certain area, or tips and tricks people have used for managing certain challenges.

“The myositis Facebook site is wonderful, because people ask questions, and a lot of times it’s a question I have too,” Linda says. “And then in the MG group, we love it when we are able to go to the meetings. They’re always interesting, with new speakers and new ideas. It’s also nice getting to know other members who are in the same situation as we are.”

While living with conditions they know can cause significant health concerns, Linda and Bill remain upbeat.

“My mother was a wonderful example for me how to live my life with this disease,” Linda says. “You just roll with it and try to figure out another way of accomplishing your tasks.”

10 replies on “Rolling with It”

GREAT STORY…WE ARE MOVING TO TEXAS IF I CAN FIND A BUILDER THAT IS OUR PRICE RANGE. LOOKING FOR THE SHOWER WITH ROLL IN WHEELCHAIR WHEN NEEDED. I WILL HAVE INSTALLED THE WALK IN TUB, WIDEN DOORWAYS, A RAMP INTO OUR HOME AND SOME MEANS TO JUST WALK OR ROLL UNTO YOUR LARGE TEXAS PATIO…LIFE IS SHORT, SO DEAL WITH IT EVEN IF YOU HAVE TO ROB YOUR CHILDREN INHERENT. BILLY THE KID WHERE ARE YOU..lol…

I was very grateful to get this better insight into my first cousin’s life with his wife, their situation and their cooperative solutions to shared challenges. Same name, another mother, Bill Matthews

My husband had Parkinson’s for many years. I just happened to be an RN so together we learned and adapted as he progressed. Then I was diagnosed with CIDP ! We also shared many of the neuro symptoms and adjusted as necessary. I took care of him at home with help from my sister the last 2 years. I am thankful for all the crazy memories!

Hi Katherine! So glad you have those crazy memories. Also glad that you are still rolling with it. Great to see you here.

Thank you. I am 70 and was dx with MG in November and for 5 months I couldn’t do much of anything. I had two hospitalizations. My wife has had to take up a lot of the life bato, but she also has a healthy issue Idilpathic Intercranial Hypertension. There is no actual treatment. She gets tired but also headaches, light bothers her, etc. I am getting better, but as you know there is no ” like it used to be”. Then you throw in COVID…well. God bless you both

Tony, We are sorry to hear of the challenges you and your wife live with. Yes, there is no “like it used to be.” Hang in there, and let us know if we can help.

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