This Is RRMS: André Takes Life Step by Step

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Fast facts

• Name: André (DIDIMUS on Bezzy MS)
• Location: Vacaville, California
• Year diagnosed: 2020
• Bezzy member since: 2020
• Describe yourself in three words: trustworthy, benevolent, astute
• Go to healthy snack: cheese and crackers
• Person who inspires you the most: I admire my retired partners from the Department of Corrections. They are physically active, in good shape, and good people.
• Hobbies: Classic cars — I’m into going to shows and working on cars. I have a ‘66 Plymouth Valiant.
• Hidden Talent: I’m artistic with anything from painting to making a gift basket.
• Advice you’d give your younger self: Take it a day at a time, and don’t stress out. Don’t be in such a hurry.
• Song that makes you smile: “Don’t Worry Be Happy” by Bobby McFerrin
• Favorite movie or show to marathon: I love movies like “Braveheart” and “Avatar.”
• Pets: We have a chihuahua named Cooper.
• Celebrity you would love to see play you in a movie: Robert De Niro

 Q&A with André

When were you diagnosed?

Believe it or not, of all people, my dentist suggested I get a referral for an MRI. When he asked if I had dental pain, I told him every once in a while, I get this horrific shocking pain in my face that makes me jump out of a window. I can’t tolerate it, it’s horrible. I’m lucky if it only lasts for 1 second or less.

He said, “I know what that is! I’ll call you.”

When he called me, he said he talked to his colleague. He said, “I think that’s trigeminal neuralgia.” (Trigeminal neuralgia is a type of sudden face pain caused by a damaged nerve.)

I told my doctor what my dentist said, and he immediately referred me to a neurologist.

I had a full body scan, and the doctor called me in and said he needed to show me some things. He pointed out little spots on my myelin sheath in the imagery. There were probably 20.

That was my official diagnosis for having multiple sclerosis (MS). He said it looked like I’d had it for some time. I said, “That explains a lot of things.”

When you don’t know you have MS, you’ll make excuses to make sense of why you trip on air, are clumsy, or have a bit of weakness.

My thought process would be, “I must need to go back to the gym,” or “I’m out of shape,” or “I’m getting old.” You never fathom that you have multiple sclerosis. Then you think, “Oh my gosh, they can’t fix that.”

When the doctor told me, I felt overwhelmed. But I’m continuing with my day-to-day, doing things slowly, and trying not to rush anything. I’m more aware of doing things safely.

What’s a typical day like in your life like now?

These past several months have been stressful. I had a death in my family, and I had to deal with the issues related to that.

I just had a total hip replacement, and I haven’t been out of the hospital for very long. It’s a miracle the way they did the procedure, and it healed very quickly.

It’s still sore, but it’s amazing. Ever since the procedure, I’ve been able to stand and walk. Now I’m done with physical therapy, and I can walk without a walker or a cane. I don’t walk with a limp anymore, and my back and neck pain are gone.

The hip issue caused me to sit often for the past few months. It was really debilitating. I could hardly do anything, and now I can practically speed walk. I’m looking to sell my scooter!

I have a 15-year-old son and I want to be able to drive, go to his basketball games, and pick him up to spend time with him.

How do you balance everyday tasks with your MS?

I listen to my body. When I get winded or feel too tired to do something, I sit my butt down and relax. I’ll take it easy and wait until I have enough energy to do something.

Usually, the hardest part is finding the motivation. The fatigue is murder. I can’t say enough to people to explain it.

I know people can empathize, but I’ve realized that if you do not have MS or are extremely close to somebody who does, you just don’t fully understand.

What do you wish friends and family understood about your MS?

I think they understand it pretty well, but it’s hard to get people to recognize that nothing will make it go away. You have good and bad days, but MS is persistent.

The skin burn sensation is just incredible. The fatigue, too. The symptoms are not going away. I don’t care what you have to offer me, it’s not going to make it feel better. That’s how it is.

What’s the one thing you wish you knew right after your diagnosis?

How hard it would be to move and how easily fatigue comes. It’s paralyzing.

I don’t think of it as pain. I’m not in pain. My symptoms make me feel like I’m walking in molasses with 50-pound sandbags tied to my ankles. It’s so hard to move sometimes.

Even with a new hip, I still feel a bit heavy. My nonsurgical leg is the heavy leg with foot drop, so it’s still semi-challenging to walk. I move at a slower pace to be safe, and now I don’t walk with an involuntary limp. The new hip is a blessing. I’m very grateful for that.

What advice would you give to someone just starting treatment?

If you have a good neurologist or MS specialist, listen to what they have to say. Self-educate, reach out, and get as much info as you can.

What is the most challenging part of living with MS?

Accepting that your life has changed. Unless a miracle comes around, it’s never going back.

It really sucks when I think about it. I just can’t do things like I used to.

I played a cornhole game with my son, and I was a sweating, stumbling mess. It’s really hard to know that you have that limitation.

Sometimes it can be physically challenging, and my legs get heavy. I can still do everything with my hands and arms. I haven’t lost my dexterity, coordination, and cognitive abilities.

I just do what I can and realize that I have a limitation. I don’t try to exceed it. I never try to push because I’d rather do everything safely. So I can be around for my loved ones.

What led you to become involved with Bezzy?

It’s nice to have Bezzy as a resource and an avenue. If you need to vent or share your feelings, Bezzy gives you the chance to be part of an online community. You can share experiences and talk with others on the same level. You can relate to what people share.

There are two online friends I’ve made that I communicate with regularly. My wife and I write to one pen pal we met on Bezzy. We exchange gifts, talk about life stories, and motivate one another.

One friend from Bezzy sent me ice packs for relief. It’s great when someone can share life experiences, whether that be recipes, funny movies, or something else. It’s nice to meet people who are like-minded.