About MS…

Seaside, Florida – 2012

 

Why do we care about MS? Well, let me tell you…

When Bryan was in his early 20s, he and some of his classmates in grad school would get together to play tennis. One time, Bryan became weirdly overheated and felt tingling in his limbs but the sensation soon passed. A couple years later, he and his buddies were doing a lot of running to get ready for a 10K. The weekend before the race, Bryan woke up with tingling in his legs that lasted for days. The doctor told him he had pinched a nerve in his back while running. The tingling went away and life was back to normal. A couple of years later, it happened again. This time, Bryan went to the doctor and wound up in the hospital. After an MRI of Bryan’s brain and spinal cord showed several lesions (areas of scar tissue) the doctor drew fluid off his spinal cord to confirm the diagnosis: Multiple Sclerosis. That was 1999. Bryan was 29 years old.

What is MS?

Multiple Sclerosis (MS) is an auto-immune disease that causes Bryan’s immune system to attack his brain and spinal cord. The attacks leave scar tissue behind which interferes with signals going to and from his brain and spinal cord and cause various symptoms.

What does MS do to you?

MS is completely unpredictable. Some people are debilitated by it and others find it a mild nuisance. Because the attacks cause scar tissue to build on your brain and spinal cord, you can lose functioning of pretty much anything. In Bryan’s case, the primary impact has been loss of mobility. He began using a cane in 2009 and a got a scooter/wheelchair in 2011. (He uses a walker around the house.)

 

Kneeboarding on
Lake Martin, Alabama – 1992

Is MS what Michael J. Fox has?

No, he has Parkinsons. Totally different.

Is MS what Stephen Hawking has?

No, he has ALS. Totally different.

How is MS treated?

There is not a cure for MS although a lot of promising research is underway. In the meantime, there are several medications available to slow the progression of the disease. Bryan was on Avonex (a once-a-week shot) for 9 years and then Tysabri (a once-a-month infusion) for 3 years. The Tysabri worked really well, but he had to quit when he developed anti-bodies for a fatal brain disease, one of the trickier side effects. In December 2014, Bryan began a newly approved treatment called Lemtrada, a chemotherapy administered for 6 hours/day for five days then repeated a year later, with monthly blood work to monitor side effects for 5 years.

Bryan, we prayed for you years ago. Why aren’t you dead yet?

(Bryan said I had to include this one!) Technically nobody asks this question – but they do occasionally ask how long he has. Who knows! How long do you have? 

Can you die from MS?

The National MS Society has said things like, You’ll die with MS, not from MS – and – MS only shortens life expectancy by 5%. Both are true in the sense that falling from a plane won’t kill you, it’s hitting the ground that places you at risk. The National MS Society used to try too hard to convince you the view from the plane is really beautiful and to be enjoyed – never mind the ground. They’ve gotten better. In truth, the risk of dying from MS depends on several factors but usually includes pulmonary malfunction, infections, aspiration pneumonia, and unfortunately, suicide.

 

Bryan in 1st grade – 1976

Didn’t Richard Pryor die from MS?

No, he died from a heart attack – his third heart attack – but he did have MS.

Is there more than one “kind” of MS?

Yes, technically there are four types of MS. Bryan’s diagnosis is Secondary Progressive.

Does Bryan take his medication?

Yes, Bryan takes his medication. (Wouldn’t you?) He takes a fist full of meds and supplements – twice a day. He does everything he is supposed to do.

What causes MS?

Nobody knows what causes MS but the leading theory is that it’s triggered by an unknown virus. A strangely high number of people around Bryan’s age from his hometown have MS.

Is MS genetic? Will your kids get it?

If our kids get MS, I will die. It was very important to me to either procreate responsibly or adopt. Bryan and I did a lot of research, spoke with doctors, and met with a genetics counselor before we became parents. Neither we nor they could identify any risk factors, and at the time, there was no known genetic basis for MS. When I was pregnant with Michael, a report came out identifying a common gene in people with MS that is believed to make them susceptible to an unknown trigger.

Does anyone in Bryan’s family have MS?

No one in Bryan’s family or mine has ever had MS.

Hey Kim! Great news! I know of a cure for MS!

This one is tricky. Bryan rolls his eyes when people tell us about magical little-known “cures”. (Which is like once a week…) I try to take it the way it’s intended because you never know, right? I am almost always willing to check out your herbalist, faith healer, dietician, homeopath or whomever. Please don’t think I am being cynical when I say there is no top secret cure for MS. Around 400,000 Americans are living with MS and make easy prey because a progressive disease can make you feel a wee bit desperate at times. A lot of people do get “cured” in so much as they see their symptoms subside for a period of time – as Bryan did in the early years of his experience with MS. But the MS comes back – and hits harder.

I heard eating clay can cure MS.

Fascinating.

I heard sitting inside a wet cell battery will re-align ions in your brain and cure MS.

Really? I heard aliens built the Pyramids. For real.

I heard smoking pot helps people with MS.

Actually, that is true: marijuana provides relief from MS symptoms and slows progression of the disease although Bryan has never tried it because of the implications in his line of work. (He could tell you specifically, but then he’d have to kill you. Ha!)

What resources are available for people with MS?

The National MS Society is a really wonderful organization. They are not only the leading advocacy in research and legislation but they’re incredibly supportive to individuals and family members affected by MS. We enjoy the dinner seminars, social activities and participating in the Walk MS fund raiser each year.

How are you guys doing? How is Bryan?

Honeymoon in Victoria, British Columbia – 2003

Bryan is good and we are good. I think sometimes people hope that I mean Bryan is better… We look forward to the possibilities of future medical breakthroughs and try to focus on all of life’s blessings in the meantime. When Bryan was diagnosed, he made peace with it, knowing that God is faithful.

How are the kids?

They’re just regular kids. This is all they know – it’s their “normal”. We reinforce all the many blessings we have that more than compensate for our trials. I am inspired by something Meredith Viera said of her husband having MS: “I think our children are much more empathetic because of having a dad who has issues than they would have been otherwise.”

What can we do to help?

The best thing you can do is to pray for us. After that, anything you can do that allows us to just be normal is greatly appreciated.

Who are some famous people who have MS?

Ann Romney (Mitt’s wife), Clay Walker (country music singer), Montel Williams (talk show host) and many more….

Please take a moment to ask a question or leave a comment! We would love to hear from you!

 

4 thoughts on “About MS…

  1. Bryan and Kim, stopped by your site. I’m impressed by it ! Wish Bryan the best in his new treatment. Wish your family the best also. It’s the best thing to let life just happen and let the worry pass by. I myself need to pay attention to my own words that I just posted ! My family is just fine. Prayers and blessings! Love, Currun.

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