MS Connection Blog

What CAM Can – and Can’t – Do

A few years after I was diagnosed with multiple sclerosis I went to a doctor’s appointment for reasons unrelated to my MS. The nurse who took my medical history confided in me, behind closed doors, that she, too, had MS – and that she was treating it not with one of the handful of FDA-approved disease-modifying therapies (DMTs) that were then available but with bee-sting therapy.

Why the whispers? She didn’t want her colleagues – and especially not the doctors she worked with -- to know she had chosen this complementary/alternative medicine (CAM) method over one that was more widely accepted in the medical community...

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A Challenge

My dog-walking buddy told me yesterday that her son, who is taking flying lessons, will soon take his first solo flight. My first reaction was “Yikes!” My second was, “Wow, good for him.”

And my third reaction? Wondering why I have never tried anything like flying a plane. I am perhaps the most risk-averse person on earth. That translates to my having led a nice, safe life (knock on wood!). But I sure haven’t done much that’s exciting or challenged my boundaries in any major way...

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Why I'll Walk

This weekend, I'll join my team, Walk Steady, for Walk MS in Burlington, Vermont. I decided to do the walk to show my support for other people who have MS, especially in my state, where the number of people facing this disease is higher than average. If raising a little money and generating a little visibility for MS can help in anyway, then I want to participate.

Now that it's getting closer, I'll admit that I'm nervous.

  • What if it's cold? My leg gets stiff when it's cold.
  • What if I can't walk three miles? I think I can, but I haven't lately.
  • What if I have a limp? I limp when I'm tired and that would be embarrassing.
  • What if I trip? It wouldn't be the first time.
  • What if I'm sad? Because having MS is a hard business.


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Inspiration for Your Next MRI

I was just thinking about the fact that another MRI is in my near future, as my annual checkup with my neurologist is drawing near. I don’t mind MRIs at all. Before I ever had one, I feared I’d find it claustrophobic. But my yoga practice has taught me how to calm my mind and my breathing, enabling me practically to fall asleep when I’m in that tube.

Of course, not everyone is as comfortable getting MRIs as I am. Many freak out over being so tightly encased in the tube, and some have trouble staying still during the long and noisy scanning period...

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Thanks, AAN!

The American Academy of Neurology recently published guidelines for addressing psychiatric disorders in people with multiple sclerosis. That is an important, and most welcome, step.

As the AAN’s paper points out, people with MS are at increased risk of a number of psychiatric illnesses, particularly depression and a disorder called pseudobulbar affect, a phenomenon in which people laugh or cry at inappropriate times without feeling particularly happy or sad... 

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I’ll admit it: Contrary to my usual positive, inquisitive approach to multiple sclerosis, I cried last December when my MS symptoms flared. I cried long and hard.

I remember returning home from work, my left leg stiff and weak, stride slowed, with nobody home but the dog and a very demanding cat, and it just poured out of me, the kind of sobbing thrust from the gut, deep and low. It kept coming and coming. I let it. I cried because nobody could hear me. I cried because I felt I hadn’t appreciated walking enough when I had the ability. I cried because I felt responsible for all of it.

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In May 1997 I graduated from the University of Michigan, Flint with a Bachelor of Arts degree in sociology. I was diagnosed with multiple sclerosis six months later. I was 23 years old.

From the beginning, this disease was aggressive. Within a year of diagnosis, I had tried each of the three disease-modifying medications that were available at that time. Unfortunately, I continued having flare-ups almost monthly. I spent numerous hours receiving intravenous steroid infusions to combat inflammation.  At physical therapy I learned how to properly use a simple cane, but my MS was relentless. I quickly learned how to use a small-base, and then a large-base quad cane to assist me with my wobbles. When my wobbles became falls, my therapist recommended using a walker...

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My path to a life less traveled

I don't know if we each have a destiny, or if we're all just floating around accidental-like on a breeze, but I, I think maybe it's both.

-Forrest Gump

The other day, as I watched my IVIG medicine slowly drip, drip, drip into my body, I had a thought. “I wonder how many millions of events had to occur – exactly as they did – to bring me and my wife, Angela, together?”

The love of my life had just left the infusion suite after dropping by for a visit on her way to work and it was a wonder to me how lucky I was – we both were – to find each other and to be blessed with our two beautiful children and so much happiness...

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Choose Wisely

When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with those pre-natal classes. My entire plan was just to do whatever the doctors told me to do.

When it comes to MS, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me. Particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements?
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Falling Into Place

I recently asked myself, “Has using art to examine and share the effects of MS on my day-to-day life changed me?” The answer is an emphatic "Yes!"

I didn't start taking self-portraits until 20 years after being diagnosed with primary progressive MS in 1988. During those years, I managed to cope with my symptoms by simply getting on with my life. Of course, there were physical limitations I needed to respect. For instance, walking became very difficult – so I first used a cane, then a walker and finally in 2000, a mobility scooter. And gradually my hands became less and less able, curling in on themselves, and making it hard for me to hold onto objects without dropping them. I adapted by changing my primary art medium from drawing and painting to photography. I also avoided writing by hand as much as possible, preferring to use the computer. For the rest of it, I just figured dropping things on the floor was a fact of life, like it or not.
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