Monthly Archives: February 2017

The music of MS

[This post first appeared as my column in http://www.multiplesclerosisnewstoday.com]

You may not have heard this song, but I bet its lyrics will strike a chord.

I cannot feel my body.
I cannot feel my face.
My legs are pins and needles
and my mind is a disgrace.
I see in double vision,
so there’s more of you to admire.
Got a freaky disposition
and my soul is on fire.

The title of the song is “Mrs. Hypochondriac,” but singer-songwriter Alu’s symptoms are far from imaginary. Alu, (pronounced AY-loo) has MS. As she explains on her website: “Prior to being diagnosed with Multiple Sclerosis, I had a lot of weird symptoms that doctors couldn’t explain. People often accused me of being a hypochondriac. It was a really difficult time.” She calls the song “a story of survival — surviving a brief tumultuous marriage, divorce, and MS diagnosis.”

Alu was diagnosed with MS in 2012. Not long after that she wrote another song with an MS connection, called “Marie.” It ends:

Oh, Marie.
Life is never what it seems.
You can plan and prepare
but please beware:
Life will humble you.
Life will humble you.
This life will humble you.

Alu isn’t the only performer singing about MS. On YouTube, “Irishbear76” takes a more direct approach:

Possibly the most unique song, and certainly the most positive one that I’ve discovered, was written and performed by Kristen King. “Impervious” tells the story of how stem cell therapy changed her life:

Have you put your MS experience to music? I’d love to hear it, if you’re willing to share. Just drop a link, below, in Comments.

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Night Life

I rarely re-blog something but this post from Jen just struck a chord. My occasional, but recurring, dream is that I’m walking and suddenly realize that I don’t have my cane. Sometimes I care…sometimes I don’t.

Tripping Through Treacle

I often feel like I have another life…. one that I can only access when I am asleep.

Although I can sometimes feel frustrated about the amount of time that I spend in bed, it is needed for me to be able to function and feel vaguely human, as many who have chronic illnesses will understand.  But there is another aspect to sleep that I appreciate – the dreams.  And this is where my other life comes in.

In my dreams, I do not have multiple sclerosis.  I have my old life back, one without tiredness, mobility problems, a scooter.  In my dreams I walk.  And I walk and I walk.  Usually around cities.  Its almost like it is a subconscious thing – like my brain knows that I can’t walk well so it gives me every opportunity to do it when I am asleep.

dreams

There is a quote from…

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MS and falling the best way

[This item first appeared as my column on http://www.multiplesclerosisnewstoday.com]

Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It all happens in about three seconds, and how I handle those three seconds will make a big difference in how soon I get up, or if I get up.

I learned how to fall when I took judo lessons as a kid. It’s the first thing you’re taught. Even when you land on a mat, when someone throws you over his shoulder you want to do all you can to try to spread the impact and land on a body part that’s soft, like your side.

Those basic lessons have served me well over the many years that I’ve been tripping over my multiple sclerosis. A recent article in the New York Times confirmed, and added to, the falling techniques that I learned as a kid. Physical therapists, stuntmen, martial arts instructors and paratroopers (all of whom know a good deal about falling) agree on a few things:

  • Protect your head
  • Stay loose and don’t fight the fall
  • Don’t stick your arms out
  • Try to land on your side

Says jiujitsu instructor Paul Schreiner in the Times article: “Accept that you’re falling and go with it, round your body, and don’t stiffen and distribute the energy so you take the fall in the widest area possible.”

The website wikihow.com has put together a well-done series of illustrations about falling properly. Obviously, these are general recommendations. One size doesn’t fit all, but the info should help you grasp the concept.

One trick I’ve learned is that I try to toss my cane away from me if I’m starting to fall. Doing this allows me to avoid falling on the hard metal of the cane. It also frees both of my arms to protect my head and makes it easier to try to fall onto my side.

Says physical therapist Jessica Schwartz, in the Times article, “It’s almost inevitable you are going to fall, so you really should know what to do.”

Do you? Do you have any “tricks” to pass along that might help others?

 

 

Pills, shots or infusions for your MS?

[This first appeared as my column on http://www.multiplesclerosisnewstoday.com]

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher share of the market at the end of 2016 compared to 2015.  Tecfidera was at the top of the pills list with Aubagio gaining ground. But, final FDA approval of the infusion drug Ocrevus (ocrelizumab) could be a game-changer in the pill-shot-infusion decision.

Ocrevus

Neurologists and many MS patients are very familiar with Ocrevus. There’s a lot of chatter about it in online MS gathering spots, and many doctors report they intend to use it as soon as it is approved. And, even though most of the “buzz” is about prescribing Ocrevus for PPMS patients, it’s expected that a lot of doctors also are looking at it for those with RRMS. It could push ahead of other infusions, such as Tysabri and Lemtrada. as well as oral meds such as Tecfidera and Aubagio. Spherix reports more than one third of the neurologists it surveyed said they would have been likely to have started patients on Ocrevus, rather than on Tysabri, had it been available.

Weighing the treatment options

What drives these drug decisions? According to a Spherix report RealWorld Dynamix™: DMT New Starts in Multiple Sclerosis, the drivers include clinical considerations such as safety and efficacy, as well as non-clinical concerns including patient requests and the policies of the insurance coverage of those patients. Interestingly, it appears that neurologists are becoming more comfortable using high-efficacy DMTs right away for patients with aggressive MS, rather than working up to them from drugs with lower efficacy, but lower risk or cost.

Be involved in the decision

As the patient you should take an active role in your drug selection. A Spherix report released last fall showed that newly diagnosed MS patients are doing their research about DMTs. One in five of them are asking their neurologists about specific MS drugs. Those doctors say that 27% of their patients have a high degree of involvement in choosing the DMT they will use, 43% have moderate involvement, and 30% only low involvement. Unfortunately, more than 50% of the neurologists surveyed say that they, alone, choose the DMT the patient will use. About a third say they present a few choices, and then let the patient decide.  Only 10% of the docs say they present all of the options and then let the patient decide.

How did you decide which DMT to use? Are you thinking about changing?