Monthly Archives: June 2017

If You Have MS You Need to Speak Up Now

This came into my inbox today and I think it’s important to pass it along to as many of us with MS, or another chronic disease, in the U.S. as possible. We may never have another chance to stand in the path of these cuts.

Health care ad

Here’s why we’re opposed to this bill:
  • Many families will have to pay higher premiums.
  • If you’re fifty or older, insurers could charge far more than they do now.
  • There are millions of Americans on Medicaid, including children, the elderly, and people with disabilities that would be cut off completely.
  • People with pre-existing conditions could be priced out of meaningful insurance.
  • Americans could face lifetime and annual limits on care.

Speak up now before it’s too late.

Don’t let Congress jeopardize your health. Call your U.S. Senators at 202-224-3121 and/or write to them today.

 

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In case you missed my live FB stream…

You can see a recording of this afternoon’s live stream on the MS News Today Facebook page here. I’m sharing my experiences with various DMDs that I’ve used over the past 20 years or so.

I’ll be live on Facebook talking about DMDs for MS Fri., 22 June, 3pm edt

I hope you can join me Friday on the MS News Today Facebook page to share experiences using Disease Modifying Drugs. The live stream will begin at 3:00 pm eastern time, 7:00pm GMT, and will run about an hour.

Ed

An MS “House” That Lets You Walk in My Shoes

Several months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.MS House sign

People walking through the MS House are able to see and feel things from a different, and often difficult, perspective. For a short while, as they walk through guided by headset audio, they can better understand what multiple sclerosis is all about.

The living room

Living room
(Photo by Andreea Antonovici)

A TV displaying half-definition pictures is used to illustrate vision problems. An armchair that’s set very low to the floor demonstrates the difficulty of getting up from a chair due to leg strength issues and fatigue. A sign explains that MS fatigue is like sitting down, and you’re so tired that you can’t get up again. An inflatable mattress is on the floor to simulate how someone with MS has difficulty balancing while walking and may be very wobbly.

The kitchen

A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms.

The study room

Study room
(Photo by Andreea Antonovici)

A “jumbled” computer keyboard simulates how cognitive problems may make it difficult to find the correct word to use when typing. These problems are also illustrated by an “Alice in Wonderland” book where the same page is read over and over again because, by the end of the page, the reader has already forgotten what he read. Ankle weights appear under a sign that says “Don’t drag your feet,” and then describes how people with MS can feel as if they’re walking through sand.

The bathroom

An infrared heater and a blurry mirror are used to simulate how a hot shower or weather can flare MS symptoms.

On display

The MS House was created under the sponsorship of the European Multiple Sclerosis Platform. It was displayed to mark World MS Day at a meeting of the European Parliament in Brussels, May 30–June 1. It would be nice to find a way to put it on a worldwide tour to broaden everyone’s understanding of what those of us with MS experience in our lives.

My Lemtrada Journey: “Do You Think You’re Walking Better?”

“Do you think you’re walking better?”

The question came from my wife, Laura. It’s now about 4 1/2 months since my first round of Lemtrada infusions and I’ve had ups and downs physically. The day she asked, I was feeling pretty good. I also think I’ve been sharper mentally than in the past. Yet I wasn’t sure I’d noticed any improvement in my mobility.

“I don’t know,” I told her. “Maybe. It’s hard to tell.”

But she could tell. “Well, I think you’re walking better.”

Laura is a retired physical therapist, so she looks at my walking with a professional’s eye. My left foot drops and that leg drags. She thought the drop and drag were looking a bit better, and she told me to see if I could put my left heel down first when I walked.

I couldn’t do that but, in trying, I could see that my toes flexed upward, just a bit, rather than dragging. I could also lift my whole foot a fraction of an inch off the floor as I moved my left leg forward. So, yes, I seemed to be walking a bit better. Laura also noticed that I was standing straighter. Again, once she pointed it out, I could see she was right.

The next day I improved a bit more. Now, after getting rid of my usual morning stiffness, I find that, if I concentrate, I can lift my left foot high enough so that I can pretty much put my heel down first. And I’ve been able to do that for a couple of days now.

The last time I wrote about my Lemtrada journey was three months ago, and my roller coaster was spending more time in the dips than in the peaks. My fatigue was up and down. On several days it was tough to get out of bed. Other days I felt good when I woke up, but took a dive in mid-afternoon, and had to nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level.

Then I developed a fever and dry cough, which was diagnosed as a strep infection. It took an antibiotic, and about two weeks of rest, to regain my energy. Since then I’ve been on a plateau, not feeling bad, but not experiencing the walking improvement that some Lemmies report. Not until Laura’s six words the other day: “Do you think you’re walking better?” And, I do.

Of course, not everything has been perfect. I’ve written about a pain that I developed several weeks ago in my hips and thighs, and it’s still with me. I’m getting some physical therapy to see if that will help. And I’m stiffer than I’ve ever been in the morning.

My first post-infusion MRI and an appointment with my neurologist are scheduled for mid-June. I can’t wait to see what the scan and her 25-foot walking test show. Stay tuned.

(This is an updated version of my column that first appeared on www.multiplesclerosisnewstoday.com)