Category Archives: Living with MS

She Has #MS and She Just Hiked 500 Miles!

Well, 460.75 miles (741.5 km), to be exact.

When I wrote about April Hester in late September, the headline on my post was “She Has MS and She’s Hiking 500 Miles.” Well, she did it, hiking the Palmetto Trail from Walhalla, in the South Carolina mountains, to Awendaw, on the coast. With husband Bernie alongside, April completed the hike on Nov. 3. The couple had expected the hike to take 35 to 40 days. They did it in 34!

April with MS Warrior

April with Madeline, newly diagnosed with MS, who drove eight hours to hike a bit with April.
(Photo courtesy of Bernie Hester)

April was diagnosed with MS in 1996, just after she turned 20 years old. Like many of us, she has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot. April used “trekking” poles for the hike, even when the trail took them through through the downtown sections of some towns. She also wore ankle braces.

Needless to say, the hike wasn’t easy. Over the first seven days, the Hesters covered almost 100 miles of mountains, with some sections that were almost vertical walls. Bernie Hester tells me, “April nearly lost two toenails but we pushed through all the pain.”

The further she goes the stronger she gets

April is on one DMD, Gilenya. She also tries to eat a lot of vegetables and fish. But, Bernie says, the hiking exercise is what really builds April’s strength:

April crosses the stream

Tough going as April crosses a marsh. (Photo courtesy of Bernie Hester)

I can say from watching the progression that, as hard as it was on her in the beginning, the more exercise she did the stronger she got. The transformation happened right in front of me and it was amazing to watch. The hardest part was getting started with all the falls, short distances, quick breaks needed and learning curve of how to do long distance with MS. But once we got it down, she just got stronger and stronger.”
That’s probably a good take-away for all of us who are able to do some sort of exercise, but who don’t. Day three, as Bernie told me, was “a tough day as we ascended to Sassafras Mountain, the highest peak in South Carolina. April had a lot of struggles and we only managed to cover nine miles that day. But she pushed hard so we could make the summit and we were rewarded with a beautiful sunset.”

 

Isn’t that the kind of effort and reward that those of us with MS should try to seek every day?

Why did she hike?

April hiked the trail to raise awareness about the fight against MS. She also hoped to raise money for the National MS Society. Unfortunately, she fell short of a lofty goal. There’s still an opportunity to make a donation, however, by clicking here.

You can also read Bernie’s day-by-day journal of the hike by clicking on April and Bernie’s Trail Journals web page.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com)

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Have a Say About Accessible Parking

If you have MS it’s probably happened to you.

You have trouble walking but the few accessible parking spots in the lot are full.

You find an accessible spot but someone is parked in the hash-marked area and there’s no room to get your chair or scooter out of your van.

There are parking spots but the curb cut to the sidewalk is blocked.

So, you mutter a few words under your breath and drive on.

But I’ve just discovered a new group that’s trying to make parking better for those of us with a disability. It’s called the Accessible Parking Council. And it’s going to be participating in a stakeholders’ forum about accessible parking and handicapped placard abuse in a few weeks. The session, on December 6, will be held by the U.S. Access Board. That’s the federal agency that’s responsible for developing and updating the guidelines of the American Disabilities Act (ADA).

Even better than that….you can have your voice heard at that forum by participating in an on-line survey.  The Accessible Parking and Placard Abuse survey takes about 10 minutes to complete and it’s hoped that it will impact policies related to parking for people with a handicap.

“Abuse and other significant issues preventing people with disabilities from using accessible parking have not been adequately addressed on the national level,” says Helena Berger, President & CEO of the American Association of People with Disabilities. “The results from this survey — provided by individuals with disabilities that need accessible parking — should go a long way in developing the right national solutions to this age-old problem.”

But, time is of the essence. In order for the results to be presented at the December forum you need to complete the survey by November 1. That’s only a few days from now. I’ll be doing that as soon as I finish writing this post.

 

She Has MS and She’s Hiking 500 miles

April Hester has MS. She was diagnosed in 1996, just after she turned 20 years old. Like many of us, April has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot.

But unlike many of us, April and her husband Bernie are in the middle of a walk. More accurately, it’s a hike — a 500-mile hike, from Walhalla in the mountains of South Carolina to Awendaw on the coast, along the state’s Palmetto Trail.

Bernie and April Hester on the trail. (Courtesy of Bernie Hester)

As you can imagine, it’s not going to be easy. April is using “trekking” poles for the entire hike, even when the trail goes through the downtown sections of some towns. She’s be wearing ankle braces. But, as Bernie Hester told me in an email, “Her big problem is balance, she falls a lot and I mean a lot. Most of the time after the first 3 miles her legs get weak and her right foot experiences foot drop. We also have to break a lot so she can keep going. Then sometimes she can just go, we had a day where she had some issues early then caught her second wind and we did 22 miles, I was the one holding us up!”

The two expect that the toughest parts of the hike will be the beginning and the end. The start of the trail has a lot of hills and valleys, with rugged terrain on the trail sections and a lack of re-supply options. The end is a remote section over 50 miles long, through a national forest. Again, few resources will be available, no re-supply areas are around, and it has a lot of swamps.

Packed and ready to go. (Courtesy of Bernie Hester)

Believe it or not, this couple has hiked this trail before. They did a similar hike this year, from February through April. Back then, they spent only a few nights in tents and a lot of nights in hotel rooms. They also skipped some highways that span some gaps in the trail. This time will be different, and more difficult. As Bernie explains on the couple’s Trail Journals website, “we will get dropped off this Sunday morning with what’s on our backs and other than the caches & care packages we are on our own for the next 500 plus miles to the coast.”

Bernie and April say they’re making this hike to raise awareness about the fight against MS. They’re also hoping to raise money for the National MS Society… $100,000, in fact. (You can donate here.)

The hike began on Sunday, Oct. 1 and as of Oct 16 they were about 200 miles into it. Bernie and April expect the full hike to last 35 or 40 days. You can follow the pair at the Trail Journals website or on Instagram.

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

Walk-testing the New Bioness L300 Go

I’ve been using a Bioness L300 for just over five years to counter my foot drop. Without the L300 strapped to my left leg, it’s difficult for me to walk more than 25 or 30 steps, even with two canes.

The L300 is a functional electronic stimulator (FES). Each time I start to lift my left leg to walk, it sends a low-intensity electrical pulse down a nerve that runs from my knee to my ankle. That pulse forces my foot to flex upward from my ankle so that my toes don’t drag. The electrical pulse replaces the signal that my brain should be sending to the nerve that my MS has blocked, and it counters my foot drop.

About six months ago, L300 manufacturer Bioness received the OK from the U.S. Food and Drug Administration to market a new model of the L300, the L300 Go. A few days ago, I had an opportunity to “test-walk” the Go, and here’s what I found.

No foot sensor neededL300 Go

The biggest and best difference is that the L300 Go doesn’t require you to use a foot sensor in the heel of your shoe. In the original L300, the sensor is used to detect your motion as you begin to walk. It sends a Bluetooth-like signal to the cuff on your leg, telling it that you’re trying to move. The cuff then generates the pulse that stimulates the nerve in your leg and helps you to lift your foot.

That means that anytime you change shoes, you need to move the sensor to the pair that you’re going to wear. Not only is that a nuisance, there can be a lack of consistency in where you place the sensor in the shoe. Also, because insoles are different, there can be the same inconsistency in the amount of heel pressure that’s required to trigger and to end the pulse.

Naturally, you can’t use the original L300 if you’re barefoot.

3-D motion detection

Without a foot sensor, the L300 Go’s cuff detects the start of your leg motion. This is similar to the process used by the WalkAide, a competitor of the L300. Unlike the WalkAide, the L300 Go has a 3-D-motion-detection system. Not only does it detect the forward and backward motion of your leg, it also detects sideways movement and leg rotation. This allows a physical therapist to adjust the unit more precisely to make it more responsive to each patient’s unique gait. To provide this three-way detection the Go contains four electrodes, compared with the original unit’s two.

No control unit

The original L300 requires you to carry a small control unit, which you use to turn the device on and off, put it into “test mode,” and also to adjust the intensity of its pulse. With the Go, this is all done on the side of the cuff. (If you really want a foot sensor or a control unit, Bioness will sell you one. But why would you want one?)

The test walk

The Go looks and feels like the original L300. Maybe I walked a little faster with it. Maybe it triggered a little quicker. I don’t think that it allowed me to walk any further than normal. On the other hand, it was certainly nice to be able to sit in a chair without having to turn off the unit so that it wouldn’t trigger when I released the pressure on a heel sensor. Unfortunately, I forgot to test the Go walking up and down stairs. My guess, however, is that it would work better than the original unit because its trigger mechanism isn’t dependent upon heel pressure.

What’s it going to cost?

The Bioness rep told me that the Go will cost the same as the current L300. That’s about $6,200. I was also told that there would be a discount if current users wanted to upgrade, but she couldn’t say how much it would be.

Don’t count on insurance picking up the cost. Bioness apparently has had greater success recently getting insurance to pay for the L300 than when I got mine in the fall of 2012. But, it’s a fight and a lot of really good documentation is necessary. The same goes for Medicare and Medicaid. Again, don’t hold your breath waiting.

Do I plan to upgrade?

Nope, not at that price. Even with a discount, the benefit that I’d receive probably wouldn’t be enough to justify the cost of the upgrade, at least not now.

Bioness tells me that it intends to support the original L300 units for “at least the next three years.” So, I guess if my unit breaks down in 2020 or later, I may have to go for the Go.

If the L300 Go is right for you, however, Bioness expects to begin shipping it in October to patients whose doctors have given them a written order.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com).

Walking the Dog, An MS Adventure Story

It’s 7 in the morning and it’s raining cats and dogs. I need to walk our dog and the thought of it is not very appealing. We live in a condo, so this activity requires getting dressed, squatting down to feed Joey, squatting again to get him hooked up with his leash, getting my rain gear on and going down the elevator. Not a big deal for most folks, but a little bit of a bigger deal for someone like me, who has MS.Joey and scooter 1

I don’t actually walk Joey. He trots alongside me as I ride my scooter. We’ve gotten pretty good at doing this, but the elevator can be a bit of a challenge, as can meeting up with most other dogs. Joey, who is a Cocker Spaniel, likes people more than he likes most dogs. (If you’re a certain age, you may appreciate the Joe Cocker connection.) He also likes to be the boss. (Not to be confused with The Boss.)

In the rain, it’s a bit of a challenge to get off the scooter with my cane, have his leash in one hand and the poop bag in the other – especially if there’s another dog around. I give myself extra points for completing the poop pickup if the wind is strong, which it often is here at the ocean.

Anyway, it’s not easy having a dog or, for that matter, a cat (more about the cat shortly). So I was surprised when I was contacted by a writer for another website who was putting together an article about the benefits that accrue to someone with a disability who lives with a pet. Benefits? Let me think about that and get back to you.

Meanwhile, let me introduce you to TJ. TJ. is a retired grand champion show cat, and he knows it. Like most cats, TJ thinks it’s great fun to plop down in front of me as I’m walking – not such a good thing to do to a guy who walks with two canes. He tries to nibble my ankles when I’m sitting – a dangerous thing to do to a guy who has a cane. I accidentally stepped on his tail one day with my bad leg. For a very long five seconds I couldn’t move and he couldn’t move, but we each managed to escape uninjured. Of course, as with all cats, there’s also kitty litter. Need I say more?

Yes, I eventually told that writer, there are benefits to having a pet for someone with a disability. There’s never-ending companionship, at least with the dog. There’s that friendly greeting when you get home (dog only) and the piercing howl when you leave. There’s the warm body curled up next to you at night, leaving you about two feet of room in a king-sized bed (mostly dog, but the cat can get pushy).

And, if you put Joey and TJ together, the result can sometimes be some great entertainment:

So, back to the original question. What are the benefits of someone with a disability having a pet? As far as I can see, the benefits are no different from the benefits for someone who’s healthy! And, they’re usually worth an occasional walk in the rain.

When Do MS Symptoms Become a Relapse?

Am I having an MS relapse?

I saw that question asked the other day on one of the social sites I follow. At first, I thought, “Gee, doesn’t everyone with MS know when they’re having a relapse?” Then I realized that for several years after I was diagnosed, I was never sure if what was happening to me was technically a relapse and worth a call to the doctor. I’d wind up in the hospital being treated for a relapse, but only after my wife would spot a symptom getting worse and tell me that I needed to see my neurologist. It rarely dawned on me that what was happening was what we used to call an “exacerbation.” But I always walked better after getting treated with a course of steroids.

There’s a guide that can helpMSAA-Relapse-Tool-Kit

So, how can you know that you’re having a relapse? There’s now a really useful booklet that can help. It’s called, appropriately, the “MS Relapse Toolkit,” and it’s just been published by the Multiple Sclerosis Association of America. The booklet can be read online, downloaded as a PDF file, or ordered as a hard copy at the MSAA website. Here’s a thumbnail of what’s in it:

What’s a relapse?

  • Existing symptoms have worsened temporarily or recurred, or …
  • New symptoms have appeared
  • The symptoms have lasted for at least one or two days with no sign of a fever or infection (e.g. a UTI)
  • Tests show your myelin or nerves have been damaged or inflamed

When to call your neurologist?

The MSAA booklet, written by Aaron Boster, MD, and Jacqueline A. Nicholas, MD, MPH, suggests you call your doctor if:

  • The new or recurring symptom(s) has been present for at least 24 to 48 hours, or …
  • It’s been less than 24 hours, but your symptoms are severe and could affect your health or safety

As long as…

  • You don’t have a fever or any other signs of infection
  • Your body isn’t overheated, which might have resulted from the temperature around you, exercise, etc.
  • You didn’t overexert yourself
  • You aren’t having an unusually stressful day

The idea seems to be that the trigger for your problem should be medical and not the result of some external stimulus.

What else is in the Relapse Toolkit?

The booklet has another half-dozen chapters that include a list of questions to ask your neurologist about relapses, some handy, fill-in-the-blank forms for contact information and the drugs that you use, what to tell your doctor when you call, details of various treatment options, and some really useful ideas about planning, at home and at work, for a possible relapse. It even includes a crossword puzzle that uses relapse-related words.

The price is right

Did I mention that the “MS Relapse Toolkit” is free? As we used to say when I was growing up in New York City: “Such a deal!”

(This post first appeared on www.multiplesclerosisnewstoday.com)

Questions About Health Insurance for Your MS?

A lot of people on the various MS social media groups that I follow are worried about their health and drug insurance…losing it, not being able to afford it, etc.

The National MS Society and Can-Do MS have scheduled an insurance webinar this coming Tuesday and it looks like it will provide some good info. You can register by clicking the “RSVP” tab below:

Common Health Insurance Problems in MS: Solutions, Resources, and Strategies
Can Do MS and National MS Society Webinar & Telelearning Series
Learn more about common areas of confusion around health insurance affecting people with MS, how to resolve issues, and resources and tips for getting the most out of health insurance coverage.

September 12
Online and/or by phone

RSVP