Monthly Archives: December 2016

Starting Down the Lemtrada Road

[This is an updated version of my column that first appeared on http://www.multiplesclerosisnewstoday.com]

The final drip of my first week of Lemtrada infusions will drop in about 30 minutes.  The headline is: It was a good week with no significant problems or discomfort.  I’ll be writing about this experience, in detail, in my next column.  But first, for those who aren’t yet up to speed on my journey, some background.

A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis and is also being used by some people who have the progressive forms.  There have also been many reports of some people who have had some symptoms improved.  But, I was writing about those reports.  Now, it’s personal.

Treatment Starts Before the IVs

Two days before my first infusion I began to pre-medicate to reduce the chance of some side-effects. I’m taking Acyclovir to reduce the chance of contracting the herpes virus. Doctors say that Lemtrada treatments raise the chance of getting this virus for some people. The allergy drugs Zantac and Zyrtec are being taken to limit hives and rashes.  I also have on hand ibuprofen, Benadryl and hydrocortisone creme to use, if necessary, to treat any pain, rash, hives or any increased temperature.

The Infusions

The five days of infusions involve three drugs.  First comes Solumedrol.  My neurologist tells that it serves two purposes.  As a steroid it calms the body’s immune system. But it’s also a histamine blocker, serving as another guard against hives, rashes and the like.  I’m to receive 1,000 mg on the first three days, 500 mg on the second fourth and 250 mg on the final day.

Next comes 25-50 mg of Benadryl by IV.  Finally, the star of the show…the Lemtrada – 12 mg over four hours.  Oops, not done yet.  After all the drugs there’s a two hour “watch” period, during which IV fluids continue.  In all, 7-8 hours each day.  Whew!

Drink Up

For the next several months I’ll be drinking lots of water. (That’s going to be tough for this MSer who has spent the past 35 years trying to avoid water). My neuro, and most “Lemmies” who’ve had these infusions, say it’s the best thing to do to limit uncomfortable side effects.  Flushing the toxins and dying cells out of my system, they say, is the best approach to feeling as good as I can.

Watch What You Eat

There are also foods that I’ve been told to avoid for the first month after my infusions.  This is to reduce the risk of listeria.  They include:

  • Hot dogs and deli meats (This will be a hardship).
  • Refrigerated pates and meat spreads.
  • Unpasteurized milk and dairy products.
  • Soft cheese made with unpasteurized milk, e.g. Feta, Brie, Queso Fresco and Camembert
  • Raw sprouts
  • Smoked seafood
  • Raw fish, e.g. sushi (I wouldn’t, anyway).
  • Raw eggs or meat
  • Prepared salads, e.g. chicken salad, ham salad and egg salad.
  • Wash all vegetables and fruits thoroughly

And After the Infusions

For a time I’ll be continuing the meds that I began before treatment started and I’ll be taking Prednisone to taper off the IV steroids.

I’ve been told to expect a roller coaster ride of good and bad days for a week or two – headache, body aches and fever – some days feeling like I’ve crashed and burned and others where I’m feeling well. After a month I’ll be scheduling physical therapy. After four or five months I’ve been told that I should see an improvement in my overall endurance.

That’s quite a ride for a 68 year old guy to anticipate but, as I’ve said several times in writing about Lemtrada, the potential benefit makes the risk and discomfort worthwhile.

So, my fingers are crossed.  Unless I’m really dragging, and at the bottom of the roller coaster loop, I’ll be reporting on my ride in about another week.

 

 

 

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Louise Kennedy

Beating the MS Clock

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

I’m 68 years old.  I’ve had multiple sclerosis since I was 32.  I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago but I hoped that it wouldn’t steal too much of my life from me.  I certainly never thought of the possibility that I might live to a really old age with it.

But, here’s a story about someone who’s done just that.  Louise Miller has MS and, a couple weeks ago, she celebrated her 95th birthday!  Louise’s story is told by Mark Kennedy, who wrote about her in the Chattanooga Times Free Press:

Multiple sclerosis is an insidious companion.

Sometimes, it ducks into the shadows. Other times, it jumps out with menace. Always, it tests a person’s character.

Chattanooga’s Louise Miller, who turned 95 years old on Nov. 12, was featured in a Chattanooga News-Free Press article way back in 1979 after being named the area’s “MS Mother of the Year.”

If you are counting, that was 37 years ago.

Miller still has a framed copy of the newspaper article on her wall. It was a big, six-column story. She was pictured with her now-deceased husband, Austin, who owned Scenic Land Printing and Sales Co.

She was lauded in print as a mother of four and energetic volunteer for the MS Society, an avid gardener and member of the Red Bank Presbyterian Church.

The subtext of that article was the belief at the time that MS sufferers were on the clock, that their lives would almost certainly be cut short by the disease.

Multiple sclerosis is a condition of the central nervous system. Women are two to three times more likely than men to develop MS, which affects about 2.3 million people worldwide. It can cause fatigue, vision problems, numbness and mood changes, among other symptoms.

Today, Louise Miller lives at the Manorhouse Assisted Living and Memory Care facility on Mountain Creek Road under the care of a watchful staff. Her daughter, Susan English, lives in Texas and monitors her mother on an internet-connected camera.

At the time she was diagnosed decades ago, Miller was a vibrant middle-ager.

“At the time, it took us by surprise,” remembers her daughter. “We thought it was a death knell. Back then, there were no drugs and no cure.”

Until her early 80s, Miller battled MS by resisting a wheelchair. She used canes to walk until her balance became so unsteady that she could no longer get around safely.

Yet, here she is at 95, an inspiration for middle-age people today facing MS. With advancements in medicines and good medical care “people with MS may live an average of about seven years less than the general population,” according to the national MS Society.

Like a lot of older folks, Miller’s long-term memory seems more fluent than her short-term memory.

“I’ve come a long way from the tobacco fields,” she announced on the day I visited. “I hoed tobacco and cotton and everything else. It was a good life. I worked in the sunshine.”

About three years ago, Miller’s condition became grave and doctors feared the worst. In fact, they began to use the words that are often a prelude to death.

“They said, ‘Your mother has lived a good, long life,'” remembers her daughter.

At that point, English abruptly turned to her mom and asked: “Mom, do you want to live to be 100?”

“Well, of course I do,” she replied.

With that, English invited the assembled doctors to get onboard with her mother’s wishes, or the family would find a new team of physicians.

To see Miller motor around Manorhouse these days in her electric wheelchair and interact with friends and staff is to know the family made the right decision.

“She is very strong-willed,” English says. “She doesn’t think she is 95. She wonders why she is here with all these ‘old people.'”

MS, the great time thief, has been held at bay.

Of such blessings is Thanksgiving made.

You can contact Mark Kennedy at mkennedy@timesfreepress.com or 423-757-6645.  This story and picture are used with his permission.

Take Your MS on the Road

(This first appeared as my column in http://www.multiplesclerosisnewstoday.com)

“Round round get around.  I get around.”

I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks the other night.  The story profiled Cory Lee.  Cory has spinal muscular atrophy, which means he’s one of us gimps who get around on wheels.  For Corey, however, “around” means more than just wheeling around his neighborhood.  With the help of his mom, Cory has traveled to nearly twenty countries on several continents. And he blogs about it on curbfreewithcorylee.com.

If you’re stuck in a chair and you think you can’t travel, think again.  It takes some

istanbul

Istanbul

planning, and it may cost a little more than your average trip, but where there’s a wheel there’s a way.  Over the past ten years my wife Laura, my scooter and I have been all over Europe.  We’ve seen the Berlin Wall, traveled through the Vatican and taken a gondola ride in Venice. I’ve even rumbled over the ruins of Ephesus in Turkey and taken a tram up the cliffs of Santorini.  Closer to home, a visit back to the city where I grew up took us to see “Ground Zero” and the 9/11 Memorial and museum.

Cruising makes it easier

One of the things that make travel a whole lot easier for us is doing that travel on a cruise. These days, most cruise lines are used to dealing with wheelchairs and scooters and an accessible cabin, if you can get one, is a lot larger than a standard cabin..and at the same price.  Since you use the ship as your hotel you can visit multiple countries and only need helsinkito unpack and pack once.  The crews on the five cruises we’ve taken have all gone out of their way to help us, even lifting my scooter into and out of the small “tender” boat that’s sometimes used to ferry passengers from the cruise ship to the dock.  In Alaska, where we took a train to our ship, the train had a lift that took me, with the scooter, from the ground to the train door and I drove right on.

There are many shore excursions for cruise passengers.  Most involve large, comfortable  buses which have big luggage compartments underneath.  The scooter slides right in and out.  For more difficult locations, such as Ephesus, Turkey, Crete, Greece, St. Petersburg, Russia and Venice, Italy our travel agent hooked us up with a car and a tour guide.  It costs more but it allowed us to move at our own pace, see more places in a short amount of time and have help moving the scooter and dealing with any language difficulties.

Good travel info is just a click away

There are several travel agencies that specialize in travel for folks with disabilities.  Since we use a local agency I can’t vouch for any of these.  But sagetravel.com, flyingwheelstravel.com, (which sets up escorted tours), are two that I’ve come across on the internet.

There are also several on-line sites that can help you plan your trip.  If you think that a cruise is right for you I’d recommend taking a look at cruisecritic.com.  Not only can you scope out various cruise lines, ships and locations, it has an excellent forum devoted to disabled cruise travel. Gimponthego.com provides great one-stop-shopping for all sorts of travel info. Spintheglobe.net is a blog written by Sylvia Longmire, who has multiple sclerosis and who happens to be Ms. Wheelchair USA 2016.

If you can’t go far, go near

I know that some who are reading this may not be able to afford to travel like this. But there may be much simpler trips that can be made that are within driving, or even mass transit, distance of where you live.  My point is simply to encourage you to get around, no matter where that getting gets you.