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 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.
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.
The living room
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.
A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms.
The study room
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.
An infrared heater and a blurry mirror are used to simulate how a hot shower or weather can flare MS symptoms.
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.
“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)
It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars.
Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly tighter. I’ve flown quite a bit for business and pleasure, and I’ve learned a few things that make my life a little easier at the airport and in flight. Here are a few of my tips for smoother flying with MS:
1. Get some wheels
Airports, particularly those handling international flights, can be huge. Even if you can walk you really don’t want to walk from check-in to the plane.
I travel with a scooter that’s very light and also can be folded like a baby stroller. I drive the scooter right up to the aircraft door. Its battery is taken on board (FAA regulations require that it be stowed in the overhead) and the scooter is stowed with baggage. When we arrive, the scooter is returned to the aircraft door and off I go. Note: This works well with a lightweight scooter. If your scooter is larger and heavier, or if you’re in an electric wheelchair, you’ll need to check it at the gate before flying rather than at the plane door. The airline will use an on-board wheelchair to move you from the gate to your seat, if necessary.
If you’re not traveling with a scooter arrange for a wheelchair, even if you may not think you need one. Trust me, you’ll be glad you did. The airline will provide this from check-in to the gate and in reverse when you arrive. (There is no charge, though tips are accepted.) Request the chair when you make your reservation either via the airline’s website or with an agent on the phone. If you’re buying your ticket through a travel agent or third-party website, it’s a good idea to phone the airline three days ahead of your flight to ensure they know you need a chair. This notification also should be done if you’re traveling with a scooter or an electric chair.
2. Join TSA Pre-Check
Pre-Check is the Transportation Security Administration’s program for speeding passengers through TSA security checks. Membership in the Pre-Check program requires you to fill out an online application and then appear for a 10-minute interview at a TSA location (usually at an airport), where you’ll be fingerprinted.
A five-year membership is $85. In exchange, you’ll be entitled to use the (usually) faster pre-check security line at the airport and won’t be required to remove your shoes, belt or light jacket. You also won’t need to take your laptop or liquids out of your carry-on bag. Though someone on a scooter or in a wheelchair is usually directed to the Pre-Check line even without Pre-Check membership, you’ll still need to go through the hassle of removing all of those items. To me, not having to do that is more than worth the cost and effort of signing up for this program.
For international travelers, an additional $15 and a slightly more extensive interview will get you a Global Entry card from U.S. Customs and Border Protection. This allows you to use an automated kiosk for customs and immigration clearance at major airports in the U.S.
If you have concerns or questions involving airport security, the TSA has a special office for help called TSA Cares. The office suggests contacting it three days before traveling at: (855) 787-2227 or TSA-ContactCenter@tsa.dhs.gov
3. Pre-select your seat before flying
Don’t wait until you get to the airport to select your seat. Most airlines allow you to choose your seat when you buy your ticket. Doing that may allow you to nab an aisle seat or one near a restroom. Many airlines now have two classes of coach seats: regular and premium. Premium, of course, costs a little more, but the extra legroom is worth it to me even though I’m only 5 feet 6 inches tall. Those few extra inches allow me to stretch my legs and even to stand. I also can squeeze past others in the row more easily if I wind up in a window seat. And things are a lot less uncomfortable if the passenger in front of me decides to put his or her seat back as far as it can go … right into my lap.
Premium coach seats are at the front of the coach section, which means there can be a downside to sitting in one. These seats are sometimes located far away from coach restrooms, which are only in the rear on some types of aircraft. I’ve found, however, that if I explain to a flight attendant when I first board the plane that I have difficulty walking in the aisle, they’re usually willing to allow me to use the higher-class restrooms up front on the other side of that blue “iron” curtain.
We all know that air travel isn’t as easy as it used to be. But a little advance planning can do a lot to smooth your flight.
(This first appeared as my regular column in Multiple Sclerosis News Today)
With the recent approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “but how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it can still mean a higher co-pay than some patients with insurance can afford. And it can appear to be totally unaffordable for those without coverage. Unless you know how to get help with those drug costs.
About six months ago I wrote about the programs that various drug companies and foundations have to assist MS patients in paying for their drug. With lots of folks looking for that help I thought it would be a good idea to review some of what’s out there.
Payment help from MS drug manufacturers
In the U.S., many drug companies have programs to provide their high-costing MS drugs to patients at a deep discount or, in some cases, for free. For Ocrevus, drug manufacturer Genentech has a number of options. For other MS drugs, the National Multiple Sclerosis Society has an excellent, drug by drug, list of these programs on its website. I recommend checking it as a first stop in your search for help.
But there are rules regulating this practice in the U.S. and they don’t make a lot of sense from a patient’s viewpoint. Here’s how they work. If you have prescription drug insurance, either through your employer or as an individual, a drug company is allowed to reduce the amount of your co-pay for their drug. When I was still working full-time, I was prescribed the drug Ampyra. At that time the average wholesale price for a 90-day supply of Ampyra was about $1,000 a month. My insurance covered about 50% of that, so I was left with an unaffordable co-pay of about $500 a month for a drug that was really helping me walk. Fortunately, I was able to take advantage of Acorda’s patient assistance program to limit my co-pay to no more than $40 a month, and I was able to continue on that drug.
Then I retired and moved from my employer’s drug insurance plan to Medicare Part D (the section of Medicare that pays for prescription drugs). But, under the Medicare rules, drug companies aren’t allowed to pay-down the co-pay, as they do with private insurance. They must either provide the drug totally free of charge to a patient or they can’t provide any assistance at all. And, to receive that no-cost benefit the patient’s income must be under a certain limit. My retirement income was too high to get the drug for free, but I still couldn’t afford the big jump from a $40 co-pay to $500 a month, so I had to go off the drug.
But, there’s another way …
Help from foundations
A foundation is the good place to turn when you have private insurance or Medicare, you’re still stuck with a high co-pay and the drug company is unable to help. It takes patience and good timing to obtain help from these non-profits, but it can be worth the effort. If you qualify for the help (there’s still an income ceiling but it’s usually fairly high), a foundation will approve a monetary grant for you. The grant will cover your co-pays and be paid directly to the pharmacy that’s providing your drugs for a specific amount of time, usually a year.
At one time I was receiving a grant of $6,000 a year from a foundation which covered all of my co-pays for Aubagio for that year…a significant out-of-pocket savings. Some of these foundations limit their grants to people on Medicare, while others also include patients with private insurance. A list of some foundations that will pay for MS drugs can be found at the bottom of the National MS Society webpage that I mentioned earlier.
You’ll need patience and good timing to travel this route. The foundations help patients with many different diseases and they can quickly run out of money for a specific disease until new donations are received. The problem is, the foundations don’t announce when their coffers are replenished. So, you need to check their websites, or call them, as frequently as possible to see if they have new money, and then apply quickly when they do.
I’m an old guy and it’s been a looonnng time since I was diagnosed with multiple sclerosis. Not so for a young man named BJ Baker.
BJ is in his late 20s and he was having a very bad day the other day. He was too tired to do a (seemingly) simple cleaning job around the house. So, he vented in the way that other young MS patients would understand. BJ used to write wrap music, so he vented in rap poem. Here’s what he posted on the “We’re Not Drunk, We Have MS!” Facebook group. When you read this try to do it with a “rap” rhythm.
“As ur body weakens and muscles soften, starting a project and not finshing unfortunately happens often.
As you get older and age no worries thats to be expected, but when ur 27 that shit gets to be perplexin.
With M.S. its one thing after another as i try to not be a bother, as i go back in time thru my brother and see the future through my father.
no to camping trips, bonfires, outside parties being mean isnt my intention, its just the night blindness, numbness, lack of balance, make me the center of attention.
First dates for closeness but not super pushin for a 2nd, i enjoyed ur company u were very pleasant.
Not trying to be a jerk dates are fun and thats for certain, but how do you jump into a relationship already feeling like a burden.
Sometimes i lay in the dark all day pretending not to hear my phone, i desperately want company but feel im supposed to be alone.
Laying here typing rhymes after being beaten by a chore has feelings coming to the surface, the M.S. fog has me forgetting this poems purpose.
As ur body weakens and muscles soften, starting a project and not finishing unfortunately happens often.
As you get older and age thats to be expected but when ur 27 that shit gets to be perplexin.”
I’m not sure what to suggest to someone 40 years younger than me about what to do when “shit gets to be perplexin.” Fortunately, my MS progressed slowly and I was able to do what I needed to do, including working full-time, for many years after I was diagnosed at age 32.
It’s not a rap, but my philosophy is simple: Even a pair of deuces can be a winning hand if you play it right.
As I get older my act’s gotta get bolder. Alone would be perplexin’, I gotta do more flexin’. Not gonna make excuses. Not even for my deuces. My future is my makin’, no time for any fakin’. It really ain’t perplexin’.
(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)
(Photo: Mathys Cresson)