Category Archives: Living with MS

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.

Getting Help Paying for Your MS Drugs

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.

 

MS through the eyes of a “20-something” rapper

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.

So, yo…

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)

 

 

 

 

ICYM My Facebook Live Chat

We had a great live chat, today, on the MS News Today Facebook page.

I had the pleasure of talking about my MS experiences and answering over 200 questions for about an hour.  ICYMI, you can click here to see the video.

More of these live chats are planned in the future, so stay tuned.

 

Talk With Your MS Doc About Keeping Your Job

(This first appeared as my column on www.multiplesclerosisnewstoday.com)

You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all the time on the online forums where we MS patients hang out. Work should be a part of that medical discussion.

In Europe, two organizations have teamed up to encourage medical providers to speak with their MS patients about working and their jobs, and they’ve created a program help them do that. The Work Foundation and the European Multiple Sclerosis Platform (EMSP) call it “Promoting Positive Work Outcomes for Europeans with MS,” (and I’m sure they won’t mind if this American spreads the word outside of the EU). The groups believe that supporting people in their working lives — something they call “workability” — should become a priority outcome of clinical care. The program focuses on four areas:

  • The work-focused nature of conversations between clinicians and people living with MS.
  • The challenges and barriers faced by people living with MS who wish to find jobs, keep them or return to work.
  • The quality of jobs available to people with MS and the practical steps employers can take to create fulfilling work.
  • The “workability” status, which includes economic, clinical and social benefits for wider society, including healthcare systems, small and big employers, and people with MS as well as their careers.

Talking about workability

An important aspect of this program is getting doctors and others who treat MS to talk with their patients about workability. The coalition’s guide is called “Why and how should HCPs talk to people with MS about work?” and it starts out: “Many people with MS would like to work and see it as a valuable part of their recovery. But they face a number of health and social barriers to achieving this ambition.”

The booklet reviews subjects such as why it’s important for healthcare professionals to talk with their MS patients about work, how to manage their symptoms on the job, and when and how to disclose an MS diagnosis to an employer. Though the guide is designed for medical professionals, it’s also useful for MS patients to read. It also contains lots of facts and conversation-starters.

The working numbers aren’t good

Among those facts: In Europe only 26 to 42 percent of MS patients are working, 60 to 80 percent lose their jobs within 15 years of the onset of MS, up to a third retire early and an estimated 17 percent get fired by their employers. I haven’t been able to locate comparable figures for the United States or elsewhere, but I have to believe they’re no better. Obviously, there’s a need for medical professionals to include a discussion, and suggestions, about how MS patients can handle this “workability” problem in their treatment plans.

Do you have a “workability” experience or suggestion? Please share it in a comment. The more we talk about it, the more we can improve how we all fare in the workplace.

Why can’t some MS docs communicate with their patients?

[This first appeared as my column in www.multiplesclerosisnewstoday.com]

Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.”

These posts jumped out at me:

So when my neuro says he wants me to start physical therapy, does that mean I’m going to hear a call from them or does that mean I’m supposed to go out and find my own? Just asking cause it was a week or so ago when he said this. Confused.

***

My son starts (Lemtrada) infusions Monday. Can you guys give me an idea of what we’ll need to take with him to the infusion center? And what we’ll need to have ready at the hotel? Feeling anxious.

***

I go for five days of (Lemtrada) infusions next week I’m terrified… Can someone help me with what to expect or if I need to prep or anything of that sort? Thank you.

What’s the problem?

How can it be that patients are left dangling in the wind like this? Why is it so hard for some of our doctors to communicate with us? Or is it, in fact, the “us” that’s having a hard time communicating with our doctors?

I just can’t fathom the question about physical therapy. How can any doctor suggest that a patient begin PT, but not provide a referral? (And, where it’s required, write a prescription) This isn’t something that should be left to a patient to figure out.

Regarding Lemtrada, I regularly see complaints from patients about a lack of information in advance of their first series of infusions. It seems that many neurologists are unfamiliar with Lemtrada protocols and leave it up to the infusion center to brief the patient. Yet, it also seems that not all infusion centers are knowledgable about Lemtrada. Lemtrada is a complicated drug, and its protocol requires patients to obtain and take several other drugs before, during and following the infusions.

The drug’s manufacturer, Genzyme, provides a “One to One” support program for patients but, from my personal experience, it seems a bit overwhelmed. For example, my pre-infusion information “kit” didn’t arrive until a week after my infusions had ended. Fortunately, my own neurologist was great about providing information before, during and after my treatment.

It’s a two-way street

But, here’s something important. Information flow is not just the doctor’s responsibility. We, as patients, have a responsibility to ourselves to get the information we need. And that means being proactive about it and ready with questions before setting foot in the doctor’s office. The Agency for Health Research and Quality (the lead U.S. federal agency charged with improving the safety and quality of America’s healthcare system) has an excellent game-plan on its website to help you get the most from a visit with your doctor. It’s worth a look before your next appointment.

The American Cancer Society has an excellent guide about how patients can share the responsibility for good communications with their doctors. Though it’s focused on cancer patients, just substitute “multiple sclerosis” for “cancer” and almost all of its information is appropriate for us. It also is the only resource I’ve found that provides suggestions for how to raise the communications issue with a doctor who doesn’t communicate well. For example:

  • “I’m worried that we aren’t communicating well, and here’s why …”
  • “I need to be able to talk with you about _________, and I feel like I can’t. Can we discuss this?”
  • “I realize that you’re very busy, but I need to discuss _________ with you. Can we schedule a time to do that?”
  • “I’m having trouble understanding ___________. Can you help me?”

The bottom line is, don’t be shy. Be prepared. You’re your own best patient advocate.

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?