Category Archives: Multiple Sclerosis News Columns

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)

 

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)

 

 

 

 

Is it Time to Treat Your MS to a Scooter Ride?

To scoot or not to scoot? Is is better to drag your legs around for as long as you can or to give in and get yourself a set of electric wheels?

That decision prompted this vent on a multiple sclerosis Facebook group recently:

“I’m just wondering if anyone has this happen to them. Every time I go to the store I have someone roll up on me in their electric scooter and tell me I need to get one. Every time my response is the same “I refuse to use one until I absolutely have no other choice” and then they shake their head at me like I’m crazy. Granted I know how I look pushing my walker (which I refused to use for a long time and just clutched onto walls) and dragging my dead weight of a right leg behind me, red faced and sweating with the effort, but for now I am able to walk so I do, is that really such a bad thing?”

For many years I felt the same way as that writer. It took one tripping fall too many, however, to convince me to find some walking help. I began using a cane; first a fold-up, used only occasionally, then a nice looking wooden cane that I used all the time. That was in the late 1990s, close to twenty years after first being diagnosed with MS.

I started using a scooter in the summer of 2000, when a colleague suggested that I rent one to get around the large Staples Center in Los Angeles, and Philadelphia’s First Union Center (now the Wells Fargo Center), while covering the political conventions being held in those cities. Riding, rather than walking, gave me the mobility that I needed to do my job. I scooted whenever I was at those venues and at the the end of each long working day I parked, plugged the scooter into its charger and walked out of the convention center. Without using the scooter someone probably would have had to have carried me out.

Four years later, my wife convinced me to buy a scooter of my own. My Pride Sonic (now called a “Go-Go”) separated into 4 parts. The heaviest was about GoGo-Sport-3W-Red40 pounds so I could disassemble the scooter, throw it into the back of my SUV and take it to work with me. That gave me two benefits, I could move around our news bureau, which covered 3 large floors, faster than anyone else and I also saved a ton of personal energy.

That Sonic also came along on cruises to Alaska and the Mediterranean with my wife and I but, eventually, it became too heavy and cumbersome to travel with.  So, enter the TravelScoot. This is a 35 pound scooter that can be folded

Two scooters

With another cruise passenger in Dubrovnik

like a baby stroller. I can ride it right to an aircraft door where it’s stowed, folded in a coat closet or unfolded in the cargo bay, and it’s returned to me at the door when we arrive. I still use a larger scooter, now a Go-Go, around town and to walk our dog. (And when we go grocery shopping, my wife rides the Go-Go and I ride the TravelScoot). But the TravelScoot is, as the name suggests, primarily my travel scooter. It’s wheeled me around the ruins of Ephesus, Turkey and been “tendered” from a cruise ship onto the shore at Santorini, Greece. 

I’m not advocating for a particular brand of scooter. An on-line search will turn up dozens, at prices ranging from around $900 to $4,500 or so. And you’ll probably have to pay for it yourself. Unless your doctor will certify that you need an electric scooter to get around in your house it’s unlikely that Medicare, Medicaid or your insurance will pay for it in the U.S.

I am, however, advocating that you not allow pride, vanity or a strict “use it or lose it” philosophy to stand in the way of getting yourself some wheels. It really helped to make me more independent and it made a big difference in the qualify of my life.

—-

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

 

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.

At-home treatment studied for MS “brain fog”

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

One of the most troubling symptoms of multiple sclerosis, especially for those of us who are still working, is “brain fog”…not being able to concentrate… not feeling “sharp” when working on a task or solving problems.

So it was interesting to read about a new study that reports that patients with MS had better problem-solving ability and response time after training with a technology called transcranial direct current stimulation, or tDCS. 

During tDCS, a patient wears a headset through which a low amplitude direct current is applied to the scalp. The stimulation makes it easier for neurons in the brain to fire. The result, say the researchers, is an improvement in the learning that takes place when patients use cognitive training games during rehabilitation. And, importantly, this technology doesn’t have to be applied in a clinic; it can be used by a patient at home.

“Our research adds evidence that tDCS, while done remotely under a supervised treatment protocol, may provide an exciting new treatment option for patients with multiple sclerosis who cannot get relief for some of their cognitive symptoms,” lead researcher Leigh E. Charvet, PhD, associate professor of neurology and director of research at NYU Langone’s Multiple Sclerosis Comprehensive Care Center, says in a release on this research. “Many MS medications are aimed at preventing disease flares but those drugs do not help with daily symptom management, especially cognitive problems. We hope tDCS will fill this crucial gap and help improve quality of life for people with MS.” 

In this study, published in the Feb. 22 issue of Neuromodulation: Technology at the Neural Interface, the tDCS was targeted at the brain’s dorsolateral pre-frontal cortex. That’s an area linked to fatigue, depression and cognitive function. Twenty-five participants were provided with a tDCS headset that they learned to apply with guided help from the research team.

In each session, a study technician would contact each participant through online video conferencing, giving him or her a code to enter into a keypad to start the tDCS session. That allowed the tech to control the dosing. Then, during the stimulation, the participant played a research version of computerized cognitive training games that challenged areas of information processing, attention and memory systems.

Researchers found participants in the group treated with tDCS showed significantly greater improvements on sensitive, computer-based measures of complex attention and increases in their response times compared to the group that did cognitive training games alone.

The NYU team is currently recruiting for additional clinical trials involving 20 tDCS sessions and a randomized sham-controlled protocol, to gather additional evidence of benefits of tDCS. If you are interested in participating in one of the studies, call 646-501-7511 or email nyumsresearch@nyumc.org.

Caution: There are tDCS-type products that are being sold directly to patients, without being supported by researchers or information about how to use them. The researchers suggest you stay away from these. If you’re considering tDCS, they say, first speak with your doctor.

 

Stem Cell Treatment for MS: Can’t We Move Faster?

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

There is some good news about stem cell therapy and some that’s not so great.

A just-published study concludes that one form of human stem cell therapy is more effective at treating multiple sclerosis than the best of the MS medications being used currently.

The not-so-good news is that approval of this therapy in the U.S. still seems to be a long way off.

The treatment is known as high-dose immunosuppressive therapy and autologous hematopoietic cell transplant (HDIT/HCT). The procedure, more widely known as HSCT, aims to suppress active disease and to prevent further disability by removing disease-causing cells and resetting the immune system. During the procedure doctors collect a patient’s blood-forming stem cells, give the patient high-dose chemotherapy to deplete the immune system, and then return the patient’s own stem cells to rebuild the immune system.

Stem cell replacement is better than MS drugs

The five-year study, that was published in the February issue of Neurology, shows that HDIT/HCT can result in sustained remission of relapsing-remitting MS. Five years after receiving HDIT/HCT, 69% of the trial participants had no progression of disability, relapse of MS symptoms or new brain lesions. And some of the patients had some of their symptoms improve. This occurred without taking any MS medications after the stem cells were replaced.

“These extended findings suggest that one-time treatment with HDIT/HCT may be substantially more effective than long-term treatment with the best available medications for people with a certain type of MS,” said Anthony S. Fauci, MD, the Director of the National Institute of Allergy and Infectious Diseases.

More study needed

But, here’s the not-so-good news. In a press release Fauci continued: “These encouraging results support the development of a large, randomized trial to directly compare HDIT/HCT to standard of care for this often-debilitating disease.” So, Dr. Fauci, how many more years will that take?  Granted, the study that was just completed involved only 24 volunteers, all of whom had aggressive, relapsing-remitting MS. We know the treatment carries some risks and that many participants in the study experienced some serious, but expected, side effects, such as infections. But, five years after receiving HDIT/HCT treatment, most trial participants remained in remission and their MS had stabilized. In addition, some participants showed improvements, such as recovery of mobility or other physical capabilities. It seems as if results such as that should shift research into high gear.

Is research moving fast enough?

Why, then, do investigators seem not to have greater urgency in making HDIT/HCT treatment available in the U.S.?  “If these findings are confirmed in larger studies, HDIT/HCT may become a potential therapeutic option for patients with active relapsing-remitting MS, particularly those who do not respond to existing therapies,” said Daniel Rotrosen, MD, director of NIAID’s Division of Allergy, Immunology and Transplantation.  

To me, that sounds like several more years of study before researchers will be ready to ask the U.S. Food and Drug Administration to approve this treatment. I’m not a doctor. I’m not a scientist. I’m just an MS patient who’s anxious to halt the progression of my disease and to walk better. Do I need to wait another five years or more while “a large, randomized trial” is conducted?

Just venting, I guess. But scientists have been studying stem cell treatments for years and it sure seems as if we’re still crawling when we should be cruising.