Tag Archives: MS

Are You Doing OK?

It’s one of those questions that all of us with MS get. And it’s one that most of us with MS don’t like to answer.

How do you respond when someone asks you “are you doing OK?”

#1 You can say “Yes, I’m fine, thanks,” even if you’re dragging and defiantly not OK, and be done with it.

#2 You can be honest about how you’re feeling and open up to someone who may not really want to hear about your MS problems. Then you run the risk of that person avoiding you in the future.

#3 You can answer by asking your own question: “How much time do you have?” Then, you laugh.  Hopefully, the other person also laughs and you’re done with it. (Of course, the other person may actually want to know what’s happening with your MS. In that case, ask that person to “have a seat” and revert back to answer #2).

This “are you OK?” question recently was the subject of a thread of posts on the Facebook group “We’re Not Drunk, We Have MS.” And there were a lot of suggestions about how to answer — or not:

“I’m as okay as okay gets.”

“If I’m out then I honestly reply, ‘Thanks for asking. Today’s a good day.’ Because we ALL know of the days, if not months, we’re NOT able to be out!”

I used to tell everyone that I was good, even if I wasn’t. Since this latest exacerbation, I’ve started shrugging and saying, ‘I’m Okay.’ If the person says, ‘Just Okay?’ I will tell them the truth.”

I’ve had MS for 21 years and I always say I’m Ok, mainly because people don’t understand.”

For years my answer has been, to anyone other than a relative or a close friend, “I’m slow, but I usually get where I’m going.” But, in the posts on the “We’re Not Drunk, We Have MS” Facebook group I think I found the perfect answer:

“Ask me tomorrow and I’ll tell you how I felt today.”

It’s the truth and it seems to cover all contingencies.

How do you answer when someone asks you “Are you OK?” What works for you?

(A version of this post first appeared as my column on www.multiplesclerosisnewstoday).

Photo: Matus Laslofi

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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.

 

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.

The music of MS

[This post first appeared as my column in http://www.multiplesclerosisnewstoday.com]

You may not have heard this song, but I bet its lyrics will strike a chord.

I cannot feel my body.
I cannot feel my face.
My legs are pins and needles
and my mind is a disgrace.
I see in double vision,
so there’s more of you to admire.
Got a freaky disposition
and my soul is on fire.

The title of the song is “Mrs. Hypochondriac,” but singer-songwriter Alu’s symptoms are far from imaginary. Alu, (pronounced AY-loo) has MS. As she explains on her website: “Prior to being diagnosed with Multiple Sclerosis, I had a lot of weird symptoms that doctors couldn’t explain. People often accused me of being a hypochondriac. It was a really difficult time.” She calls the song “a story of survival — surviving a brief tumultuous marriage, divorce, and MS diagnosis.”

Alu was diagnosed with MS in 2012. Not long after that she wrote another song with an MS connection, called “Marie.” It ends:

Oh, Marie.
Life is never what it seems.
You can plan and prepare
but please beware:
Life will humble you.
Life will humble you.
This life will humble you.

Alu isn’t the only performer singing about MS. On YouTube, “Irishbear76” takes a more direct approach:

Possibly the most unique song, and certainly the most positive one that I’ve discovered, was written and performed by Kristen King. “Impervious” tells the story of how stem cell therapy changed her life:

Have you put your MS experience to music? I’d love to hear it, if you’re willing to share. Just drop a link, below, in Comments.

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?

 

 

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.