Category Archives: Living with 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

If My MRI is Stable, Why is My Walking Getting Worse?

During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?”

Interestingly, within a few days of my exam, a Harvard Med School study was released that addressed a similar question: Is there always a link between the level of physical disability in some MS patients and the amount of lesions in the brain?

What my doctor said

My neurologist’s answer was pretty simple. Disease progression in parts of the body that are controlled by nerves along the spinal cord, such as the legs, is usually noticed by a patient physically before the progression can be seen on a spinal MRI. On the other hand, MS disease progression can be spotted on an MRI of the brain before it’s noticed physically. So, by regularly doing brain scans, a neurologist may be able to halt that progression by changing DMDs, for example, before it has a chance to have a physical impact. Doing a spinal scan doesn’t present the same opportunity.

The Harvard Med School study

Details of the Harvard Medical School study are reported in an article written for Multiple Sclerosis News Today. The conclusion of this study is that, for some MS patients, there may be no connection between the number and size of the lesions that can be seen on an MRI of the brain and that patient’s level of physical disability.

The research found that a little over 13 percent of the patients who were studied had this “dissociation” between what the scan revealed and their disability level. Some had only a few brain lesions but lots of disability. Others had a lot of brain lesions but relatively little physical disability.

According to the researchers, patients in the low brain lesion but high disability group were prone to having a progressive form of MS, more cervical spinal cord lesions, and a lower physical quality of life. The study’s authors believe this may be due to their lesions being concentrated in the spinal cord rather than in the brain, and that’s pretty much what my neuro told me about my MS.

What about MS patients with the opposite — when their MRIs show a lot of brain lesions but they exhibit few physical symptoms? The Harvard researchers suspect these patients may be likely to have cognitive problems.

Bottom line

For the study: The researchers believe that this disparity between observable symptoms and MRI results complicates a neurologist’s ability to determine a prognosis for MRI patients.

For me: The study results, combined with what my neurologist told me the other day, explain why being told for many years that “the MRI looks great” was only half of my MS story.

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

The Ogo: 21st Century Wheels for Your MS, but with a Hefty Price Tag

About a year ago, I first wrote about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either. Just bend in the direction that you want to travel, like riding on a Segway, and off you go. It could be great for someone with MS.

The Ogo is the brainchild of Kevin Halsall and Marcus Thompson. Kevin is a product design engineer and Marcus is a paraplegic. Several years ago, Kevin began trying to develop a device that would increase Marcus’ mobility. With help from Marcus, a prototype was produced. Three major design changes followed.

The Ogo is ready to roll

Now, after a lot of tweaking, the Ogo production line is ready to roll late this summer. The Ogo looks great. It seems as if it could be really useful to any of us who use a scooter to get around, and it sure looks like a whole lot of fun. But it comes with a hefty price tag of just under $17,000. (And that’s without including the cost of shipping from New Zealand, customs fees and, possibly, import tariffs and sales taxes.)

I haven’t tried it myself, and I’m not getting anything from the Ogo folks for writing about their device, but I do want to show it to you.

Take a look:

Here are some specs for the Ogo:

  • Length with footrest up: 770 mm / 30.3 inches
  • Height with backrest on: 1 m / 39.4 inches
  • Height with backrest off: 610 mm / 24 inches
  • Width: 630 mm / 25.2 inches. All terrain kit: 830 mm / 32.7 inches
  • Battery x 2: Lithium Ion
  • Battery x 2 weight: 11kg / 24 lbs
  • Travel distance: Up to 38 km / 24.8 miles on a single charge.
  • Weight: 65 kg / 143 lbs
  • Speed: 20 kph / 12 mph

If your MS means you need to use a mobility scooter, you think the Ogo is for you and you have $17,000+ that you can spare, ordering information is on their website.

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

Ocrevus, Hope and a Suicide Postponed

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay.

Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years.

Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he changed his mind.

Campbell has been writing about his MS for the Sunday Herald in Glasgow since late April. (He’s also the paper’s “Beer of the Week” writer.) He describes himself as “a man on death row,” and on May 20, his MS article began, “Well, unfortunately I am still alive.”

Campbell has mobility problems, and living in a second-floor flat has been tough for him. He says he’s had no support in getting ground-floor accommodations. He complains that he was recently discharged from a hospital without the possibility of receiving home care. He has no caregivers and exists on microwave dinners.

Campbell had hoped that a stem cell transplant would allow him to live a life that was worth living, but his neurologist told him that he thought HSCT would be too risky. So, at age 56, Campbell made plans to die.

Then came a glimmer of hope. In a column he wrote two days after he had been planning to die, Campbell explained that a former police sergeant named Rona Tynan gave him a reason to live, at least a little while longer.

“Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed,” Campbell wrote.

That treatment is the disease-modifying drug ocrelizumab, sold in the U.S. under the brand name Ocrevus. The U.S. Food and Drug Administration approved it a few months ago, and it’s the only drug approved to treat progressive MS. Some neurologists refer to it as “stem-cell lite” because of the way it attacks the rogue B-cells that are believed to cause MS. Ocrelizumab is expected to be available in Scotland later this year.

“For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting risk-free treatment for multiple sclerosis sufferers within the next few years,” Campbell writes. “The timing could not have been more perfect — although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.”

Colin Campbell’s hope, now, is that Ocrevus will halt the progression of his MS and avoid a future that he pictures as becoming bedridden, needing help to eat and bathe, and using a catheter. He’s not sure how much hope he realistically should have, but he ends his June 17 column with: “Wish me well.”

That, we certainly do.

****

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

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)

 

 

 

 

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