November is National Family Caregivers Month

When I meet people and they find out I have multiple sclerosis (MS), they often remark at my productive life. I’ll give myself some credit; I’ve done a lot in my life despite living with MS. I might sound a bit braggy right now, but my intent is not to boast. There is someone else that deserves recognition, because without him I wouldn’t be able to do half of the things I do. This person is my husband.

He helps me manage my life with MS. While I get myself ready in the mornings, he makes me breakfast and coffee. He feeds our dog. He puts together a lunch for me and puts my scooter in the van. At night, he often makes us dinner and helps me get ready for bed. There isn’t a day that goes by that I don’t benefit from his help. But no one sees these things except me, and I enter the world with no one assuming that I have this other person filling in where I fall short.

I’m thankful I have a partner to help me deal with my MS. I couldn’t do it alone. When people compliment the way I live my life, it feels good. I work very hard at it. But I think to myself, you should see the other guy. So I tell them about my amazing husband, my partner, my caregiver. I want to acknowledge him and all he does. He’s always working behind the scenes, making me appear more powerful than I am.

My MS Lately

I’ve been on a hiatus. Truth is, I haven’t been feeling very well. I’ve been hiding out. Not from others, or from the reality of my illness, but perhaps from the feelings that can take me to bad places.

My disease is progressive. So far, it’s only gotten worse. My doctor acknowledges the course of my MS. She says it’s slow, at least. And this is true. So, there’s that. It’s gnawing away at me so slowly, but with a level of persistence that is terrifying. My doctor speaks of a plateau that could exist; a comfortable place where my disease decides to stay for a while. Take a break, I think. You’ve been working so hard to destroy me. Even a short rest sounds so lovely to me, but entirely unimaginable. My disease has been progressing for over a decade. Why stop now? Giving up is weak, and this disease is fierce.

Every time I’ve sat down to write in the past few months, what comes out is so negative. A reflection of how I feel. I don’t want to promote it, but it’s not fair to hide it either. It’s not fair to deny the downs that I can experience, the emotional and physical pain that all people with MS can experience. In reality, I’m a positive person. But my life with MS is very difficult and I don’t have to hide it.

I always want my words to be helpful and meaningful for others affected by MS. And I haven’t felt that anything I was writing would accomplish this goal. Then I finally found the purpose in my sharing how I feel. I’m sharing how I’ve been feeling, not because someone wants to read that I’m having a hard time, or to bring down others, but because maybe it might help someone feel less alone. If you are tired, afraid, frustrated, or feeling lost; I’m right there with you. But I can’t stay long. I’m working on a comeback.

My Mobility Scooter

Multiple Sclerosis can cause mobility problems for some people. Unfortunately I am one of those people. I started having problems with my gait in 2004. My issues started off slow, but have progressed to the point where I can no longer walk long distances.

I started using a mobility scooter in 2011. I had been using a transport wheelchair in situations where a lot of walking was required (see The Wheelchair and Me). Although it allowed me to participate in activities I previously had to decline, I still felt limited. The transport wheelchair required a companion. I couldn’t go places by myself.

I had reached a breaking point. My limited mobility was impacting my quality of life. Something had to change. I headed to see my neurologist and obtained a prescription for a mobility scooter along with a referral to a medical supply company. After the company called to ask me a few questions about my condition, a rep arrived at my door with a scooter. It was compact and easy to navigate. I told him I’d take it and he said that was good because this scooter was mine.

I went to the library on my first trip out on my own with my scooter. Oddly, I didn’t have any anxiety about the excursion. I didn’t care how I looked gliding by on my new ride. Maybe it was the practice I’d had with my wheelchair. But I think what happened, why it was so easy to accept, was that it gave me back something I’d been living without: independence.

I’ve had to make some modifications to my home and my vehicle to accommodate my scooter. Although the particular scooter I use is designed for easy travel and can be disassembled into four parts, we had a lift installed in our minivan. I am not able to lift the separate parts on my own. Of course this was not cheap and my insurance wouldn’t cover modifications to our vehicle for accessibility. I purchased a used lift, which provided some significant savings. I was also able to get assistance from our van manufacturer. Most all vehicle companies provide assistance in the form of a rebate for accessibility modifications. Anyone interested in this assistance should check with their automaker to find out the eligibility criteria. Often cars must be new and there are time restrictions as to when the modifications must take place.

Loading the scooter into my van using the lift.

Loading the scooter into my van using the lift.

The other obstacle I had to address was how I would get the scooter in and out of the house. We have a single story home constructed at grade, so the main concern was doorway thresholds. I purchased two threshold ramps. One allows me to take my scooter in the backyard. The other allows me to go out into the attached garage. These ramps are inexpensive and easy to install. I purchased one at a medical supply store and the other online.

My scooter has changed everything for me. I can go anywhere on my own. With my scooter I can go shopping by myself, I don’t have to decline social activities that involve a lot of walking, and I even use it in the house when my legs just stop working. While I’d prefer to have the mobility that MS has taken from me, I don’t view using a scooter as a negative in my life. Missing out on activities and having limited independence was much worse. For me, the benefits of my scooter outweigh any hang-ups I ever had about using one.

Of course, there are downsides to using a scooter. I can’t always navigate everywhere I want with it, although I do pretty good in most situations. But the real bummer comes from the unwanted attention I receive from others. People are curious, I get it. I don’t mind a polite inquiry. Unfortunately, I encounter far too many people that say really stupid things. I’m still learning how to cope, but I don’t let it stop me. I’ve got places to go.

Using my scooter to explore Death Valley National Park.

Using my scooter to explore Death Valley National Park.

MS Awareness

March is designated the national month of MS awareness and education. As someone who lives with multiple sclerosis, it’s important to me to raise awareness of this disease. While I am able to adapt, to live well despite MS, it remains the biggest struggle in my life. I won’t pretend that a day goes by where I am not compromised physically or emotionally because of MS.

Raising awareness is important to secure funds for research. It’s important as people with MS continue to seek acceptance and understanding, and freedom from discrimination. Awareness is key to ensure we have access to the care we need, and can live without fear of being denied treatment because we can’t afford it. As someone living with MS, I feel it is my duty to raise awareness. I do so by sharing my story, by participating in fundraising efforts, and by giving my time and support to MS nonprofits.

Through these efforts I feel that I’m doing my part to work toward the ultimate goal of ending MS. But it also gives me a sense of community. I am able to exist among my peers. I can connect with others who can directly relate to me. And I feel comforted by these connections. I’m not alone, because we are all in this fight together.

The Love of a Good Puppy

I’m an animal lover. I’ve got two cats and a dog. They are my kids. I got my dog just before I turned 21 years old. She’s an English Springer Spaniel and I named her Sydney.

She was just a puppy when I got her. I was living alone and just under two years into life with my multiple sclerosis diagnosis. It was still a time of major adjustment for me. She’s provided me with companionship that was so critical when I was on my own. For a long time, Sydney’s was the first face I saw every morning when I woke and the last face I saw when I went to sleep at night.

Pets can provide not only companionship for people, but they also can be therapeutic. Anytime I feel down, there is this loving creature to cheer me up. Pets give us someone to take care of, a responsibility I needed during those years when I struggled through depression trying to find myself after being diagnosed with MS.

Sydney is 14 years old now. Those years have gone by fast. Overall, she’s not had any significant health problems. But she shows her age in her gray hair, a few small fatty tumors, and her hearing problems. The great part is, that despite her age, she still runs around with excitement and is playful. Sometimes it’s like she is still just a young pup.

Lately, she’s having more problems moving around. We can treat that with pain medication and anti-inflammatory medications. But she’s also losing control of her bowels. It’s as if she doesn’t know it’s happening until it’s too late. Unfortunately, there isn’t a lot we can do for this problem. The underlying cause could be her mobility issues or it could be neurological. The medications she’s taking may help, but they may not. Being the kind of person I am, I’ve done my own research and found some alternative treatment options like acupuncture and chiropractic. So I’m hopeful.

Sydney and one of the cats a couple weeks ago.

Sydney and one of the cats a couple weeks ago.

It’s difficult to watch my friend grow old. It’s hard for me to watch the confusion in her eyes when she realizes she’s gone in the house. She knows it’s wrong, but I suppose her body just won’t listen. And I know how she feels. I know the frustration of knowing what I want my body to do and it not responding. With all Sydney has given me over the years, all the love, companionship, laughs, and joy; what I can try to give her now is understanding. We’ve been through a lot together. Unknowingly, she helped me through some very difficult times in my life. Now, it’s my turn to do the same for her.

Happiness is a warm puppy —Charles M. Schultz

Comments About My Disability Test My Tolerance

For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.

I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.

I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”

“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.

“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”

So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.

Notice how the use of a camel in this photo draws attention away from my cane.  Unfortunately, not a viable solution for every day.

Notice how the use of a camel in this photo draws attention away from my cane. Unfortunately, not a viable solution for every day.

A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”

“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.

I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.

If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?

I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.

Looking Ahead to Another Year with MS

Early 2013 marked 15 years since my multiple sclerosis diagnosis. I didn’t have a flare this past year. In fact, I’ve only had a mild one in the last decade. I got my annual MRI. No enhanced lesions. Just spots. I can’t say that anything changed dramatically this year. But the progression of my MS is steadfast. Things are happening, but my MS is a slow mover. It gradually comes for me, taking little bits at a time. This past year I felt more fatigue. More drop in my foot. Slower getting around some days. Numbness and tingling for a day or two. Most of the time I feel fairly stable though. One might think that’s not enough. But for me, much of the time, it can be. I’d love to get better, but I desperately don’t want to get worse.

My fear of my MS worsening is strongly fueled by the decline I’ve experienced in the last decade. MS progression terrifies me more than anything in life. I just want it to stop. It would be nice to get better, but it can be difficult for me to imagine this as a potential reality. Reverse the damage? A cure? When I was diagnosed doctors and researchers were telling people they expected a cure within 5 to 10 years. Five years later the same thing was being said, and even now. It’s painful to hang on those words that haven’t come to fruition in the nearly 16 years I’ve been living with this diagnosis. So what I think about most days is just holding on to what I’ve got.

Thinking bigger, I do have a lot on my wish list for the new year. I want options to manage more of my symptoms. I want safer, more effective treatments for progressive MS. I want to be stable. But my true wish, the one that enters my mind and stings my eyes with tears, that wish is that someday I can live free of this disease. It all goes away, and I get everything back. I can live without all the drugs and devices I use now to get by each day. I am whole, and don’t live in fear. That is what I want for me, for everyone with MS, for everyone who loves someone with MS. I’ve heard it said in movies; It’s good to want things. Here’s to wanting it all and having hope that someday soon, it can happen.

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How I Manage Foot Drop

Foot drop is a condition that makes it difficult for a person to move their foot upward. When walking, instead of the foot flexing up, the toes and front of the foot can drag on the ground instead. Foot drop can be caused by a variety of conditions and is a common problem for people with multiple sclerosis. I began having problems with my gait in 2004. Several years later, part of the problem was identified as foot drop on my right side.

I was treated by a physical therapist who determined that I was a candidate for an ankle-foot orthotic (AFO). I was referred to an orthotist and was fitted for an AFO. At this point I was beyond excited to get some help with my foot drop. I wasn’t bothered by the idea of using an AFO. I was already using a cane and was pleased that something existed that could potentially help me get around easier.

When I went to pick up my AFO all that changed. The orthodoic barely fit into my sneaker. It was evident that I would need to wear special shoes to accommodate this contraption. The foot on my foot drop side already a half size larger than my other foot, I wasn’t pleased. What was most bothersome was that the AFO actually made it more difficult for me to walk. I sort of waddled from side to side as it was difficult for me to lift my new foreign appendage. I never used the AFO in public. I tried it around the house, but it only made walking more difficult. My balance was worse and I couldn’t feel any benefit using the orthodoic.

Soon after I saw a news story about a new device used to help people with problems like foot drop. It was a functional electrical simulation (FES) device worn on the leg just under the knee. The device stimulated the nerves sending a signal to the muscles to lift up the foot. I’d seen the ads in the MS Momentum magazine for these devices including the Bioness L300 and the WalkAide, but I didn’t really think of looking at using one to treat my foot drop. Since the AFO wasn’t working for me, this alternative now sparked my interest.

The news story led me to one of the hospitals near where I was living at the time for an evaluation. I was fitted with a Bioness L300 and experienced what was not a miracle but a huge improvement in my gait. I still needed my cane, but I moved along with significant improvement.

The evaluation determined that I was a candidate for the device. All I needed was a prescription from my doctor. And $6,200. I left that appointment and cried because I wanted that device more than I had wanted anything else in a long time. Although functional electronic stimulation devices such as the Bioness L300 are approved by the FDA, my insurance wouldn’t cover it. Luckily I was able to get financing and pay for the device with the help of several family members and my own savings.

I personally love my L300. It significantly helps my condition. Now I affectionately refer to it simply as “my leg”. I would highly recommend this device for people with foot drop.

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The Bioness L300

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Sassy and wearing “my leg”

The price tag of medical equipment can be an obstacle for many people. Here are some things to consider when trying to pay for costly medical equipment:

  • Don’t give up entirely on health insurance. Some companies will provide coverage or pay a portion of the cost. Submit the claim even if they say no at first. If they deny it, appeal it. Get a statement from your doctor and physical therapist.
  • Special credit cards like CareCredit offer financing plans with no interest for a period of time.
  • Contact your local chapter of the National Multiple Sclerosis Society. They may have small grants available or should know about other assistance programs in your area.

For a good overview on functional electrical stimulation devices for foot drop, check out the information on National Multiple Sclerosis Society’s website.

MS Drug Risks

FDA investigating case of progressive multifocal leukoencephalopathy (PML) in person who was taking Gilenya. Great. Here we go again. That was my first reaction to that news since I take Gilenya. And because I spent nearly three years on Tysabri fearing PML. I have never been tested for the JC virus that reactivates in people with suppressed immune systems causing the development of PML. When I decided to stop taking Tysabri, I did it because I didn’t feel it was working for me. I continued to have progression. But I’d be lying if I said that the risk of PML wasn’t a factor as well. Since my decision was made, I didn’t feel the need to be tested for the virus. Now I want the test. It’s probaby better to know.

At this point, we don’t know what part Gilenya played in this case of PML. The information released so far notes that the patient was on other immunosuppressant drugs before starting Gilenya, had multiple courses of steroids prior to starting and while taking Gilenya, and may have had lesions atypical of MS on their MRI. So I’ll wait for more information to come out. Read more about the case in this article.

The question I’m always asking myself with my MS meds, is how much risk am I willing to accept? I accept the risk of seizure with Ampyra. I accept the risks of heart problems, eye problems, and infections with Gilenya. Now will I need to add PML to that list? Weighing the risks of my medications versus the risks of my MS progressing isn’t that easy.

What I do know for now is that I fear MS more. I’ve experienced what it can take away. But some drugs with less severe side effects would be nice. I have enough to worry about.

Knowing Your Limitations

Do you know your limits? Everyone has them for one reason or another. Multiple Sclerosis limits my ability to do what has become quite a long list of tasks. I know what those things include. I can’t run from someone if they chased me. I can’t walk around the block, even with my cane. I can’t close my eyes while standing and not fall over. I could go on, adding all types of actions that I can’t accomplish because of MS.

Knowing your limitations is quite different. After over 15 years with MS, I’m still struggling to come to terms with mine. As I sit here writing this post, I am at home on a regular work day nursing several cuts, scrapes, and sore muscles. Why? Because as I was leaving for work I noticed the garbage can. It smelled. It’s garbage day. So, I thought, I’ll just take it to the curb. It has wheels. And as I wheeled it down my sloped driveway I went down with it landing on the pavement. I scratched up my elbow, my knee, my ankle. Since it’s the morning when I have more energy I was able to get up. I was able to put the can upright. I slowly walked up the driveway and into the house.

I wanted to go into work early today. I was off to a great start too. But now I was bloody, in pain, and in tears from defeat. One bad choice had changed the direction of my day. What did I think I was doing? Answer: What any normal person would do on garbage day; take out the garbage. The flaw in my thinking was not first asking if this was something that I should be doing.

In all honesty, it did cross my mind. Briefly and then the thought departed. The part of me who wants to do regular daily tasks without care just did it. And that’s where the problem lies. I might know what my limitations are, but do I always accept them? Clearly not.

Cleaning and dressing my wounds, I engaged in a couple hours of self-loathing. Ridiculing myself for bad choices. But if you think it’s easy to give in, to admit your inability to do something, it’s not. It may be, for me, one of the most difficult parts of having Multiple Sclerosis. I just want to go. I just want to do. I don’t want anything in my way.

I’ve adapted in so many ways to live a life with MS. Clearly I should be able to make this adjustment as well. I pledge to keep trying.