If you have read my posts, you know that keeping my MS a secret has been a critical goal of mine. Unfortunately, my walking has deteriorated to where I can no longer hide it.
The first colleagues to notice were told that I hurt my knee or ankle. That bought me a little time, but could only be used as a temporary excuse. This evolved into saying that I have a bad leg and it’s acting up. That’s true.
When it wasn’t getting better, I got more questions of what was wrong with it. I tell people something along the lines of not being sure what caused it, but that it appears to be nerve damage. This is also true. It has the added benefit that while nerve damage can heal, it takes a long time typically. I don’t know how much extra this bought me. Maybe a year or two?
People have also noticed the antenna attached to my shoe for my Bioness unit. It’s prompted a number of funny inquiries like “what is that? are you under house arrest?” “are you a child molester or something?” At that point I explain the bad leg, nerve damage and the therapy device that I am wearing to exercise it. The typical reaction is to tell me about their father who had drop foot, their brother who had a spinal cord injury and uses a similar device or the story of how they used to go to physical therapy for their “fill in the blank”.
In a way, it’s a little bit of a relief not to have to completely hide it. So why not just come clean and tell everybody that I have MS?
Two reasons. The much less significant reason is that I still want people thinking of me as me, and not that guy with MS. Being known as the guy with the limp isn’t great either, but maybe it’s a little better.
But the biggest reason is to protect my job and income for as long as I can. As I’ve mentioned in other posts, I work in a very competitive shark tank. MS can cause cognitive issues in some people. Someone will eventually look it up online and read that. The truth is that I have been lucky and haven’t suffered that particular symptom at all. In fact the MRIs of my brain look very healthy and I still consistently rank well in any mental measure that I can track. But eventually I am bound to say something in a meeting that may not be exactly sharp, and I am worried that someone will jump to the conclusion that it’s my MS, when they wouldn’t think anything of it otherwise.
So for now, I have a bad leg with some nerve damage.
Six weeks into my four week trial, I have decided to purchase the Bioness L300 Plus. Is it a magic pill that cured my MS? No. But possibly second only to finding a great MS doctor, it’s the best thing that I have ever done to treat my MS.
First, the $$. My insurance denied it. This was no surprise. They will approve it for spinal cord injuries but not MS. Since I am getting the thigh unit as well, it will cost approximately $11k out of my pocket. They offer 0% interest for 18 months, but that is still a lot.
For me at least, it is totally worth it.
With the device on, I can walk close to normal again. For some period of time each day, I can walk completely normal. Eventually the fatigue catches up and overpowers the benefit. I expect that over time it will take longer to hit that point as my endurance and strength continue to come back.
It is critical to work with a physical therapist who is familiar with the unit. We tweaked and made fine tuning adjustments to the unit each of eight sessions in my trial month. Each time made my walking a little bit more natural and easier. The one month mark was a dramatic improvement over day one.
It has turned back the clock at least a few years on my disability. It has also added back considerably to my quality of life in that it actually feels good to walk again. Two months ago I dreaded just walking from my house to the street as it had gotten so uncomfortable and awkward. Now I love going out for longer walks again. I avoided taking my kids to the park. Now I can’t wait to go with them. Cub Scout hikes were something that I feared. Now I am excited to go on them with my son. I intentionally park my car farther away in parking lots from my destination so that I can get a little exercise now.
I was favoring my good leg so much that it was causing pain in my hip. Also, my bad leg was hyperextending at the knee causing pain there as well, and who knows how much damage. Both pains are completely gone.
It has truly turned back the clock for me.
When my disability started to progress, the first thing to go was my ability to walk heel to toe and eventually to walk in a straight line at all. I dealt with my compromised balance by gradually adopting the wide stance walk. A few days ago, I was excited to yell to my wife to check it out! as I walked down a thin line on our floor with hardly a wobble. I can even do the heel toe thing again. It’s the first time that I have been able to do this in a couple of years.
I know that it’s not a cure. My disease will continue to progress. But at least for some period of time, I feel like my old self again.
The first step in getting a Bioness functional electrical stimulation (FES) unit is to go through a free assessment with one of their reps. It lasts about an hour and is performed at a nearby physical therapy facility. The purpose of the assessment is for you to try it out, get your questions answered and see if it might work for you. That last point is very important. As I mentioned in my last post, insurance doesn’t typically cover FES for MS and it is quite pricey.
I first tried the unit with just the lower cuff that is worn beneath the knee. I then added the thigh band with the contacts set up to stimulate my hamstring. One very important item to note: If you have difficulty walking because of weak hip flexor, this is not going to help you. My left hip flexor is a little weaker than my right, but only slightly.
I went to the assessment with hopeful optimism. A review of Bioness’ website and youtube showed numerous before and after videos that are downright miraculous. They show people struggling to crawl along with a walker or stand unassisted, that can then amazingly walk normally with the Bioness. Several of the transformations are so dramatic that it is hard to believe they are not fake.
As a refresher, the Bioness L300 Plus has four components: A sensor in the heal of your shoe that triggers the cycle, a cuff worn just beneath the knee which delivers an electrical shock to your shin causing you ankle to flex upward, a band on your thigh which sends a shock to either your quadricep or hamstring, causing contraction and a remote control to turn the unit on and off and adjust the intensity. All four communicate wirelessly. I wore the thigh unit on my hamstring as I have a problem with reduced control at the end of knee extension, sometimes even resulting in hyperextension.
What was the verdict? Mixed with a tilt toward positive. It wasn’t magical. I didn’t instantly go from limping to running. However, there were some real positives. First off, walking was much easier. Before MS, I didn’t have to think about walking. Over the last year, I’ve increasingly had to consciously think about each movement in a step. Push off, lift leg, lift toe, put heel down, roll to toe etc. Mentally, it is very tiring. I was thrilled that with the Bioness taking over some of the steps, I could go back to walking without having to think about it so much. This helped tremendously with my endurance. Also helping was that the Bioness made it easier to walk in a more even gait. It was eye opening to me just how much I was favoring my good leg. This caused the limp along with some hip pain. With the Bioness on, I was placing the weight much more evenly between my two legs. My walking wasn’t normal, but it was more even, less painful and overall easier.
The bottom line…. I’m still not sure that it is worth $10k yet, but the assessment was positive enough to warrant spending $1k for a month to see.
Would you intentionally subject yourself to electrical shocks if it helped you walk better?
My internet search for an aid that can help me walk better and continue to hide my disability led me to something called functional electrical stimulation, or FES. These are devices that you wear on your leg which provide shocks to your leg muscles, causing them to contract at the appropriate point of your gait.
With my MS, the signals to and from my leg muscles are disrupted at a point in my spinal cord where demyelination has occurred. Since the signals are not coming through normally, the muscles are not triggering normally, resulting in weakness and reduced coordination.
There are two leading devices on the market; Bioness and WalkAid. Both work similarly. Both have their loyal advocates and critics. I will attempt to describe their differences, as I see them.
The first difference is with the Bioness L300 Plus. Both devices have a cuff which is worn just below the knee and induces dorsiflexion, preventing “foot drop”. However, the Bioness Plus also has a band that goes around the thigh assisting with control of the knee joint. Oddly, it can only be worn to stimulate the quadriceps OR the hamstring, but not both. I would have thought that they would have made it to stimulate both at the appropriate stage but they didn’t, at least not yet. Both devices are expensive and insurance typically doesn’t cover them for MS. So you are looking at ~$6k to start plus ongoing supply costs. Adding on the Plus thigh unit for the Bioness bumps you up to almost $11k. That’s a lot, but is it worth it?
Bioness has a heel sensor that is worn inside your shoe that tells the computer when you are starting your step and when you are putting your foot back down. The walkaid has a motion sensor in the unit that measures the angle of the lower leg to determine the point where you are at in your stride. What is the significance? One fewer piece to the walkaid and the ability to go barefoot. However, the Bioness may work a little better if you are not walking forward, i.e. stepping sideways, or if your walking speed varies a lot.
The Bioness is more attractive in my opinion. It just looks like a more advanced modern product with the notched cuff and low profile electronic unit. The walkaid looks a little less finished and has an ugly pack strapped on it.
The battery pack, while not attractive, does have a functional advantage. The Bioness has rechargeable batteries that must be charged every night (they last approximately 12 hours). The walkaid just uses a single disposable AA; much more convenient.
The Bioness has a small remote control that can fit in your pocket to turn it on/off and make intensity adjustments. The Walkaid requires lifting up your pants leg to turn the unit on and off directly.
Summarizing: The WalkAid is one unit which can be worn barefoot, no remote, has disposable batteries and is triggered by the lower leg angle. The Bioness has a heel sensor and remote that work wirelessly, must be recharged every night and has an optional thigh unit.
Bioness will let you try it for a month for $500, $1000 if you need the thigh band as well. Some distributors of WalkAid will let you try it for two weeks for free.
For me, the choice was easy. My knee control is compromised and the addition of a thigh unit made a big difference and thus, the other factors irrelevant. Bioness wins round 1.
As mentioned in recent posts, my disability has progressed to where I often have a noticeable limp. After a fair amount of research online, I have settled on two potential aids to help with my gait; an AFO and FES (functional electrical stimulation).
AFO stands for Ankle Foot Orthosis. Most AFOs are L shaped braces that have a plate underneath the foot attached to some type of post secured to the lower leg. This provides some support for the ankle. There is also a KAFO that extends to the knee as well.
Many people with MS develop a condition known as foot drop. With foot drop, weakness in the lower leg makes it difficult to lift the toe while walking. This can cause a plopping down of the sole once any weight gets put on the heal. Worse yet, it can cause tripping over one’s toes making normal walking difficult. The AFO keeps the ankle more rigid which in turn helps lift the toes while stepping.
AFOs can range from a few hundred dollars or less, all the way up to ten’s of thousands. The majority of top AFOs seem to run between $200 to $700. If it would help me walk more normal, it would be well worth it. To boot, insurance will often cover the cost of an AFO.
A quick search on Amazon found that I could buy one for only $25, no prescription needed. As an added plus, I was able to find a black one that would enable me to wear it conspicuously at work while wearing a dark suit. I ordered one just to try it out.
It actually helps.
My leg is more solid and stable with the AFO. Interestingly, it helps my knee the most. I have some weakness in my left knee. Standing up, it now hyperextends a little. After standing for a while, it starts to hurt. Because of the angle of the “L” of the AFO, my knee does not hyperextend while wearing it. This helps with my gait and really helps with my endurance while standing.
I would like to invest in a better quality AFO; one that is custom made to fit me and optimally provide the right support in the right places. My physical therapist has recommended that I see a local orthotist.
All of this having been said, there is one thing that bothers me. If I am wearing the AFO most of the time, will I begin to rely on it, causing further atrophy and weakening? I’ve been told no by someone. Granted, he was looking to sell me a $7k one. I’m skeptical.
The other solution under consideration should take care of this concern. That will be the subject of my next post.
My walking and balance are deteriorating. Unfortunately, at a fairly quick pace. While my MS is still a secret to all but my closest family, the end of that is starting to be in sight. My walking has a limp that varies from slight to crippling. To date, I have gotten away with telling lies when I am asked by coworkers why I am limping. However, I can’t claim to have hurt my knee exercising the night before etc. forever.
I am still strongly of the opinion that public knowledge of my disease will negatively impact my job, career and earnings. So my task then is to try and walk as normal as possible, for as long as possible.
That having been said, my wife has presented me with another perspective. I am not going to be able to hide this forever; maybe not even for much longer. She felt that I should focus on functionality as much as possible, not necessarily on hiding it as long as possible. It was hard to argue with her. While income is important, so are things like going on cub scout hikes with my son and playing in the park with my daughter.
So how do I improve my walking and have a more natural gait with greater endurance? I have thought of a few things. First, I tried ampyra. But it didn’t work for me. Secondly, I signed up for physical therapy. Working with a physical therapist, we will focus specifically on trying to maintain as normal of a gait as possible. Lastly, regrettably, I have decided that the time has come to consider some type of assistive device.
Luckily, there are a variety of options available for me to try. In the upcoming posts I will be telling about my experiences with a brace and with electrical stimulation. Stay tuned!
Or how I dropped 25 pounds this year and have kept it off.
The title line of get in shape in the gym and lose weight in the kitchen is attributed to my MS doctor. That was her response when I explained my success with my weight loss this year.
This will be a lengthy post because the topic always raises many questions in conversations. Let me start out by saying that I wasn’t fat at all, so 25 lbs is really significant for me. Like many in our forties, I was just starting to get a little squishy around the middle. Now I am almost skinny again; the thinnest that I’ve been since high school!
How much does diet affect MS? Personally, I think that the jury is still out. Many swear that they have had phenomenal results by focusing on a particular diet. Yet you can find two people that claim the same success with diets that seem almost opposite. One might claim that a super low fat vegetarian diet is the key. The next claims a high fat diet is the key. I don’t know. I think that diet is important for your health, the same as it is for anyone, regardless of MS. I don’t think that changing your diet will magically cure most people’s MS.
My wife and I played around with the Paleo diet with limited success for the last few years. We had challenges sticking to it for any real period of significance. Then I found a book on amazon that sounded interesting called “The Perfect Health Diet” by Jaminet.
I can’t say enough good things about this book. I started following the philosophy of the book at the beginning of the year and have steadily gotten in better shape. I have not bounced at all. In fact, I hit a new low this morning, ten months into it; down over 25 lbs. More importantly, I feel great, am never hungry and have been very healthy this year, apart from my MS.
Don’t think of it as a diet. Think of it as your new way of eating for life. The book is a flexible, livable version of Paleo. The theory behind the Paleo diet is that over time a society becomes optimized for a particular diet through evolution. It makes sense in a way. If I can function better on the food that is available, I am more likely to kill you, steal your mate and have offspring.
The Paleolithic period lasted 2.6 million years. More than long enough for evolution to play it’s part. Then we learned how to farm and our diets changed dramatically. Given enough time, eventually human society will be optimized for our current diet, but it just hasn’t been around that long yet. The book offers a variety of evidence attempting to back up this theory that we are still genetically “programmed” or optimized for the caveman diet.
The book is over 400 pages but can largely be summed up in the sentence “Eat plants and animals”.
What’s different about this book and a lot of other versions of paleo is that you can and should eat some starches. White potatoes are good. Sweet potatoes are good. White rice is ok (interestingly, better for you than brown rice). This has made it so much more sustainable for me than low carb diets.
You can also eat cheese, provided it’s the real stuff. Wine and most alcohol in moderation is ok. Coffee and tea is good. Fermented foods are good. Nuts are good but peanuts are bad. Fish, beef and lamb are great, pork is good, chicken is ok. Chocolate is ok. Corn and beans are bad. You can sit down to a nice steak and vegetables with butter and a glass of wine and enjoy it, knowing that you are actually losing weight on it.
The biggest part of your diet will be vegetables but you will still eat more fat than you think that you should. The women that I know that have tried this struggle with that. They just can’t get thier arms around eating a quarter pounder with no bun instead of just a salad if they are trying to loose weight. The diet is not meant specifically to be gluten free, but it is.
What can’t you eat? The big one is bread. Cut it out of your life. All of it. No toast, pizza, muffins. Eat your last one now and then never again. I’ve done it, you can do it. I still go to fast food places often. It’s just that I get my burger protein style, which means wrapped in lettuce instead of a bun. At Chipotle, I get a bowl instead of a burrito. McDonalds doesn’t serve protein style so I use the bun to hold the burger but rip it off bite by bite. Also, all of the soda that I used to drink has been replaced by iced tea.
I’ve got three of my six pack back already and on my way to finding the rest (which has been lost for 20 years). The only negative is that I need to pay to have all of my suits tailored as they all hang on me like tents now. For what it’s worth, four of my colleagues are also now following the book with similar success.
If anyone has questions or wants more information on the subject, please feel free to post here or email me through the site.
Best of luck to any of you that get the book and decide to give it a try! It’s changed my life.
I’m not sure if any other MS inflicted have experienced this…..
Going to bed at night is sometimes an uncomfortable experience. For me it’s a combination of two things; my neck and my leg. Somehow, I developed arthritis in my neck. It tends to get more sore as the day goes on. My leg on the other hand, still has the original tingling, in varying intensity.
Adding the two together means that some nights, I am laying in bed trying to fall asleep while my neck is in pain and my thigh feels like micro fireworks are going off in it. Not the most conducive to drifting away into dreamland.
The morning though is an entirely different story. By then, my neck feels good. And oddly, the tingling is very gentle and slight. It actually feels good. Really good. Kind of like the sensation you feel when stretching or even getting massaged.
I’ve always been bad about repeatedly hitting the snooze button. This isn’t making that habit any easier to break. Luckily the little ones ensure that I don’t get to enjoy it for too long in the mornings. What will I do to get up when they become teenagers though?
One big positive that has come out of having multiple sclerosis is learning to appreciate so many things that I used to take for granted. When I went for my last run, I really appreciated the fact that I could still do it, knowing that it wouldn’t be long before I couldn’t anymore.
I hadn’t ridden a bicycle for years and kind of thought that I wouldn’t be able to, given my balance issues with my MS. When my son got a new bike from santa claus, my wife encouraged me to get one as well so that we could go riding together. I was skeptical. We went to a local REI store and I was shocked at how much a decent new bicycle costs. It seemed a bit risky to spend so much on something that I might bring home and immediately realize that I can’t use.
However, just like with the running issue, I decided that I had to give it a try. If I assumed that I couldn’t, and later found out that I could have been riding with my kids for years but just didn’t try, I would be very upset. So I anted up and brought home the overpriced but very fancy bike.
I am so glad that I did. It turns out that I don’t really have an issue with balance at all. Just with walking. The MS causes weakness and reduced coordination in my leg that effectively causes balance issues. But in reality, my sense of balance is fine. The problem is just in my leg’s ability to follow directions from the brain that is the problem.
When you ride a bike, at least recreationally around the block with your son, your legs don’t really get involved much in keeping it balanced. It’s mostly your arms and shifting your upper body. Both of which are mostly unaffected by my MS. To my surprise, while I have a hard time standing and walking without wobbling like a drunk, I have no problem with balancing on a bicycle at all. What a wonderful discovery!
Yet one more thing that I appreciate being able to do, ten times as much as I would have pre-diagnosis.
It’s been more than six months since my last post. I’ve just been really busy. But it’s time to dust off the keyboard again.
What’s happened in the last six months? Not a lot new with my MS, actually. Just a little more progression with the disability. The focus has really been on my family and my job.
My MS is still a secret to all but my closest family. But that secret is getting harder to keep. I now wobble and stumble quite a bit more. I am sure that to some onlookers, I must look like I am drunk. When walking a short distance, such as across the room, I can still hide it ok if I concentrate. For longer distances, it becomes a little more difficult. It starts to become obvious that I am not walking in a straight line. Steps have also gotten a lot harder. Again, if it’s going up five steps to enter into a building, no problem. But if it’s hiking up a few flights, it is difficult. Not impossible. Just difficult.
I have had a few instances of colleagues commenting on my limp. I have handled it by lying, claiming an injury.
The disability is not consistent. There are days that I hop out of bed and feel pretty good. There are other times where I am dragging my leg behind me like a log. Fatigue is the biggest factor in how well I walk, by far. Oddly, standing in place such as in a line, is more fatiguing and affects my walking more than walking itself does. My theory is that to stand balanced requires many tiny correcting signals from the brain. When you have MS and the transmission of the signals is challanged, I imagine that the number of corrective signals goes up considerably. Exhausting.
I am still on Gilenya and tolerating it well. It is super easy to just pop a pill each morning. I’m not sure that it is helping, but it is easy. The next wonder drug on the horizon that my doctor is already mentioning is Ocrelizumab. The exciting news with this drug is that it’s phase III trials look promising for primary progressive MS, a version of the disease where there is currently no existing approved drug treatment. They plan on applying for FDA approval early next year.
I adopted a version of the Paleo diet. The jury is still out, in my opinion, of just how much diet can help you with MS (beyond being healthy in general), but I did shed 23 lbs on it and feel great. That warrants a post of it’s own.
My plan is the same. I hope to keep working as long as I can. Hopefully forever. As before, that means there is little reason to bring up my affliction with coworkers. They will pick up on it soon enough. I work in something of a shark tank. I don’t need any of the other sharks questioning if I am all there from a cognitive perspective.
I promise not to take another six months to post. I have a few topics stored in my head to write about so please stand by.