My Hip Flexion Assist Device (HFAD)

The one thing people with MS always learn, sometimes the hard way is that no one device ever works. I don't think one will ever walk the way they did before the MS. As I learned to live with the changes MS created in my life, I tried different things along the way. The other thing I learned besides becoming attuned to exactly what is going on neurologically with my body, was what device will target the issues.

I own an Ankle Foot Orthosis (AFO), the first thing introduced back in early 2004. That happened because I started tripping sometimes on nothing visible. My toes started dropping down and my ankle ended up paralyzed. A perfectly fine ankle just waiting for orders from the brain to move. Very MS. The signals were not reaching their destination. This went on for many years and I went from a custom made hard plastic AFO which went all the way up to behind the knee (the one on the right), unfriendly AFO; to a shelf bought gentler plastic, smaller, lighter, up to the calf AFO (one on the left).

Swedish AFO
www.Rehabmart.com

Rigid AFO
www.Rehabmart.com

Then came the Walkaide, bought two years ago with help from the MS Society, charities and my best friend. This is a high tech, neuro stimulation device that does two important things, provides much needed circulation to the ankle and raises my toes, none of which happen naturally because of the paralysis. This device fits under the knee, has electrodes and sends gentle stimuli through the autonomic nervous system, since my central nervous system seems to be kaput. It took days of programing with an orthotist to fit my gait so it would work with my steps. If I walk on a straight, flat surface, it works fine. If I walk on uneven surfaces, my ankle can and has twisted. It does nothing but move the ankle and help with circulation.

My WalkAide

So, I can use WalkAide with the light AFO which is light enough to move when the toes are stimulated. I do this on uneven surfaces usually.

Now what about the rest of my leg? Great that we have circulation and moving toes but my hip does not flex and my knee does not flex. So, I have a stiff straight leg because of abnormal muscle tone. How am I supposed to walk?

My Hip Flexion Assist Device (HFAD)

Then I discovered this new thing called the Hip Flexion Assist Device (HFAD) -- by total accident. Actually the key search words were "hip flexion". I knew my leg could do a little better than it was. Well, two things: it is quite a contraption and it really works out the whole leg. There are things I like about it and things I don't. They show you a nice picture of a lady wearing it under her clothes. To do this one has to wear a tent! I tried and was so uncomfortable.

What this device does for me is provide a leg lift which I cannot get any other way. It also has a little strap behind my knee, a popliteal strap that actually helps flex the knee. I have decided to wear it over clothes, with the small AFO and use the HFAD as a workout tool. I've had it for two days now and I have one sore left leg. But I did notice today that the circulation was even better than using only the WalkAide. Of course it would be better since the entire leg is working and the knee and hip are flexing. I would never wear it to go out because not only is it exhausting to put on since it is so new, but I feel like Spiderwoman!! -- if you consider my leg hasn't moved correctly for years, no wonder the unused muscles hurt.

So, a workout tool it is and one hell of a one at that!

Stress, mobility and things MS

When one has a chronic illness, not only does one's thinking change but also the way the world looks. I have friends who frequently inform me of business meetings, adult children issues, airport delays, recent vacations (usually to hot places) and other things that are age appropriate. I am supposed to get together with one of my best friends from college who had to postpone from June to July because of new job training. Obviously I am one of the more flexible people around when it comes to schedules!

I don't have business meetings or any meetings for that matter, except my MS meeting which is certainly not the pressure of some other meetings. I also shy away from writing group meetings except the one I belong to and feel comfortable in. Things that can create stress are not things that I come near. It took the MS world a very long time to come out with a statement that those of us with MS knew for all that time that stress actually really does cause exacerbations! Who knew until many of us started dropping like flies when in stressful situations. I think the day the MS Society came out with results of an empirical study stating that stress is bad for us, many of us (mostly me) posted smart alec comments on my FB page. Now please! Stress is not good for any of us but obviously some us are really not equipped to deal with it. A little sad in a way because we should be coping like everyone else. However, we are not like everyone else.

I use the famous expensive gadget called the WalkAide for mobility. Let me tell you what I've learned about this device since I got it almost three years ago. Things that touched me deeply included the compassionate people who really and truly wanted me to be happy, that includes the facility that manufactures it to the friends and family who support my every step! We all know corporations and this is one of them who need to sell, sell, sell. The friends and family have always hoped that I would sprout new neurons to re-establish communication with my brain. That of course hasn't happened. But I have learned something else. No wonder I'm not walking like everyone expected...I have several things going on in the same leg and the WalkAide only targets one of them: foot drop. I am using a spastic leg with no hip flexion, knee flexion or ankle dorsi-flexion to walk. In other words, a stiff leg with no prayer of bending. So the WalkAide is only making my toes go up with a little ankle stability. All this is happening which is why when I climb stairs, I have to pull my hip up so that my moving toes touch the step instead of bending my knee. I have since found this at

 http://www.mshfad.com/   

The orthotic looks very cumbersome but makes perfect sense. The two straps give her leg lift, a small piece not shown behind her knee help put it in flexion and the strap on the tongue of the shoe give her ankle dorsi-flexion, or bring the toes up. This is the part the WalkAide does now. The part I like is there is no leg dragging because of the elastic straps. This can be worn under or over clothes.

Hip Flexion Assist Device (HFAD)
 http://www.mshfad.com/   

Of course nothing is simple. I need a doctor's script and a PT to supervise the fitting. At least I found this. I don't mind going around and around the barn looking for anything to make my life easier!

New addition to the family!

I have talked a great deal about my mobility issue in other posts. I have always known that there is a way to view the world without hiking or jogging or just walking! Since I live in the country and hear the creak at the bottom of our hill just behind our house, of course I want to go out there and watch the seasons pass. I have not been able to do that for over fifteen years.

Guests who come to visit usually go on hikes or long walks simply because our environment lends itself to that. It is so beautiful out there. Now, I am not particularly curious about nature but I do have an interest in the way things work. Sometimes certain trees "decide" that the timing is not right to proceed with blossoms or certain fruit trees that don't produce fruit on time. Robins come out and mate and play at the beginning of spring, just to let everyone know that it is time to welcome the new season. The grass amazes me. Sometimes overnight the shade changes and grass emerges after long winters of hardship and cold.

We always have a ramp dinner with fresh homemade pasta and herbs just peeking out of the ground every spring. We are getting ready for that now. We have collected loads of duck, bantam and goose eggs to make the pasta. Now all we hope for is nice weather. Our grass is green and the trees are slowly leafing out and the bugs have stayed away so far. But I am sure not for long!

Anyway, the reason I am describing all this to you is because now I can participate! We just bought a new Kubota buggy that goes over almost any terrain. I have gone into the woods, up the mountain and seen where the ramps come from. These are onion like foods with long leafy greens. Blanched and in boiling water for a few seconds and drizzled with balsamic vinegar to have with a pasta primavera make such a fresh welcome to spring. I can literally go places I never could before. This little buggy is four wheel drive and has seat belts, two speeds and very rugged tires. It seats two so I can take a friend along and show them our surroundings.

The best part is that I can drive it like my own car. The accelerator is a right foot pedal (my unaffected leg). The hand controls are easy to manage. It is a friendly vehicle and very stable and steady. Of course I have read the safety manual and practiced on many terrains.

Through the creak and beyond

I am so happy to enjoy life again! What a great way to welcome spring! I am so happy I could cry but I won't do that.

My new found freedom

Batik

It was around 1979 when I was a junior in high school at the Jakarta International school in Jakarta, Indonesia. We had just moved there and Jai and I had to learn a new way of life. The school initiated new students, particularly expatriates on the culture of the host country. When we signed up for classes, Indonesian language and geography was mandatory and so was learning about Batik. Batik is an art form that is found all over south east Asia as well as parts of Asia.

I still remember arriving in class to see all the instruments used in Batik making. There was bees wax and some "sticky" wax, large skillets that were plugged in to melt the wax and a number of instruments called "Tjantings" which were used to apply wax. The premise of this technique is to have a painting or drawing, which one traces with the Tjanting applying the wax, which is not as easy a process as it sounds! Wax dries quite fast but one continues to apply it until all lines in the drawing are traced. Once it is all over, the dying process takes place. When the cloth is dyed it also rinses out the wax. One painting can go through several dying phases particularly if multiple colors are used. 

Garuda flight attendants: 

(https://www.google.com/search?q=garuda+flight+attendant)

I also remember my class mates. Some were new, others had been in Jakarta for some time and were a little ahead of the game. But we all had one thing in common, painting with wax! Our instructor was a distinguished Javanese teacher who wore the traditional "Kabaya" which is a blouse whose origins go back to the middle east, the word "Kaba" meaning clothing. The kebaya is usually used for formal occasions such as weddings which show the Kebayas which can be very fashionable with rich brocade. Kebaya is a blouse, about waist length. The every day Kabaya is informal but elegant. The outfit is often completed with a floor length "sarong" which drapes around the body and shows off many batik prints. A more formal Sarong is known "kain panjang". An everyday Sarong is worn by both men and women in Indonesia.

Arjuna with traditional Sarong

My painting was the traditional "Wayang" or character from the traditional hindu epic, the Ramayana. My character was Arjuna, the brave warrior brother of Rama. Indonesia is the world's largest Muslim nation with religious influences from the Arab and Hindu worlds. All these influences are reflected by batik motifs, dress and various batik prints on tablecloths, napkins, bags, laptop cases and almost anything else.

My painting turned out very well! Wax had that ability to make mistakes look good with its delicate "bleeds" of color. So, along with all my international classmates, we all produced work that made us look like professionals! 


This table cloth has a traditional motif representing a scene from the Ramayana. These colors are pretty traditional and are used quite often. The blacks, browns and whites or browns and whites are very typical in many patterns.

Traditional table clot

Vera Bradley laptop case

Interestingly many American designers such as Vera Bradley uses designs that look very much like Batik. Here is an example of a laptop case. Although it is not Batik, the design is quite similar and more like Batik in other parts of Asia.

What a great experience it was to learn how to make a batik painting in high school. Although my Arjuna painting has gotten lost over the years, I would not hesitate to put it up on my wall if I ever found it!

My Passion...

I truly believe that if one pursues one's passion in life, things come together in a way that is simple, mindful and beautiful. Does that sound like a cliche? Think on it. If you truly believe in something, you are at your most natural and most efficient. Ideas come and make sense and maybe even make an impact. In life that is what everyone tries to make happen -- some do, others don't want to and many others try.

Lately I am getting the feeling of life going by me and that I am not keeping up. Now it is Christmas and I spent the morning in my robe! Tomorrow is another day but I want to change it from being just "another" tomorrow. I have a list of things I would like to complete -- just in time for New Year's resolutions! I have been working on a book FOREVER. It is mostly written, well about 100 pages and I just need to complete the rest. This is the interesting part but I seem to be stuck just living life. When you have MS, just living life is a full time occupation!

My book will have a different tone than everything else I've seen on MS. I just finished reading a New York Times review of the book Brain on Fire. I am carefully trying to understand what the reviewer thought of the book. Ultimately I realized that it is all about your story. But there is that part about not getting too caught up in misery, sorrow or even narcissism. So one has to carefully construct the story without making the audience slog through all your baggage. Difficult to say the least. So ultimately I have to tell my story honestly and be mindful about my MS and non MS audience.

You know what the hardest part of pursuing my passion for writing this book is? Just getting started where I left off. After about a week I've nailed it down pretty well. It is not that I am lazy or unchallenged, it is that I need to pull out the same discipline that I've used at other times in my life and just WRITE! It helps to have that goal in my mind too. A finished book with my story for so many to see and so many to possibly help understand this insidious debacle called MS.

My book consists of three parts: I. Life before MS (yes there was a life before), II. life during diagnosis and III. life after MS (yes, there is such a thing). I am stuck on part III. And this is the most marvelous part! I might be a little hesitant to write about this part because maybe I never thought it would ever come. I tell my audience how I got here through long labyrinths and tunnels. Anyone can do this, all it takes is a bit of direction or in my case just knowing what to do. People, especially young people might want to know how to live a relatively normal life because I didn't have anyone to tell me it was possible. In the process I lived through damage caused by the condition simply because I didn't know any better. In other words, how to live more healthfully, looking into research that was never reported to us instead of looking for the answer in a pill. Well, I better get to the book, time is wasting.

But as they say, better late than never!

Mindfulness meditation & my MS

I write my blog posts because it is how I can gauge my current mental and physical state. I have lived with MS for a very long time -- 27 years -- this December 25th. I can honestly tell you that life has taken me through turns, some instructive and others destructive. I am also trying to write a book about my life with MS. My book will consist of three main parts, life before MS, years after diagnosis and life after MS. Yes, there is life after MS. I believe now that my whole journey took place as I searched and searched for answers to find none. Having emerged from this long tunnel, I now am living life to my fullest. The book will talk about all the mistakes and ultimate advocacy and happiness in finding my own voice to handle some very difficult times. I have re-discovered life and am not moaning about what has been lost.

When I question my purpose for being here and what it has all meant up until now, it is to share with you my lessons. Knowing that one's MS is not like another person's MS, I speak of my own experience in hopes that everyone will have something to gain -- even people without MS!

I have come across something very interesting within the last month. Having heard over the years how only meditation will calm my mind and anxiety related to my life, I have made a wonderful discovery -- "mindfulness meditation." This is different from what you might think of as meditation. Honestly, I am not one to sit in a corner, focus on a mantra and let all thoughts leave me! That is what we all think of, right? Almost like a waste of time that I might spend doing something useful. Mindfulness meditation is not that at all.

Let me explain how it works for me.

The idea is not to ruminate. It is possible to shut out all thoughts about the past and the future by focusing on the present only. How to do this? Look at your environment, all the things around you....each one of those items can take up observation time. A cup, a pen, a plant anything...just stay present, with whoever else is around you as well. An example, friends had come over for lunch the other day. Normally, my attention is everywhere but around the table we were sitting around. I would start thinking about something that happened two days ago, something irrelevant to my company who came to be with me. I tried the exercise that I had been reading about but had not tried yet. It is almost as though I trained my brain to just be at the table. I focused on everyone there, asked pertinent questions, discussed issues that came up and was a far far nicer person! My company was very familiar with the "old" me being distracted all the time and I finally mentioned being mindful. Then the reactions came and I saw that they noticed the difference.

This article illustrates how one can really feel the benefits of this:

 http://www.sciencedaily.com/releases/2011/01/110121144007.htm

More than anything, the stress in my life is reduced mainly because I don't waste time and energy thinking about things that don't really matter. Most of it is imagined anyway. So, every minute I stay in the present is valuable energy saved!

Sometimes it can be hard to focus only on the present. There are a few tricks to stop your mind from whirling around -- for example focusing on the breath or counting to ten without other distracting thoughts intruding. Personally it is hard for me to focus on the breath but I do the counting -- starting over if thoughts come in. Most important is to not judge yourself or the situation. If thoughts come in, they come in. Let them, just know they did.

This has really worked for me. I also don't get upset about things that haven't happened yet. You may be surprised at how keen your attention really is and how you think and say things that never had a chance to come out with all the unnecessary thoughts coming in.

It is as though my brain needed something to tell it what to do. Isn't that the case with most things in life?

Talk About the Process

MS and anxiety is something that has interested me for a long time. When we talk of anxiety, we think of all the mood disturbances, psychiatric issues and such. As always different people have different things that they consider as being anxiety. Medical professionals tend to lump a lot of people into the "generalized anxiety disorder" category, or GAD. Along with this comes a host of medications to treat this, anti-depressants and selective serotonin reuptake inhibitors (SSRI). I have taken SSRI's for what we thought was a form of depression, anxiety or something like that. Sometimes I don't think even the professionals know what is always going on. I have explored this topic extensively and keep finding that the popular rhetoric seems to be that MS is a baffling condition that often  progresses so no wonder people get depressed and anxious. But we all express this sentiment in so many different ways. Let me talk about me for a moment.

I was diagnosed at age 20, in college. I was an active 20 year old, very athletic and out to find my place in this world. Then you tell me I have something I cannot even pronounce. I continued on, little broke my stride until many years later when not only my stride but my spirit was broken.

I picked up the pieces and continued on but things were not as they should have been. So I started to get anxious. But all this time, my brain was being "zapped" in certain areas that was in fact affecting my emotions. Now I think back to how I single handedly tried to bear this brunt. Almost 27 years later, I am finally devising a plan to handle the way my runaway emotions are expressed. Because of my anxiety and where the brain lesions are, I have a case of uncontrollable laughing and sometimes crying. Something inside me starts and cannot stop. This can happen at any time, anywhere with anyone. The worst part is, I am not doing this, it is almost being done to me.

We were at some friends at Thanksgiving. Someone said something that began that ripple inside me. Then I said something that in all honesty was not that funny but the uncontrollable laughing began. Something in me decided that I had enough of this behavior that surfaces only to embarrass me. So I stood up and said needed to use the bathroom and everyone assumed that is why I was laughing! I took a break in order to stop the cycle that had been started. It worked. I came back out and had no more feeling to laugh. We all started talking normally again.

The other morning we were having breakfast with friends and I practiced my mindful meditation and paid very close attention to what people were saying. By doing this, I got involved in conversation, very involved so my mind did not wander to places other than the table. If I would have felt vulnerable in any way, I would have voiced that I was getting a little anxious or just taken a walk to the bathroom or anything to break the pattern.

I have found by suppressing feelings, they come out with greater force. By either breaking the pattern or talking about the process or what was happening was an honest way of dealing with it. I don't seem to be able to get rid of this so these techniques are the next best thing.