Sunday, July 14, 2013

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

Rigid AFO

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!

Wednesday, May 22, 2013

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   

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)   

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!

Thursday, April 25, 2013

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

Wednesday, March 13, 2013


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: (
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!