DEVELOPING A BODY OF KNOWLEDGE

I have recently been encountering some health issues and in the course of the last year have been referred to, and consulted with, six medical specialists. My question to all of the specialists was fairly simple and straightforward, namely ; “Are these symptoms the result of the muscular dystrophy, or are we dealing with another health issue?”  Not one was able to give me an answer. Not one appeared to even understand my question. Not one had even the vaguest knowledge about muscular dystrophy. Not one made any attempt to find out more about the condition (despite my providing a detailed report weeks prior to each consultation). Not one of them really examined me. Perhaps they thought that muscular dystrophy was contagious!  Not one has come back to me with more information or ideas despite my specifically requesting such. Many words come to mind, most of them unprintable in this magazine, so perhaps the most generous would be “clueless”, albeit a very, very expensive clueless.

I was presented with various solution suggestions, with each doctor believing their solution to be the correct one, and not taking into account any of the other variations. The gastroenterologists felt it was definitely intestinal related, the neurologist thought it was definitely neurological, the dietician felt it was definitely diet related, and the physiotherapist said it was definitely body posture related. The neurologist recommended a further specialist, a spinal surgeon, but since he was already talking surgery one didn't need to be a rocket scientist to realise what the diagnosis was going to be. I tried contacting the National Health Laboratory Service seeking a recommendation for a doctor who was familiar with muscular dystrophy, but drew a complete blank there. It would all be amusing if it wasn't so serious.

I came away from these consultations feeling very disappointed, dissatisfied and somewhat disillusioned. It bothers me that such a wide ranging group of medical specialists had such little knowledge about muscular dystrophy. It was as if the dystrophies are alien diseases, never encountered before. This led me to reflect on the fact that we have an extensive amount of information on the supposed causes of the disease, yet very little of the day-to-day effects the disease has on each of us. Knowing the causes of muscular dystrophy is a bit like being given the winning lottery ticket numbers, after the lucky draw. The information is interesting, but ultimately quite useless. It would be far more valuable to know how to live with muscular dystrophy, and what to expect as one ages with the disease.

In my search for a solution I took to browsing the Internet disability discussion forums of which I am a member. There are a number of them, mostly privately owned and managed. New Mobility, PowerQuad, Wheelchair Junkie, Wheelchairdriver, and Apparalyzed to name but a few. The last, Apparalyzed, is certainly the finest example of a disability discussion forum and is run extremely well by Simon Roulstone.

What is interesting to note is that they mostly serve the spinal-cord injury (SCI) community. I have searched high and low for a muscular dystrophy discussion forum and have yet to find such a beast. The SCI discussion forums contain a wealth of information covering accessibility, employment, health, recreation, relationships, medical information, all with an international perspective. In the past I have made use of these forums to educate myself on various matters associated with disability (mostly assistive technology) would have allowed me to make far more informed decisions than would normally be possible. As with all things Internet one has to navigate around some of the comments, but the positive and valuable information far outweighs anything negative.

I cannot help but think that we, the muscular dystrophy community, are missing out on a similar opportunity to help one another. The formal medical profession does not seem to have information about how muscular dystrophy affects, or will affect, us on a daily basis. There appears to be no cross pollination of data within the different profession's, and no database which can readily be called upon to source information.

Perhaps we are the ones who should be developing a body of knowledge, in the form of a dynamic and accessible discussion forum. This would be open to anyone around the world, whether you are an MD sufferer, a parent, in medicine/health care, research, accessibility technology, etc. In short, anyone and everyone who either has, or is associated with, muscular dystrophy.

The recently promoted “HealthUnlocked” website is an attempt at creating a muscular dystrophy connected discussion forum, but unfortunately its format is unwieldy and impractical, which perhaps accounts for the fact that there have been no new posts in the last two months (compared to Apparalyzed which averages about ten new posts every day). The key is the use of a bulletin board format which encourages easy and active participation, organises the content into logical groups, and allows access both via a computer or a mobile phone. Internet usage is increasing rapidly in South Africa, while the cost of access is tumbling. It is in fact one of the few expenses which is going down each year. These opportunities and the range of benefits they offer are now, quite literally, at our fingertips.

Hopefully my comments will trigger some communication in this regard. If forums such as those mentioned above can be funded by private individuals then there must be an opportunity for a similar format to be established by one of our institutions in conjunction with advertisers who can make use of the online exposure.

SAVE MY SOLE

There is a revolution taking place in the footwear world, a sort of “Arab Spring” for feet. The belief is being put forward that the idea of confining our feet within tight fitting shoes belongs in the past and that our feet need to be set free and allowed to take their own shape. Dozens of new minimalist running shoes designed to allow feet to move more naturally and uninhibited are hitting running stores around the world. For the past 30 years or so, most training shoes have had a good amount of foam cushioning, a steep heel-toe ramp angle and, often, some kind of structure or device to control over pronation (Over-pronation, or flat feet, is a common biomechanical problem that occurs in the walking process when a person's arch collapses upon weight bearing).

So what is minimalist, or “minimal-drop”, sometimes referred to as “barefoot” shoes?  Specifically, the new-fangled shoes have less cushioning and are thus lower to the ground than traditional everyday trainers, and, of course, the new shoes are much lighter. Those are the primary criteria that many bio-mechanists and medical professionals believe allow the foot to move more naturally and, thus, allow the rest of the body to set up in more efficient running posture from foot to forehead.

At the forefront of this concept is a company called Five Fingers, which probably should be called Five Toes, but anyway….. their shoes resemble a glove for the foot, with each toe being encased individually. They certainly are eye-catching if nothing else, resulting in people doing a lot of staring at their feet. Now personally I would love to own a pair of Five Fingers but unfortunately my 10 toes seem to have 11 minds of their own. They resemble the starting gates at a horse race, where all the entrants mill around but none of them want to go into their own starting gate. Fortunately there are other manufacturers such as Kigo who produce similar products, but use the more conventional open shoe design. Merrell, New Balance and Vibram or other well-known brands at the forefront of this technology.

So what, I hear you cry, does this have to do with someone who has spent the last 39 years unable to stand, let alone walk, or run?  Well, my interest is prickled by the minimalist nature of these shoes. For me it has always been about the sole, and the fact that there was always too much of it. I need a shoe to cover my feet, and keep them warm and dry. Anything more than that increases the bulk, and the weight, which ultimately leads to an uncomfortable item of clothing. Two great big lumps at the ends of my legs.

I finished my school years with my shoes in virtually brand-new condition despite my actively dragging them along the ground in my wheelchair, as schoolboys are want to do. My first pair of sport shoes, a pair of Olympics, in a trendy two tone brown colour (!) lasted for over 15 years until the stitching on the uppers began to come apart. The soles had barely a mark on them.

Some boots are made for walking, and that is what they do, but some of those boots just have too much rubber underfoot making them heavy and cumbersome. The trend some years ago towards ultra-thick soles sent me into a shoe purchasing decline, but this new change of heart in the industry has opened the way to purchase lightweight and low profile shoes. Not that I'm about to do an Imelda Marcus impersonation, but this really is shoe heaven for me!  After years of searching through racks of huge cumbersome and ungainly footwear we now have the manufacturers falling over themselves to produce the lowest profile sole combined with the lightest upper.

So if you are someone, like me, who has no need for bulky shoes and thick soles, come, let’s hold hands, er… feet, and join the revolution!

CORNERWAY HOUSE, Plettenberg Bay

The Garden Route along the Cape’s south eastern shoreline is one of South Africa's most enjoyable travel destinations. The N2 snakes its way from the coastline towns of Stilbaai and Mossel Bay through the Tsitsikamma Forests and along to the famous surfing beaches of Jeffreys Bay. There are places to see, views to enjoy, things to do, and food to be eaten all along the route, provided of course you can find wheelchair accessible accommodation.

In the region east of Plettenberg Bay lies a destination known as The Crags. It is home to numerous well-known attractions such as Monkeyland, Birds of Eden, Jukani, and the Knysna Elephant Park, to name but a few. We normally stop in briefly, en route elsewhere, at the Peppermill Café for my “Eggs Benedict” fix, but during a recent visit we decided to give this area more attention and take the time out to enjoy each attraction to the fullest extent. All of them are wheelchair accessible, although some require assistance over rough ground and through the natural forest environment. All that was needed was to find suitable accommodation in order to spend a couple of days in The Crags. Easier said than done. After contacting a total of 15 B&Bs, and holiday lodge style accommodations, I was not able to find a single one which was wheelchair accessible. I even contacted the local informal tourist bureau, who in turn made enquiries on my behalf, but nothing was forthcoming. Of course, as so often is the case, there were endless reasons why there was a lack of accessible accommodation, but none of them hold water in this day and age.

What I found particularly annoying was the fact that the attractions were accessible, but not the accommodation. The cart was being placed before the horse. I don't know whether there is a co-ordinating management structure for the region. If there is they need to get their act together. I cannot help but compare The Crags complete lack of vision with the far more intelligent view shown by the Robertson Wine Valley. They have a wide selection of wine farms seeking to attract visitors. One way of encouraging those visitors to spend more time in the valley is to provide suitable accommodation, and to enable disabled visitors to enjoy the valley they provide wheelchair accessible accommodation. This has proved to be very successful and there are a number of accessible B&B in the Robertson Wine Valley. It is not rocket science, it is common sense, but then we know that that is not so common.

For our holiday we therefore had to extend our search for accommodation a little wider to include the nearby town of Plettenberg Bay. There still were not very many choices available despite this being a long established tourist destination, but we were able to find a suitable B&B. What was The Crags loss, became Plettenberg Bay’s gain, and a very pleasant and enjoyable discovery it was.

CORNERWAY HOUSE is very well located within the town of Plettenberg Bay and provides a high level of accessibility, ranging from the paved parking area and paths to the spacious bedroom and bathroom, with easy access to other areas of the house. The interior of the house was directly accessible from our room and is all on one level, including the dining and lounge areas, although there is one step down to the exterior breakfast area which is used when the weather is fine. The ensuite bathroom is unusual in that although it does not contain the usual collection of grab rails (although these might well be added by the time this article was published) it is remarkably disabled friendly thanks to its spacious nature and the layout of the shower, handbasin, etc. In fact, I found it more friendly than most of the establishments we have visited.

Add to this the welcoming and accommodating nature of Robin, Dee & Kathy who run CORNERWAY HOUSE and one is provided with an excellent base from which to explore this area of the Garden Route. Highly recommended, and certainly on our list for a repeat visit.

CORNERWAY HOUSE

Tel:         044 533 3190

Email:    info@cornerwayhouse.co.za