the multiple sclerosis activism foundation: news and views

patients like me: forums, personal health trackers and evaluations, tons of information

wheelchair kamakaze: intelligent personal insight into MS issues, and a heck of a photographer

broken clay journal: author katja is world traveler and a good writer, with a great ‘tude about living with a “disability.”

the reformed multiple sclerosis society: seeks to empower MS people with information on cutting-edge treatment – though heavy on the CCSVI

this is MS: a very extensive forum site – find answers, offer your experience, find like-minded people

carnival of MS bloggers: a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis

a google search of “multiple sclerosis blogs” will provide you with days of surfing. these blogs are great way to feel at least somewhat connected as we sit at our desks. feel free to share your favorites with the rest of us!

there are, of course, many others. some that i check in with seem to post very infrequently.

as soon as i saw it, i knew that i needed to have it in my collection of “how not to” books. (chief among them, “how not to die,” which comes in handy every day.) who knew that not falling was a learnable skill! why this wisdom was not an integral part of my early education, and is not offered in the curriculum of my local community enrichment programs, i do not understand. this volume (slim, i’m sure) ought to be in very doctor’s waiting room collection, and should be included in the info packet given to every newly diagnosed multiple sclerosis or lupis patient. i will admit that i have not read it (and to be truthful, most likely will not.), but just knowing that, should the skill to not fall down abandons me (highly likely), i can regain that knowledge with the purchase and reading of this little book. a google search located it on amazon, (along with “how to avoid huge ships.“and i have no doubt that it is available from other outlets. or at least it should be.

a very special friend, whom i have known since birth, was just diagnosed with some sort of throat cancer. i visited her a few months ago, before her diagnosis, and watched her struggle through bouts of painful coughing that would leave her gasping for breath several times a day, and kept her from sleeping more than a few hours at a time. i watched her wince in pain as she struggled to swallow her morning coffee. i heard recently from someone else close to her that not only had the coughing gotten worse, and that her doctor was talking about inserting a tracheal tube so that she could breathe, but that she had been diagnosed with throat cancer. her doctor apparently said it was almost definitely caused by her 40+ years of smoking. what is ironic is that she had a year or so ago quit smoking.

make no mistake, i was a dedicated smoker myself, starting in high school and continuing for 24 years, until right before my first child was born. i will readily admit to back-sliding many times, but i never re-acquired the habit again. i loved smoking, and i think it will miss it forever. i once even thought that, since i was already stricken with this crippling disease, what further harm could there be in taking up smoking again. but, try as i might, every puff not only set off alarm bells through every nerve in my body, literally paralyzing me where i sat for several minutes, but it also triggered a little voice in my head reminding me that smoking was perhaps the stupidest thing i could do. the disease i have to live with has nothing to do with my behavior – at least i can take some solace in the fact that i didn’t cause this.

and i would marvel at people who choose to smoke, and wonder why they would do such a thing. but i understand all too well why. i made that choice several times a day for more than 20 years. but from my perspective here, now, in my wheelchair, i watch people in otherwise perfect health light up and wonder why. back in high school and for many years afterwards, i believed i was invincible, i knew that disease would never touch me. i have had to face up to the hard fact that i am not (and actually never was) invincible, and that smoking cigarettes was, and still is, perhaps the stupidest thing i can do. there are a multitude of preventable diseases – most of them painful, many of them fatal – who’s primary cause is the continued inhalation of clouds of carcinogenic smoke. don’t get me started, because i could go on and on. the most cursory glance at the internet will cough up more information on the make-up of cigarette smoke than anyone can bear.

thought i do not want to become one of those annoying people who accost others and rant about the horrors of smoking, i ask for this slice of your day to remind you of what you already know, somewhere inside you – that smoking cigarettes is one of the stupidest things a person can do to themselves.

there, i said it. i will climb off my high horse, and return you to your regularly scheduled programming. thank you for your kind attention.

the catch 22 is that i got these leg braces, to help with my foot drop – sitting by themselves, they look a bit like prosthetic feet:

i even bought new shoes to accommodate them (kudos to zappos for making it SO easy, maybe easier than going to a real shoe store. they have the most amazing customer service!) and despite my misgivings, they really do work. when i can manage to lift my foot, the braces do help clear my toes and swing my foot out. i know that i need to walk more to excercise my legs and start to regain some of the strength i’ve lost over the years.

the problem is that when i do more walking, i have to lean on a walker, and i end up with close to excruciating pain in my arms – shoulders, elbows and wrists – which is bad enough and stays with me so long that it makes it hard to sleep. the only way to avoid the pain is to walk less, and so lean on the walker less, though even a little bit of leaning on my arms hurts. and i spend more time in my wheelchair. which means, obviously, that i am walking less, using my legs less. the more i walk, the easier it will become, but more i walk, as a consequence of having to lean in the walker, the more pain i am in. and around it goes.

there is probably some sort of middle ground where i’d be walking/leaning just enough to keep my lower half working without my arms in such pain, and spending the rest of my time in a chair – with or without wheels. and i suppose the more i walk, the stronger my legs will get and the less i’ll have to lean on the walker. there’s a still point in there somewhere. i have not found it yet. i am seeing my neuro next week, and will investigate some sort of PT that might help both my leg strength and my arm pain.

knowing that all of you are so deeply fascinated with the minutia of my life, i will keep you up to date with each little development….

• i got my freaky looking leg orthotics. they look a little like artificial feet when they stand in the corner sans shoes. my DW took me out shoe shopping, to find something not too geeky that would accommodate the orthotics and my big huge feet. we found something (i NEVER thought i’d be wearing boat shoes, but my hip daughter turned down my offer to allow her to make fun of them so i guess they are not too bad), but after wearing them a little, they hurt my feet. so i ordered a few pairs from zappos – abusing their offer of free shipping both ways. hopefully one will feel good and not look too horrid, and i can send the other two pairs back. despite my misgivings, they really do help, and i am looking forward to finding shoes that fit them.
• my test of the injected baclofen didn’t go exactly as planned – what we had been led to believe (and hoped) would be a day in the hospital turned into an overnight, with a few attendant unpleasantries that i won’t go into (can you say “straight cath?”), i think i would call the test successful and, while i don’t think i am going to get the pump, i did learn several things that i would never have known otherwise. like, i had no idea there was so little strength in my legs, that i was relying so much on spasticity and rigidity to keep my legs from crumpling. i will freely admit to the fact that part of my reluctance to getting this thing is the whole idea of surgery and having to spend a week in a rehab hospital bed getting the dosage adjusted – not a pleasant prospect. and in the face of a possible trip to florida in march, and another to switzerland in july, i think it prudent to wait until after all that to delve into getting any implants. maybe that’s just rationalizing, but i’m sticking with it.
• i’m hoping that the deal biogen idec has with the patriots ($100 to the national MS society for every completed pass) will continue into the post-season.
• a little cross-polinization, i am endeavouring to post a new image every day to my photoblog, captured light. they might not all be brilliant ( i am limited by the fact that i am, for the most part, housebound), but i hope you will at least take a look and maybe even subscribe.
• and hoping that 2012 brings each and every one of you lots of wonderful surprises and wishes come true. i hope to hear from all of you (or at least some of you…) in this brand new year.

i tried the “WalkAide,” system, and found it remarkably effective. the only reason i didn’t pursue it was that i would need two of them (one for each leg, obviously) and they are rather expensive, and insurance does not consider them worthy. i drove home from my appointment that day singing “if i had a million dollars…”.

i am also going in to get evaluated for a baclofen pump – again, against some misgivings on my part. i have no doubt this thing will work – i take baclofen orally and find it very effective, but the idea of having this hockey-puck sized machine implanted into my abdomen (not that i’m concerned about the bulge, as there is plenty of me in there to hide it), and a catheter implanted into my spine, is not a pleasant one. the idea of surgery of any kind makes me, as my daughter says, oogly. and of course, the idea of any messing around with my spine adds to the oogle-factor.

and even though there are something like 50,000 of these things in use, i am hesitant to rely on a little machine that i have no control over. if the thing malfunctions, there’s nothing i can do about it on my own. and sudden baclofen withdrawal sounds pretty unpleasant.

when i comes down to it, i’m just a big baby. i can get through a colonoscopy fine, but i’ve never been cut open before, and it just makes me break out into a cold sweat just thinking about it. i know, so just don’t think about it. yeah, right. i’ll check back in if i survive.

“ah, it’s not always easy…”

one thing

that is always easy

this slow slide

into disrepair and disfunction

not easy to watch

from inside or outside

not easy to uderstand

or identify

but easy to do

this something

slowly turns my brain

into nothing

all by itself.

but – and while i try not to dwell on this, it persists in residing in the back of my mind – it might just as likely turn out that i arrive at my destination feeling as bad or worse than i feared i would. that has very rarely been the case, but nevertheless, the uncertainty is always there. i am looking at two trips upcoming that, at the moment, feel rather daunting, even though they are both trips i dearly want to be able to make. i am very thankful that there are people either accompanying me or waiting for me at the destination who are aware of my “condition,” and whole heartedly offer their support and assistance.

it has been said by other people living with multiple sclerosis that they would almost rather have cancer, since at least with cancer, as terrible a disease as it is, there are reasonably well-defined diagnostic tools, a predictable course that the disease is likely to follow, reasonably well-defined courses of action to take, and even the possibility of complete cure or remission. with MS, there are none of those things. MS is difficult to diagnose initially. and once a diagnosis is confirmed, it is difficult to define at which stage in the progression of the disease one is – is it relapsing/remitting, when symptoms can appear and disappear unpredictably, or primary progressive, when there are no new symptoms, but no remission of existing symptoms, which will continue to slowly worsen over time. secondary progressive is defined as progressive neurologic decline between acute attacks without any definite periods of remission. the lines between these stages are fuzzy. it’s all subjective, relying on the person with MS and his/her neurologist to make the determination. and even when everyone agrees with what stage the person is in, it cannot be decided with any certainty. there are no objective tests.

this uncertainty comes into play most directly when the team is trying to come up with a treatment plan. different so-called “disease-modifying agents,” are used in different stages, and a wide range of symptomatic treatments are put into play at different stages. treatments that are effective in the relapsing/remitting stage might have less effect in secondary progressive MS, and have little or no effectiveness in the primary-progressive stage. in fact, as far as the FDA is concerned, there are no approved treatments for primary progressive multiple sclerosis. new drugs usually get tested for both relapsing-remitting and primary progressive disease, but none of the treatments seem to be effective in the primary-progressive stage.

add to that the concern shared by many in the MS community that “big pharma,” and perhaps some insurance companies, make their choices on the research and development of new treatments based more on their own financial bottom line than the possible benefit to people with the disease. there are treatments – low-dose naltrexone (LDN) for example,  that have shown remarkable anecdotal results in not only stopping the progression on the disease but in actual improvement of symptoms – something which no other treatment even suggests the possibility of. but LDN is very inexpensive, and therefore, if through clinical testing was proved to be effective, it is fully conceivable that both the drug companies and the insurance companies would take substantial hits to their bottom lines. people would be able to move from the “approved,” and very profitable medications onto an inexpensive medication that, in a best-case scenario, would allow the patient to move away from some or all of the medications being used to treat specific symptoms. a less medication-dependant patient, while she might be better off, is less profitable.

there is the option to buck the system – to take command of our own health and insist on (and pay for out of pocket, if we can afford it) access to some of the unproven therapies, like LDN, and risky treatments like CCSVI, more than likely against the wishes of the medical establishment and quite possibly our personal care-takers.

in the end, life itself is filled with uncertainty. i don’t in any way mean to play the “poor me,” card here, but those of us living with chronic illness – and, dare i say it, especially those of us living with multiple sclerosis – face each day with a degree more of uncertainty than others.

now available from the amazon kindle store – a new novella by yours truly! go to the amazon kindle store and search for “johnny slide.” your reviews are always welcomed!

i stole this from a post on facebook – if i knew who made the original, i’d give them credit – i did not create this. but, that said, i would urge you all to search out and patronize local crafters this holiday gift giving season. at the very least, shop local independent merchants – book stores, music stores, art galleries, give gift certificates to local restaurants – be creative and make the effort to support your local economy. better yet – make gifts: give the gift of time, make some holiday treats in your kitchen, etc. if there is nothing available in your neck of the woods, take a look at etsy, a great online source for handmade gifts of ALL sorts. make this holiday about more than just spending money – make your spending count.

thanks, i’ll get off my high horse now.

(i add this just to see if i get more hits via search engines:)

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.