Your Ad Here

Multiple Sclerosis Search

Custom Search

Thursday, 10 September 2009

Here we go again

After a busy summer which included a holiday for good measure, things were on the up and up until that fateful day I decided to enjoy myself and found it compelling to push myself ... perhaps to far. The result of my over-enthusiasm was a stumble which resulted in some damage to my shoulder, which is still trying to heal but I feel the healing process is not really committed to performing its assigned task. However, shortly after his injury, I incurred another (mainly because subconsciously I probably felt that I had not injured myself enough and could do better if tried a little harder). This I achieved with a high degree of success by pushing myself down some stairs. The technique I employed was the "sudden absence of one leg required for walking down stairs"!

I joke about it now, but this is happening more frequently than I would like. In practice there is not much that can be done to prevent it from happening. Suddenly, or through a wanton act of gross complacency on my part, one finds that a normally reliable limb will refuse to perform its bio-mechanical function.

I have no solution to offer, except do not let complacency into your life, especially if you have MS. Complacency will injure you and can kill you.

Furthermore, as we (in the northern hemisphere) approach the winter months we will notice the seasonal changes in more marked ways than many other people. We have inadvertantly become living barometers, and will experience relapses and flare-ups of old damage.

To my fellow sufferers, please take care of yourself.

Thursday, 30 July 2009

Results are in ... I win!

Once again, its been a while since my last blog but the reasons are good. Some posts ago, I spat feathers - no, I spat the whole chickens, to be sure - about the fact that Health and Safety was used as a means of circumventing the Disability Discrimination Act, in an attempt to re-evaluate my compatibility with current employment. Without waxing too much lyrical on this, I was livid. I was furious, mad and not going down without a fight. In fact, failure was not an option ... how dare this person even contemplate doing this.

I can now report back and claim victory. After some correspondence between this person and the specialists that look after me, I was given the all clear by a more senior member of staff and the verdict returned was "No further action to taken on Michael's disability". This is the result I hoped for because it would permit me to continue doing the job I enjoy doing.

So with all this being resolved a great deal of pressure was suddenly removed. Unfortunately, this is where a problem surfaced, a problem I experience all too often before but never in connection with my MS. I am a workaholic. "Yeah ... hello ... my name is Michael and I am a workaholic! At first I used to work harder once or twice a week, and I found I enjoyed it so much that soon I was working harder and smarter upto 5 times a week"!

I usually stay pretty healthy and "undiseased" while I work, but fall ill too all manner of illness during the first week of all my holidays. Thus, while the pressure and stress is piled on, I am fine and fit, but once it disappears ... I get ill and fall to pieces. Guess what? Once this issue was resolved, the stress was gone and I got ill. I really do love the curve-balls life throws at one.

After the latest illness/flu, I am once again back in circulation and ready, willing and more than able enough to give everyone a hard time. It's what I live for, and when the intended target fights back then I consider this the cherry on top.In this sense I abuse virtually eveeryone I know, but it performs a few vital functions. Firstly, good intelligent heckling pushes your mind and forces you to think faster and more creatively. Suddenly, you are firing neurons and using parts of the brain that may be fairly idle during normal daily activities. Heckling, with intelligence, awakens or reawakens these areas. Secondly, I use heckling as a means of measuring my mental abilities and agility. This allows me to identify any mental performance issues early on, and thus permits me to focus on them.

While I heckle, I can evaluate my speech and determine my response time. I know this is not nice towards my friends, but without knowing it, they are helping me to survive. The brain is certainly the most remarkable organ in our body. Use it, re-use it, and abuse it

Kindest regards

Tuesday, 14 July 2009

Things are looking up and up and away

Nonquantifiable (a quantum mechanics term) is the best way to describe my last two weeks. The highs have been awesome, helped in part by the smallest pill in my arsenal of medication. The lows have been few but I managed to hide them well, in my humble opinion. The last thing I want is sympathy etched on the face of every person I meet. Frankly, I find this somewhat irksome and off-putting. I believe my sense of humour and living for the moment allows me to tackle all things thrown at me with a certain je ne sais quoi. I would love to bottle this quality and give it to all my fellow sufferers, but ... alas ...this is simple not possible.

However, I can impart my techniques for dealing with people and this alone may guide you to finding your own way. My method is simple, almost child's play ... and yet ... it's effect is neither diminished nor fleeting. The plain and simple truth is that people do not know how to deal with you as a sufferer of MS. Why? Ignorance! Perhaps, but this may be unfair to them. "Why?" you may ask! Simply because MS is so different from one person to the next. This is where you come in! Your task is to educate the people you meet about your specific difficulties, and always do this with a wink in the eye and a smile on your face. If they see you coping with it in a particular way, then they will accept it and cope with it a likewise fashion.

Never hide the fact that you have MS. It is nothing to be embarrassed about and ashamed of. You have done nothing wrong, like perhaps peeing in your neighbour's garden, to get MS. Throw off all inhibitions sooner rather than later, because eventually you will have to as time progresses.

This is all easily done and, with a little practice, it becomes easier and easier but do not become overbearing and force it down each and every throat you come across. There is nothing worse than being bombarded by a relentless attack of MS information. Be dignified about it, in fact, a little dignity and decorum goes a long way to empowering yourself and enhancing your interaction with those you meet.

Finally, a sense of humour is a necessity. The more you laugh and have an edgy sense of humour, about yourself and everything around you, the more people will respect you and want to be around you. We have MS, so what! We can still be the life of the party. Find a groove that suits you and your temperament. In my case it was a quick wit, lateral thinking and the ability to heckle people and deliver all this with a cheeky grin on my face. I therefore, get away with much more than I possibly should, to be sure, I should probably be locked up if only to save society from me. I don't know of any other person aged 35 who could get away with calling a retiring ex-marine a "punk", and still building a professional and good relationship based on this. My point is that this is only possible if you are engaging enough and do with the right amount of respect and cheekiness.

The way you deal with the world around you DEFINES you, and whatever else you may have is incidental.

This is how I have handled myself even before I was diagnosed with MS, and it is still the way I deal with things now. MS has not slowed me down, in fact each and every flare-up or relapse increases my stubbornness to not let this demon take me. The last two weeks were fraught with numerous instances of speech incapacities, walking difficulties, aches and pains. Pills help, but the greatest pill is in your mind. Leverage the power of your mind and you will find hidden treasures and an awesome arsenal at your disposal. My recent adversity was almost overshadowed by the elation I am feeling at getting two kittens on Friday. I so longed to have a pet and now it's happening and the excitement is rushing through my body like a super-charged virus. Fewer pills but more endorphins, which were produced by ... you guessed it ... my mind and body, made all MS related issues seem inconsequential.

My fondest regards to all of you who read this blog. Thank you.

Mike

Sunday, 28 June 2009

Stage 2 - Walking problems

Having hoped that my speech would be the only manifestation of the impending flare-up, I can now safely state that this is not the case. After a particularly heavy week, everything seems to have been placed on hold, but once the stress died away, I was hit by a collection of symptoms. I usually find that the first days of any holiday I take are pretty much given over to coping with all manner of flu's and sicknesses. I guess I am just lucky that way. It's not easy keeping all health issues at bay until I have time to fully enjoy them and make the most of them. I say that I get annoyed by this is perhaps a gross understatement, but I digress. I do find tangents somewhat fascinating and pursue them with alacrity.

Anyhow, back to the original narrative! These symptoms hit me with celerity on Friday evening. Any plans I had for the weekend had to shelved as the old issues reared their ugly heads, very much like a hydra. Walking became a painful exercise which I thought would be dealt with by a few Nurofens. I am becoming well acquainted with a plethora of pills, unfortunately they are quite temperamental and only appear to work occasionally, and never the occasions when I need them to work. Oops ... another tangent. The mind wanders happily and I let it.

After the nurofens, walking was still an issue, perhaps not as painful as before but 2 new symptoms surfaced to challenge me further, namely lack of balance and severe slurring of speech. If you had seen me in this condition, it would have been so easy to argue that I was drunk. The sad truth is that I had nothing to drink. Perhaps I am a cheap date!

I was unable to fall asleep, mostly because of the "pins and needles" all over my body and perhaps aggravated by both the pills and coffee. Yes ... I know that coffee is bad and will keep you awake, but I needed this fix. I was starting to strangle one of the light horsemen of the apocalypse due to the pains, discomfort and coffee deprivation. It was ugly, but I think Pestilence will make a complete recovery.

These flare-ups are, frankly, tedious. Today's bonus is a headache accompanied by its lifelong spouse, double-vision. Kindly, they left their children, nausea and neck-pain, at home wit a child minder. Thank goodness for small mercies. I will take this on the chin as usual, and try to make the most of it. Let us see what else my MS has in store, because if this is it, then it is not particularly ambitious.

Thursday, 18 June 2009

Here we go again

I have lost count by now, but my speech is going all over the place again. The words seem to tumble out of my mouth in a rather haphazard manner. The added dimension, which I find strangely yet humorously intriguing, is the plethora of accents that these random words assume.

The day starts with a rather "over-the-top" almost embarrassing German accent. The W's are pronounced as V's and the other letters of the alphabet are subjected to a similar undignified torture.

As the day progresses my speech switches to a heavy Yiddish accent followed by a distinct American drawl. This change is not as severe as it sounds. It's the lunchtime antipodean accent that causes the most trouble. Why? Because this is the time that most people try to contact me by phone, and it is they who think I am poking fun at them! Normally, this would not be an issue, in fact, I usually enjoy poking fun at everyone given half a chance, but my antipodean accent is so heavy and ludicrously bad, that the mere sound of it offends most people. Compared to me, Crocodile Dundee speaks the Queens English.

By mid-afternoon I have still not exhausted my repertoire of accents and I proceed to inflict on anyone who cares to listen, a lilting Irish accent. This accent I find deeply embarrassing because, quite clearly, I am not Irish.

On particularly good days I may even subject my audience to a really bad French and/or Italian accent. With such a bewildering array of accents at my disposal, I may get into serious trouble.

I have therefore decided that should I need to say anything, then I will need to say in Latin. I may offend my fellow Classicists, but they are few and far between and thus easy to avoid unlike all the other population groups mentioned above.

By the way, this piece was written in an Oxford accent! Hopefully I will wake up tomorrow morning sporting an Italian accent and thus make myself a decent cup of coffee.

Wednesday, 10 June 2009

Sincerest Apologies

I do apologize most sincerely for not posting anything for a while. Due to an increased workload and various committments, and the fact that I mislaid my soap box, posting has been somewhat less frequent. This was compounded by the fact that nothing serious had happened since the last posting, except for the rather "happy but devil-may-care" attitude I have had towards everything of late. I suppose I could blame the new drug that I am on, however, this may be unfair.

I did read the volume of side-effects that this drug may or may not have. What really annoys me is that all the side-effects are listed as "may or may not", thus "you may or may not experience weight gain" which is immediately followed by "you may or may not experience weight loss". Does anybody else think this is as ridiculous as it sounds? Frankly, this leaves you with no options either way. In the same volume the following appears, "you may or may not experience an increase in appetite, you may or may not experience a loss in appetite, you....". For this reason alone, I cvall it a side-effects volume. It "talks" much but "says" very little.

It must be said that I have experienced a substantial improvement since taking this drug, and it is also "soft-core" as opposed to the more "hard-core" Amytrypteline.

I will keep you updated on this. Promise!

Wednesday, 27 May 2009

Thank you

In the first instance, I want to thank everyone for their support with regard to my previous posting. I genuinely appreciate this support.

In the second instance, I have had the clinic appointment I spoke of a few weeks ago and discovered that the strange sensations of hot and cold and not being able to tell the difference at times, was not something unique to myself nor was it only in my head. It appears that these sensations are share by many MS sufferers, which is a mixed blessing. The problem here is that nothing can be done about it as yet. Who knows what the future holds, perhaps hormone treatment or surgically implanting a thermometer. In a weird manner, I am looking forward to seeing the solution to this quandary ... and yes I am marginally warped in my outlook on life, but fascinated by such things.

Some of the other symptoms such as the increased pins and needles, the brain pain and the occasional jerk (the reflex and not the person) can be tamed through the use of various drugs. I was prescribed one of these and after a few days I can report that the effects of this beauty can cause vanilla to fly abroad to mascara where the top speed is a barmy 35 degrees Celsius and the dessert is sprinkled with bits of a belt sander usually turned and angle of 45 degrees every 2 years to prevent an increase in pension contributions.

So ... it the previous sentence has warped your mind, then good .... because this is what it feels like to be on these drugs. But I have found out the reason for this ... namely ... wait for it ... everything is out of sync and the way to bring everything, sharply, together again is by consumption of vast quantities of strong coffee followed by a red bull chaser. Once you have picked yourself up off the floor you will find yourself in a Nirvana. Suddenly your mind takes control of the random thoughts and quickly files them where they ought to be and everything makes sense again. I believe the caffeine overload helps, unfortunately it does not last.

These drugs do complicate the world a little, and can cause blips in concentration which result in numerous lost trains of thought. So be careful and be aware of this. But most importantly, these drugs do help. Some of these drugs are usually prescribed to alleviate depression, however, as a smaller dose they prove to have other benefits with perhaps only a hint antidepressant.

One definite benefit I discovered was a dramatic improvement in the quality and quantity of my heckling. To the mind and soul, this can only be good for me.

As always, take care and strengthen your mind.

Friday, 22 May 2009

Health and Safety versus Disability Discrimination

I have Multiple Sclerosis and, as such, my conditions varies day by day. Most people are aware of this and adjust accordingly. The nature of my job necessitates working away from my desk at times, for which I am unrepentantly thankful, and on occasion may require me to ascend a ladder or transport moderately heavy items. In this instance moderately heavy may justly be defined as anything slightly heavier than a laptop and and slightly lighter than 2 laptops. I find the laptop scale a useful means for measuring weight, however, I fear that I may be in the minority on this one.

During periods when my MS does not impede my mobility, this is not an issue and I happily continue with my work (with a song in my heart and a whistle upon my lips), however, when my mobility is questionable then I do require assistance. Being an adult and capable of making quantifiable risk assessments, I would not perform tasks I was unable to perform. This decision has been taken away from me, in the first instance, and I have been forbidden to use ladders (even though I have had the required ladder training within the last year), in the second instance, and furthermore, I am unable to perform my duties based on someone else’s opinion.

It has thus been argued that I require an assistant in order to complete my duties, which is a falsehood, and that the cost of such an assistant would not be feasible for my employer. Thus, it is argued, as I pose a serious and unacceptable risk in the fulfilment of my duties, under the Health & Safety guidelines, it would be in everyone’s best interest to assist me in finding employment elsewhere. In other words, "we don't like your kind around these parts!".

Hence, my disability (and not my amply proven ability to perform the work) is being used to highlight the risks posed by me on the employer under the H&S Act. Clearly, my employer is treading on dangerous territory here, and what's worse is that they have annoyed me. If their intention is discover what they can do to prevent exacerbating my condition, then just say so. However, the way that they chose to deal with this is exacerbating my condition. These silly letters and opinions exacerbate my condition. Decisions about me, and my future, without involving me, exacerbate my condition. All these exacerbate my condition. I wish they would just let me get on with doing what I am brilliant at, namely my job!

The point about this post is to warn any disabled people about a looming menace,with ferocious teeth, a bad haircut and crossed eyes. Health and Safety is a must. Compliance with the Disability Discrimination Act is a must. The DDA will protect you from virtually all unfairness, but H&S will be your Achilles Heel. Unscrupulous employers seeking to shed staff may resort to H&S to circumvent the DDA. Be careful! Here are some very useful links.

http://www.opsi.gov.uk/acts/acts1995/ukpga_19950050_en_1
http://www.opsi.gov.uk/acts/acts2005/ukpga_20050013_en_1
http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068
http://www.healthandsafety.co.uk/hsw.htm
http://www.hse.gov.uk/legislation/hswa.htm

Wednesday, 20 May 2009

Not all pain!

Not all Multiple Sclerosis symptoms are accompanied by aches and pains, in fact, most of them are not. Most symptoms are, however, accompanied by some degree of discomfort and/or awkwardness. Most symptoms are of the type "Oh ... um... that's strange!Is it supposed to do that or feel like that?!" The signals get garbled, and then things do the unexpected.

I have stated the MS is an adventure, however, it is not always a pleasant one. Focusing on the negatives would be all too easy, but this is true of virtually all disabilities or illnesses. This way madness lies, and so too the path towards depression. Depression is destructive and can be treated. MS sufferers should speak to their doctors about depression an soon as possible and try to establish whether they suffer from it. It requires the sufferer to be very honest with him/herself, and seek treatment if they are diagnosed with depression. This diagnosis must be done by a professional of the medical society.

I have spotted from numerous forums and news groups that a variety of medical, non-medical and illegal drugs are used within the global MS community. These are used to assist with anything from sleep disorders to bladder control. The variety is absolutely staggering, but not one mention was made of Viagra. From personal experience, I can understand why but it is also very reassuring or should be for males in general.

Most importantly, fight depression. It affects you and those you love or love you. Its dangerous and destroys anything in its path, indiscriminately.

Tuesday, 19 May 2009

Midnight Discomfort

So ... There I was! Lying on my bed, covered by my favourite blanket, blissfully waiting to be engulfed by the sweet embrace of delicious sleep. My body started relaxing, and SUDDENLY it started! A familiar and uncomfortable sensation. It usually starts in the feet, slowly and deliberately moving towards the shin, then steadily crawling towards my chest. Surely this has to be some kind of bug or creature that found its way under my blanket ... so my next move is to leap out of bed - with much caution because the first time I did this I almost killed myself-, fling back the blanket and proceed to finding the intruder. However, as so often before, nothing can be found. There is no bug. No bedbug, no flea!

The midnight discomfort feels like 1000 ants decided to go on a midnight march, using my body as an obstacle course. It is not painful at all, but it is ticklish and itchy. It is tortuous and prevents me from sleeping. I have tried blocking it out, but failed dismally. Having another shower does not help either. The only thing I have not tried is sleeping with a sackcloth blanket.

Any suggestions on dealing with this will be most welcome.

Monday, 18 May 2009

Powers of Observation

I am always stumped by the incredible display of some remarkable powers of observation by people who know me, and are aware that I have Multiple Sclerosis. I have often been "challenged" by some remark such as "Are you having trouble walking today?" after clearly seeing that such is the case as I was approaching them. One response from me was "No ... not really! I am trying out my new cool walk. Do you think it looks OK?"

I am not bitter about anything, even though my responses may portray me otherwise, but I do get annoyed and I love delivering response such as the one above. My philosophy has always been "accept and educate, be harsh in delivery but not in demeanor!". The delivery of the above response, or similar ones, should always be accompanied by both a smile and a mischievous twinkle in the eye. Of course, if you have or had Optic Neuritis, then this twinkle is already permanently there. All jokes aside, I try never to be offish or aggressive. Firstly, it is unnecessary; and secondly, it is highly unattractive. The comments should have enough of a sting to tell people that such comments are not appreciated, especially after hearing it from virtually everyone you met that day already. The responses should also not be too harsh, because you could find yourself not only alone but also lonely.

Hone your skills on siblings and family members, before assaulting the public with your verbal venom.

Tuesday, 12 May 2009

Clinic Visit

Firstly, I would like to apologize for not posting sooner, however, family commitments had to come first.

As my next clinic appointment rapidly charges towards me, I dread sitting in the consultation room. I consider myself extremely fearless, and I have absolutely no issues with blood nor do I have issues with needles. In fact, I watch intently as they plunge a sharpened pipe into my arm and claim that all I will feel is a tiny scratch. Whom are they kidding? A scratch! I do not have doctor-or-nurse-friendly veins; in fact, it dramatically highlights the experience, or inexperience as is often the case, of the vampire drawing the blood from my body ... perhaps this is somewhat dramatic, but the point I am trying to make is that drawing blood is an art and a skill which many practitioners have not mastered. I consider my self lucky in that I know of 3 people, out of the plethora of vampires, who have the unique ability to withdraw blood while meticulously avoiding each and every pain receptor. Unfortunately, these three are not always available, and when this is the case then I do dread having blood taken.

As I have already mentioned, my veins are rather shy and therefore require one of two things, namely experience or innovation. In the absence of both, I have found myself at the mercy of someone with a sharpened implement who decided to insert said implement "in the vicinity" of a vein, and then failing to find this vein proceeds to wiggle this sharpened implement in my body in an attempt to separate the meat from the bone. With any luck this does not happen and they eventually find a suitable amount of blood and stop. The result of such activity is an arm that hurts and a bruise about the size of a compact disc.

Where experience is found wanting, innovation is required in finding suitable veins for "milking". One nurse was particularly noteworthy for this. On a day when my veins were particularly reclusive, she decided to simulate taking my blood pressure - without actually measuring the pressure - which caused my reclusive vein to become more lively and pronounced, whereupon she inserted the torture device into the proper place without inflicting pain. Should you find yourself in a similar venous predicament, then remember this trick and suggest it to the perpetrator.

Unfortunately, some veins deliver blood in greater flows than others. "All veins are equal, but some veins are more equal than others!" Thus the blood obtained from a weak vein is as good as that obtained from a good vein, however, it will take longer to fill the vile vial if a weaker vein is used.

This, neatly, brings me to the next point. This particular clinic has the habit of withdrawing blood by filling numerous vials. The sight of roughly 2 dozen vials that must be filled is enough to make anyone question the motive of the person withdrawing the blood. In total, this amounts to less than the pint withdrawn from blood donors, with one caveat. When blood is donated, the flow of the withdrawal is reduced thereby causing a minimum upset to the system, whereas the blood flow is totally uncontrolled and rapid during my clinic appointment. This is perhaps an exaggeration, but there are very definite differences in the approach.

Occasionally, a visit to the physiotherapist for a physical evaluation is required. The physiotherapist will subject you to numerous tests based on sight, sensations, balance and reflexes. They are useful if you pay attention, because here you can determine for yourself whether new problems have developed or old ones have resurfaced or been aggravated. This is equivalent to having a "road worthy" test being done on you if you were a car. I particularly loathe these tests because they inevitably discover some malfunction that did not exist the day before, or they discover that an old malfunction is no longer present, and presume that it has been corrected, whereas the truth of the matter is that this particular malfunction decided not to rear its ugly head on the very day that I am supposed to see the physiotherapist.

This, unfortunately, is the nature of MS. It is unreliable! Things can change dramatically from one day to the next and moreover, to observers, these dramatic fluctuations in your health and abilities may appear as an act. The uniqueness and peculiarity of the symptoms and manifestations of MS, from one individual to the next, certainly adds justification to such perceptions and makes the task of convincing the observers that much harder.

I hope this helps everyone who has to deal with the monthly and/or weekly draining of blood. Keep a positive attitude about this. Furthermore, these nurses and doctors are trying to help us and everyone has to start somewhere to gain the required experience. Think of it as a community service, whereby you are enabling a novice to gain the required experience to make it easier for other patients to have their blood withdrawn.

Thursday, 7 May 2009

Something new

Seldom am I surprised by my Multiple Sclerosis, however, recently I encountered something new. Thrilling is quite possibly the wrong word to use, but being able to experience a new sensation does have its benefits. The principle reasons for this is twofold: Firstly, it implies that some part of your anatomy - which had functioned normally - has now ceased to do so and may inject some more excitement and challenges into your life, not that this added inconvenience is particularly desirable. Secondly, it keeps you on your toes because the worst thing that you could possibly become is complacent about the aches, pains and inconsistencies of your body. Be vigilant!

What I had experienced was strange. I shower as often as possible, and usually the temperature I set for the shower is "particularly warm indeed" as opposed to "hot" or "just add seasoning". I enjoy my showers ... absolutely ... and I was doing OK ... until I placed my hands under the fall of water. While the remainder of my body was luxuriating in the warm embrace of falling water, my hands felt as though I had recklessly immersed them into a kettle of boiling water.

I have mentioned, in a previous post, my periodic inability to determine changes in temperature; however, in this instance I had experienced an extreme in only my hands, whereas the remainder of my body sent continuous reports to my brain that everything was just fine. I therefore proceeded to confirm that I had set the shower at the correct temperature, thinking that perhaps I had set it too high and may require some plastic surgery, but ... everything was set correctly. So, as I had never experienced this before, I now classify this as a relapse and not a flare-up.

This incident clearly highlights what many MS sufferers experience, namely, that the nerves function but not reliably. The signals your brain receives are either muffled or heightened, and this could change from one to the other in a very short timespan. Making judgement calls on either your body or your environment, based on such unreliable information, is difficult and potentially dangerous. This is MS trying to get the better of you. Don't let it! If Ms tries to throw such challenges at you, accept them and appreciate them. These instances allow you to learn more about your body and how it functions.

Remember this: you may have MS, but do not let IT have YOU!

Friday, 1 May 2009

I am not stupid. I have MS.

The effects of MS are many and varied, in fact, as individual as people are ... so too are the symptoms and manifestations of MS. I doubt whether any 2 MS sufferers have identical aches, pains, symptoms or relapses. This is not really that difficult to understand, since we all have a similar biology but, and this is the crucial point, we do not have the identical biology. Allow me to elaborate a little on this.

We all have different abilities and endurances, flexibilities and limitations. If we did not have these then we would all look, speak, move and think like each other. Frankly, I love my individuality. But one has to take the good with the bad, and on occasion my particular MS symtoms do affect my speech and hearing. It took me a while to discover the hearing problem, especially as we are nowadays so surrounded by sound, but once I had determined that there clearly was an issue with my hearing, it seems to behave more erratic than any other symptom.

The problem with hearingis manifold. In the first instance, you need to separate genuione sound from noise. I often find that this is easily accomplished by blocking out human speech, most of which is noise without form or content. This is futher aggravated by a tendency for many people to mumble their way through life while expecting you to interpret the mumble and refashoin it into something intelligible for their sake. I now refuse to do this! But my refusal has had some knock-on effects. Due to my lack of response, and my response on occasion not pertaining to the conversation, I am now considered to be stupid.

Generally, people will not say this to your face ... instead, they will slow down their speech and accompany this with elaborate gestures. The strange thing, though, is still the presence of relentless nonsensical noise emanating from the lower half of their faces, and still does not assist in any form of understanding.

One a biological level, I know I am not going deaf, simply because I have good days and bad days. Although I am male and therefore biologically inclined towards selective hearing, it is still not intentional selective hearing. What happens is this:
Sound enters your ear after being guided there by the lettuce-like outgrowths on the side of the head. This sound is then picked up by the tympanic membrane and the bones of the ear. Finally it is converted into an electrical impulse that is transmittedd along nerves to your brain, where it is analysed, processed and (if you are male) discarded or (if you are female) filed. Obviously the whole process it much more complex, but the point is that it involves impulses being transmitted along a nerve that may resemble a dirt track as opposed to a freshly laid motorway. Hence the hearing difficulty.

Thus in conclusion, a hearing difficulty may lead to an impression being formed that you are somewhat less than able to use your mental faculties.

It must be said that being regarded as stupid has had some rather funny paybacks, and I am now inclined to explore this avenue more in depth.

Tuesday, 28 April 2009

I am not on the drink.

Occasionally, MS strikes in such a way that walking and talking becomes difficult and strange. To the "uninitiated" it appears as though you are drunk. Your walking may become unbalanced and lead to frequent close encounters of the painful kind with the pavement or strategically placed objects that were designed to inflict the maximum amount of damage with the minimum amount of effort. My particular forte is the stealthy corners of tables,but I have been known to be attacked by the unobtrusive yet highly effective doorway.This balancing problem is particularly aggravated when you are suffering from a cold or flu. Because one of the manifestations of MS is slurred speech, trying to convince people that you have MS can prove somewhat tiresome and futile. Unfortunately, for this reason alone, it is important to tell family and employers that this is not the case. Your best bet is to educate them and do it quickly. It is part of the human condition to judge before knowing all the facts.

Think happy thoughts, and keep that MS misfit at bay.

Monday, 20 April 2009

Needles and pins

You know the feeling, but not on this scale. This is perhaps one of the most common side effects of MS which most sufferers will experience most of the time and mention more often than anything else. Why is this? Simply put, everyone has at one time or another experienced this sensation, and it is easy to replicate. If you wish to do this then all you need to do is to sit on one leg, foot under your backside, on a sofa. Don't change your position in any way for approximately 45 minutes. After this period, without moving your body, determine whether there is any sensation in the foot you are sitting on. If you can still feel your hand touching your foot, then continue sitting for another 45 minutes ... remember to forgo any type of movement of any kind.

Now ... get up quickly from your seated position and walk briskly towards to kitchen to make yourself a cup of coffee. If you have done this correctly, then you would have experienced the following. Once you had decided to move your leg, it would have felt heavy, awkward and, in some way, not part of your body. Once you attempted standing on it, it would have been weak and possibly buckled under your weight. It would also be accompanied by a sharp pain. Finally, on your road trip towards the kitchen for your coffee, you would have experienced a distinct weakness in that leg and a shooting pain with each step you took. After about 2 minutes the harshness would have calmed down a little to the more familiar pins and needles that everyone experiences. Viola ... welcome to our world. This is only a taster of what we experience and this is the reason why most MS sufferers walk in a variety of strange and awkward ways. We would rather be walking in normal ways like most people do, but it is not always possible.

This experiment was conducted on only one of your legs. Now try it with both, and you will then get the full experience, but be warned with both legs in this state you may fall flat on your face while trying to get up from the seated position. If the pins and needles were only limited to the legs, it would be blessing, however, this is not the case. Virtually any part of your body that has nerves will experience this sensation. Furthermore, from a purely male perspective, believe me when I say that there are some parts of your body where this sensation is perhaps more weird than it is painful. I doubt that this needs elaboration.

Due to way that your body is wired, it is possible for the pins and needles to affect either the upper half or the lower half of your body, or the left side or the right side. Thus paraesthesia (the official name for pins and needles) can be and often is "hemi" in its effects.

Thursday, 16 April 2009

Those strange little aches and pains

Having MS is, in all honesty, an adventure. This may sound strange at first, however, and it probably depends on your particular frame of mind, but each day brings with it both new challenges and new experiences.

For example, a any person grows older the sudden appearance of little aches and pains is perhaps anticipated by most people. We often see the elderly bent double with aches and pains and then accompany this sight by giving you a run down of various organ failures and the onset of age related diseases. I am not ridiculing the elderly, do not misunderstand me, I am merely pointing out what most of us have experienced at some point in our life. However, when a person in their thirties, suffering from MS, suddenly complains about similar things, it is seldom regarded in the same matter-of-fact way. Usually, people fall into one of two groups, namely the sympathetic and the incredulous.

But these little aches and pains are as annoying as they are cumbersome. Painkillers can be used, but it does not always help. Besides, if you are like me, then you do not take many pills, and thus feel the burn. The pains I suffer from most on an almost daily basis are "my brain pains" which are more than headaches. These are short sharp stabbing pains in my head, and I would prefer a headache to these anytime. The other pains are "my deep bone pains" which usually occur in the limbs. They are hard to describe but the best I can do is to say that it feels like the surface of the bone in my limb is being crushed very slowly. Yep, I knew it ... now you think I am weird, but this is what it feels like. The pain is deep beneath the muscle and no matter how you stretch or twist your limb, it does not go away. No! It does not resemble the pains you experience after a heavy workout at the gym, which are normally muscular pains. These are much deeper than those.

Personally, I always feel the need to stretch or twist the limb in order to alleviate the discomfort. Today is one of the days that I am feeling such a pain ... only this time the pain is in my feet. It feels like walking on sharp stones with bare feet, which would be a silly thing to do in the best of health ... and I suppose there is some curious custom somewhere in the world where this activity would be admired and rewarded ... but moving swiftly on ... it rather clashes with my fetching and suave manner of almost knuckle-walking wherever I go.

I believe that I can deal with virtually everything that MS can throw at me, but these pains are disturbing my sleep ... and this I cannot ... no ... will not ... tolerate. I think it is time to invest in a soap box and a bullhorn!

Monday, 13 April 2009

After the relapse

After enjoying the Easter festivities, it is once again time to report back on any progress. When I last posted on this blog, I was recovering after a mild relapse. Mild is a relative term that is possible the more subjective than most MS sufferers will ever acknowledge. The Doctors have no scale to use, and neither does the patient. A lot of it depends on your frame of mind during and after the relapse.

However, I had not perceived any permanent damage in the first three days after my recovery. At least, nothing that would worry me. Since the recovery process takes a while, my first inclination may have been somewhat premature. As I had mentioned before, each relapse does leave some damage as a calling card. This damage may not be visible, but more often than not, I believe this is not the case. My recent relapse has definitely left the left side of my body a little worse off than it was prior to the relapse. Mostly the effect is a weakening of that side of the body, which is visible as loss of muscle tone. Fortunately, for the public in general, I am not inclined towards exposing my body by recklessly ripping off my clothes in public.

There is a very good reason for this. The relapses are not confined to only one side of the body. These relapses can affect any side of the body at any time. After a few relapses on each side of the body, things are not quite .... shall we say, aesthetically pleasing to the eye. When muscle tone is reduced, you become very acutely aware of gravity. So loss of muscle tone = bits heading south. Being male, and not wishing to speak on how this affects the ladies, I shall confine my observations to purely the male side of things. Any person of the opposite gender is welcome to contribute from their perspective, and please do because I am intrigued!

The first visible body part heading south on males would the the pectoral muscles. But this is OK, ... I think we can handle this as a gender without loosing too much sleep about it. It bites, but its acceptable. The Glut├Žus Maximus, i.e. the muscle that is also known at the butt, also appears to have a southward inclination as do all muscles the body, in fact. But most distressing is the southward tendency of the "crown jewels". Under normal circumstances, when the crown jewels start the slow migration to the south, this is a joyous event marked by the owner entering into manhood. The continuation of this southward trend is usually a natural one which does not illicit any more attention after entering manhood. It is generally considered that at some point this southward trend shall cease. My particular worry is that this move towards the south is accelerated after each relapse.

As yet my voice has gotten deeper, but I would like to believe that this is a normal natural phenomenon. My worry is that in 10 years time I will be forced to look in the mirror and discover that I am the proud owner of something that resembles a pair of long socks, each with a single plum in it, fighting for dominance with my knees. I hope you understand my concerns, especially when it would appear that plastic surgery is the only dignified option to rectify such an unfortunate situation. All other options are simply not acceptable, especially the equivalent of a bra for those bits.

Perhaps I worry too much, however, these are things that concern me. On the brighter side though, I have had a brainstorm. I am investigating the feasibility of having Orange County Choppers manufacture a customized motability scooter. My idea is to have two choppers made into one, in a similar fashion to a catamaran.

My fondest regards to all of you, and thank you for reading this blog.

Tuesday, 7 April 2009

A Multiple Sclerosis Treatment


As Featured On EzineArticles


As Featured On EzineArticles

Fancy a metallic taste and zero immunity, then this may be for you, but read further before deciding.

The Beta Interferon did not seem to be working. I say seem because it may have diminished the ferocity of the relapses I was experiencing, however, there was no way of being certain of this. One thing was clear ... I was still having relapses and occasionally speaking as though my mouth decided to fall asleep without informing the brain of its intention to do so.

It was decided that I should be given an experimental drug that appeared to have its uses for Multiple Sclerosis. After being told about the various risks I was going to run, I decided to proceed. The drug was called Campath 1H, and it had been used as a treatment for cancer sufferers. It was one of Campath 1
H's party tricks that proved most useful to sufferers of MS, namely the ability to destroy a subset of your immune system. Yes, this does sound drastic, however, a biology lesson is needed here.

Importantly, MS is not a disease! MS is a programming mistake. Your immune system is designed to ward off all forms of nasties that may wish to harm you. This protection is normally welcome, and tragic when it ceases to function (as in AIDS). With MS, the immune system has been engaged into the highest gear possible. So what this means is that not only will it attack all the nasties, but it will attack anything it perceives to be a nasty. In the case of MS, the perceived threat is the protein that forms a protective sheath around some of the nerves in your body. The sheath is usually called the myelin sheath, and it acts as an insulator to ensure that the electrical impulse traveling along the nerve reaches its destination. So ... remove the myelin and you diminish, if not remove, the function and effectiveness of the nerve. When these nerves cease to function in the usual manner, the sufferer will experience a flare-up or relapse. The mission Campath has is to destroy that part of the immune system responsible for this damage. Once this has been achieved, your body will naturally start building up your immune system, hopefully with a fresh set of instructions that do not include attacking your myelin. In this capacity, Campath is called an "immune modifying drug", however, Campath cannot repair the damage done to your myelin and thus can only hope to stop your MS in its tracks.

The way Campath was administered to me was as a daily intravenous drip. However, before the Campath IV drip was administered, a daily steroid IV drip was administered to "temper" the effects of the daily CampathIV drip. This is where you experience the euphoria of a disgusting metallic taste that sets up residence in your mouth, and refuses to vacate for around 2 weeks. Other than the taste, you experience nothing else while you are on the steroid drip. The very first Campath drip is another matter entirely. At first you feel a little fatigued and colder. After 4.5 hours, you are shaking vigourously to stay warm and to say that you are feeling unwell would be as understated as saying "the surface of the sun is a bit warm". At this point you are in real danger, and the nurses know this and prepare for it. The cold you experience is due to an incredible rise in your core body temperature. This is not only dangerous, but if left unattended ... fatal. The solution is to wrap you up in ice cold towels, while you are feeling cold already, and therefore bring down your core temperature. Unpleasant! You have no idea!

The same routine is performed for another 4 days. However, as the first treatment dessimated approximately 80% of your immune system, the effects of subsequent treatments during the following 4 days is hardly worth talking about. During these four days, a host of aches and pains appear, but paracetamol or ibuprofen can deal with these.

On the day that you are discharged, you are given the do's and dont's that you will have to adhere to if you wish to stay alive. Your diet wil take the biggest knock. Any food containing any kind of culture, i.e. soft cheese or yoghurt, and food that has not been cooked, i.e. by placing in a suitable lead-lined dish in the middle of the nearest nuclear bomb testing facility, should be avoided. The list goes on and on, and then starts addressing your social life by forcing solitary confinement for about 3 weeks. The reason they give you is that you have, at that point "an immunity to nothing ... and everything else should be avoided".

The important thing to mention here is that in my personal experience ... CAMPATH really did make a vast difference. I occasionally still have flare-ups and relapses, but I can deal with these ones ... and I have not had anything like the dibilitating hemiplegia that I experienced a few yers ago, which left me with about 90% of my prior muscle tone and abilities.

CAMPATH is the name I know this drug as, however, it was recently renamed as "Alemtuzumab" for whatever reason. If you click on the following link, you will be able to read more about it.
http://news.bbc.co.uk/1/hi/health/7680641.stm
What I have mentioned here is my personal experience with this treatment, and to give any sufferers who have not heard of it, an opportunity to decide whether they wish to try it or not.

Monday, 6 April 2009

Relief and anger

After 6 days since the beginning of the latest event/episode, there is finally relief at the realization that things are returning to normal. All systems are functioning as expected and no permanent damage is evident ... yet! Sometimes damage only becomes evident after two or three weeks, and usually takes the form of an inability to perform some mundane action that was easily performed before and is now no longer possible.

This latest episode affected my legs and feet in the first instance. I then felt the left side of my face starting to slide southwards, trying to drag the right side of my face with it. Looking into a mirror did not reveal much, except for a slight loss of muscle tone and perhaps a marginal delay in the response to any stimulus. The frightening aspect of this all, is that it so closely mirrored a stroke in the first signs, things like slurred speech (or the inability to correctly form words), the smile being less obvious on the affected side and weakness on one side of the body. Unlike a stroke, the weakness I experienced was in both of my legs, my right arm and the left side of my face. Having experienced similar symptoms before and not diagnosed as having experienced a stroke, you may well think that I experienced a Transient Ischaemic Attack (TIA), however, this did not happen to me. I guess I was just born lucky. But, very importantly, if you experience this, then you MUST seek immediate medical attention ... immediate ... not tomorrow or next week, but immediate. Let a diagnosis tell you whether you experienced a stroke or not. Just because you have MS, it does not necessarily follow that you will be immune to, or spared, anything else.

Another rather more annoying side effect is the social aspect of such an episode as I experienced. I frequently have difficulty with mobility, but that hardly seems to slow me down. I am possible one of the most obstinate people you may ever have the misfortune to meet. But I digress, as usual! These mobility issues do not go unnoticed, much to my annoyance, with many kind and gentle people worrying and offering assistance. I always graciously decline and thank them for their concern, however, some who cannot be classed in the same league take this as a sign of weakness or a reason to institute change. I am currently experiencing one of the latter processes. As a disabled person, the first thing you must do is get your back up and put on the meanest face you can possibly manage. In my present situation, my "compatibility with current employment" is the focus, and the way that this is being addressed is by attempting to get me to agree to my employers contacting my doctors. In all fairness, this may be legitimate in many cases ... but not mine. I use my mind more than anything else ... and there is nothing wrong with my mind. I may occasionally experience difficulty in walking and talking, but I never have any difficulty thinking and analyzing. Furthermore, and this is very important, any such compatibility must be assessed using your written job description as found on your contract, and not based on both the job description and the extra activities that you may have taken on. It is natural, for example, to use a ladder to perform a simple task such as putting a book on the top shelf. Activities that you would not think twice about. But, as this may not be in your job description, it cannot be used against you.

If there is nothing else that you find useful in this blog, then at least make a note of the following. Know your rights as a disabled person, and SEEK legal advice. Do not sign ANYTHING until you have sought legal advice and know all the facts and repercussions. The Disability Discrimination Act (DDA) is your best friend and will help you, but it cannot help you if you have signed something away. Any person who wants access to your medical records, or any of your other records, must have your consent in order to do so. But furthermore, it is your right to demand an answer, in writing, the reason for this request and the use to which this information will be put or the intention for such a request. Finally, it is also your right to refuse to give consent, however, it is likely that if you do refuse to do this then the employer may claim that "the inability to obtain up-to-date medical information may affect decisions about your future employment with the...". Thus placing you in an almost impossible position. Roll in the DDA, Disability resource centre and a legal advisor on employment.

Do not be bullied!

Thursday, 2 April 2009

No improvement

Since my last post, things have not improved. My ability to walk is still subject to the whims of misfiring nerves, and limited to approximately 30 feet before pain wins and I am forced to stop. Balance is also affected and there is still no sensation in my legs.

The strange thing about MS is that relapses or flare-ups happen quite suddenly, even when you recognize the triggers, and can disappear equally speedily. The damage to nerves is, as yet, not reversible and thus will always leave some residual aftereffects during the post-relapse or post-flareup recovery phase. However, no nerves act in isolation, they are merely the pathways for impulses to travel between points on and in your body. The troubles that most MS sufferers experience after relapses or flareups are usually due to these nerves not functioning as they should, however, on some occasions this damage is not confined to the nerves alone. For example, one of my relapses has left me with a vision impairment in my right eye. Another relapse has caused the left side of my chest to lose muscle tone and hence my left pectoral muscle is slightly lower than my right pectoral muscle.

So each relapse has to be taken serious and as an MS sufferer you need to become a lot more aware of your body. Small changes in your body's abilities will affect many things from lifestyle to daily routine work. Thus, your golf game will suffer but so too will your ability to do your job. The main thing to do is not to give in to the MS. You may have MS, but if you give in to MS ... then it has you! Once MS has you, you have taken the first step down an ugly road. It's a beast, so fight it. Try for as long as possible to do things for yourself by yourself! The added benefit is that this also makes you feel better mentally.

For this reason, in my present condition, I am refusing assistance from everyone and attempting to rest. Rest is very underrated, but it really does help in getting over tough relapses. Please do not refuse assistance if the relapse is so bad that you are endangering your own life or the lives of others. That would be foolish and counterproductive.

Give MS a good fight.

Tuesday, 31 March 2009

New damage?

A new development, over the past few days, has raised its ugly and monstrous head . On Sunday I started experiencing a little discomfort in my legs, which I did not heed. By Monday morning, this had progressed to increased discomfort with the addition of reduced walking abilities. By noon, had to admit that it was probably unwise to stay at work, particularly as I was in agony. The sensation was akin to hot needles being fired all along the inside of my legs. This sensation of extreme heat then spread to the outside of my legs. Every step I took brought on a renewed barrage of "hot needles" attacking the inside of my legs.

Once I got home, I was unable to move more than 20 steps without stopping until the pain subsided. Foolishly, I thought this had all disappeared over night, and happily proceeded to work this morning. I say happily, firstly, because I do enjoy my work very much, and secondly, because staying at home is not for me. When I got to work the pains started coming back, not very aggressive but certainly enough to warrant notice and caution.

By lunchtime I was back in the same situation as the previous day, but being stubborn, foolish and engrossed in what I was busy doing, I stayed on ... and am now paying the price for such a display of gross stupidity and wanton recklessness. I am now in exquisite agony, the burning sensation spreading upwards into my back, and down my right arm. Writing this post is not only difficult, but also painful.

As any MS sufferer will tell you, before the onset of either a relapse or flare-up, certain triggers are activated. Most sufferers recognize their particular triggers and can anticipate difficulty ahead, but never quite knowing when it will happen or what will be affected. So ... you are stuck with a warning light but no clue about anything else. It comes as a surprise to everyone when it finally happens. For example, the trigger may be that your legs hurt in a particular manner but the result is that either your arms cease to function or that your ears pop off.

These triggers vary from one type of MS to another, and even from one person to another. MS is very odd this way because no two sufferers will have identical experiences, and yet the end result is the same, namely scarring of some kind in the body. Multiple Sclerosis means "many scars". Unfortunately, the scarring is often not only physical, but this is a topic for another time.

One thing that does concern me about this present event, is the fact that these pains and resultant mobility challenges are new. I have not felt these before. According to the specialists, relapses are new damage and flare-ups are old damage reactivated. This feels like new damage, and although I do really like the people at the clinic, I do not wish to visit them for another treatment. I believe Campath helps but the treatment is harsh, and the subsequent isolation mind-numbing. The isolation is necessary to prevent exposure to a plethora of dangers which, without an immune system, could be debilitating if not fatal. Considering that I have daily contact with students, this becomes a serious matter for me ... and I have to start playing"where in the picture is Wally" with me being Wally.

So ... at present I am in a state of high anxiety, hoping to avoid another treatment while trying to find ingenious ways of getting to work (i.e. out of the house)!
{Queue in "the Great Escape" theme tune}

Saturday, 28 March 2009

The club foot

The last couple of days have been uncommon in that I experienced one of the more curious and rare manifestations of my multiple sclerosis. I had not really named this manifestation, that is, until yesterday when I christened it and called it "The club foot". Unfortunately, I experienced this sensation in both feet. Let me explain the sensation.

About 4 days ago, my feet started tingling and I experienced regular instances of pins and needles. This graduated to more pronounced tingling during the following days, which, under normal circumstances and with the right frame of mind, may have been construed as pleasurable. However, as a veteran of various relapses and flare-ups, I anticipated that the pleasure would not be mine!

This was borne out the day afterwards when all feeling in my feet was disengaged. I could not feel the socks on my feet nor the texture of the carpet I was walking on. I could not feel whether my foot was airborne or on terra firma. I was not capable to distinguishing whether the ankle was contracted or flexed, without performing a visual check.

It goes without saying that mobility was, dare I say it, profoundly challenging and the source of a vast vocabulary that would have made hardened sailors blush like victorian young ladies on their first date. Each step I took was neither painful nor pleasurable, but it was hazardous and comical. I have the ability to "step outside of myself" and view myself in a very objective manner, furthermore, I can see the comical side of a great variety of situations. Whether this is a defence mechanism, or not, is largely immaterial; however, it does allow me to react to the situation in a positive way. I believe that this is important.

If I were to react to situations in a negative way, the situation would be aggravated and one step closer to a less than favourable outcome. Although I do have access to a motability scooter, I refuse to use it ... at least ... until all the modifications I requested have been completed. I do not ask for much, but I insist on having all terrain capability, fuzzy dice and a flame job. Once more I find myself rambling on.

This sensation or, more precisely, the lack thereof, lasted for two days and had various knock-on effects; such as lack of sleep, reduced mobility and back pain. The latter was caused by the awkward walking manner that one is forced to adopt. These "after-shocks" are as difficult to cope with as the principal event.

Thursday, 26 March 2009

Concentration span .... gone!

Recently I have noticed something that particularly bothers me. The background is quick and simple. I am an academic through and through, undeniably and unequivocally. I have always prided myself in my mental abilities and agilities. I have always been able to completely immerse myself in any subject matter and remain at a state of high concentration for particularly long periods. During normal conversations, I easily follow the topic and, equally, can discuss complex subject matter without losing my train of thought. My brain has been my joy.

A new development has suddenly reared it's monstrous head ... for me anyway. Although I can still immerse myself in any subject matter and maintain gargantuan periods of concentration, the same is not true for normal conversation. During such conversations I will happily discuss the present subject matter and suddenly ... without warning ... the very next words that were on the verge of being formed in my mouth are erased from my mind and cunningly replaced by totally unrelated words. Words that have no bearing on the subject being discussed. Words that make no sense ... even to myself!

The look of utter consternation on my target's face clearly indicates to me that this has happened. This look is soon followed by another, that of disbelief! My intention is not to mess with their minds, however, I find myself wrestling with mine. Bringing my kicking and screaming mind back to the original topic, while maintaining an air of dignity and still trying to figure out how to make what I just uttered relevant to the topic, is ... quite frankly a Herculean task and entirely exhausting.

I do not believe that this happens to me due to either a particularly boring subject matter or person, because I have a completely different way of dealing with such instances. Furthermore, I clearly remember that the topic did interest me. During a normal loss of train of thought, one has the ability to still see the track if not the train. In my scenario there is no train and no track. It is a void.

According to the specialists in MS, trouble with concentration is one of the more regular complaints that sufferers share. I do not feel that my powers of concentration are diminishing in any manner, however, nothing else explains this event. Or is there? Perhaps it is a single neuron, the one whose sole task was to hold a train of thought, that suddenly and inexplicably misfired or, alternatively, decided to drop the connection and observe the chaos at my expense.

The mind is such a powerful organ, and yet it is also fragile. One little misfire and the intricate mechanisms, that make it work the way it does, are thrown into disarray. I still believe that a strong mind is essential in fighting MS. In the meantime, I may just stop wrestling it back to the original topic of conversation, and let it run rampant, recklessly and with "arms" in the air, along the new train of thought. I do empathize with people who will be at the receiving end of this ... but I really must have some fun too! You have been warned.

Wednesday, 25 March 2009

Talking in slurs

One of my more frequent displays of dignified conduct, the slurred speech, is so attractive that it merits a posting on its own. During one of these "episodes" my face starts to tingle the night before, and miniscule impulses fire all over the face. I have occasionally wondered whether this was the precursor to developing a twitch, similar to Herbert Lom's twitch in the Pink Panther movies. These twitches are not visible if you look in a mirror. Quite frankly, they are highly annoying and become more and more annoying until extreme fatigue grabs you by the throat and forces you into a coma. Fine ... I know this is a bit extreme, but you try dealing with it.

It would be nice if the story ended here, however, when the morning arrives and you wake up in a good mood, you are instantly aware that the previous nights twitching has disappeared. Hooray! Until you utter the first few words in morning to your loved ones, which should be "Good morning ... " and what actually spews forth is " ghghfoook murnnib ..". Sounds good doesn't it! Unfortunately, I may get up in the morning but I don't wake up until I have had at least 2 cups of coffee. The mind does not engage until the levels are adequate. So, while these words erupt rampantly from my mouth, I don't realise what has happened and continue with a normal conversation ... "deodghe zleeep val" which means "Did you sleep well?".

The second phrase is a dead giveaway, and I become reluctantly aware that what I think I say and what I really do say, don't match. I therefore prepare myself for a hard day, trying to communicate my thoughts to the world in general while attempting to maintain some dignity. I have noticed that general fatigue does seem to aggravate the whole event.

During such an episode, I have had to prove that I was sober, even though my speech argued heavily against this. At times it feels like the top lip has suddenly gained weight and will not be lifted. In fact, everything on your face, from the bridge of the nose downwards, starts sagging and the lower half of Bart Simpson's face suddenly finds a new home on your own face. Telephone conversations are hard at the best of times, but during such an event you become totally unintelligible.

However, you can use this type of episode to your benefit. Firstly, you have plausible deniability in your favour, because no person understands you and thus cannot hold anything against you even if they heard correctly. Secondly, you have an excuse to avoid speaking to people. Thirdly, people immediately think you are slow in the head because your speech is awkward, and this gives you the edge over such people .. you know the ones I mean ... those who try to pull the wool over your eyes, as though you don't have enough problems at that moment.

To deal with this type of event I have used 3 techniques. Firstly, to slow down the speed at which I speak. Secondly, choose the proper words for the minimum effort. And thirdly, only speak when it is absolutely necessary and completely unavoidable. The latter has proved valuable even during other non-"episode" periods.

The hardest thing to do with MS is to train your mind and body, but it is the most rewarding feeling when you can control both, especially during flare-ups and relapses. I still believe that the mind is the most powerfull weapon in your arsenal against MS.

Monday, 23 March 2009

Quest for toilets

Finding facilities and deciding upon the quickest route to them is foremost on many MS sufferers I have communicated with. Once again we are dealing with receptors that do not function at their peak. In this case the receptors are those located in the bladder, which seems to recognize that the bladder is filling up and send a signal that emptying it is required. The information that you are not given is how full it is and thus how much time you have to find the appropriate facilities.

So when you do get the signal to relieve yourself, you suddenly find yourself in a panic because other receptors are telling you that the nearest lavatory is still too far away. The specialists will ask you how the "water works" are, so they are aware that this is a common MS problem and is not gender specific. In fact, at some point you will be required to undergo the dignity of a "water works examination" which sounds more tragic than it really is. At first they may scan you (with the same scanner and aqueous cream used to scan a developing foetus in a womb) for a baseline measurement. You then drink ... drink and then drink some more. Then you wait. When they feel that your bladder has filled enough, which incidentally is about 30 minutes after the point where you are convinced that the bladder shall burst, they pull you in for another scan. During this scan they press down upon your filled bladder with the scanner, further upsetting the balance between maintaining dignity and relieving oneself in public. When they have finished, the invite you to relieve yourself at facilities that by no stretch of the imagination are near enough to reach without spillage.

Somehow you do manage, either by tying the hose into a knot or mincing your way along the length of the hospital. Neither is particularly useful. Relief is instantaneous and prolonged, but the whole drama is not over yet. Afterwards you get dragged in for a final scan. Why do they do this? It is all designed to determine whether you are able to empty your bladder entirely. Why is this important? Because most MS sufferers need to visit the lavatory more often than most non-sufferers, and the doctors think this has to do with an inability to properly empty the bladder. I am not convinced about this.

But the indignity of the "water works examination" was an experience I do not care to repeat.

Sunday, 22 March 2009

Is it hot or cold

Being able to tell the difference between hot and cold is something many take for granted. In fact, it is hardly considered worthwhile mentioning, except that recently this has become a problem for me. For many years, being able to tell the difference has allowed me to make certain decisions such as "should I wear a jersey or not" and "is this water too hot for a bath". Perhaps you can see where this is going.

For the past few months I have had difficulty in determining whether something is too hot or too cold. This is true for most ambient temperatures, whereas I can still tell the difference between boiling and freezing. I first noticed this while I was running a bath for my children. I was on the verge of lowering them into boiling water for slow simmer when, fortunately, my wife came in and casually tested the water. To me the bath water was at a perfect temperature, but my wifes hand turned "cooked lobster red" and required immediate cold water treatment. Imagine what would have happened had I put my 3 year son into this water.

If you suffer from MS then this is something that you must be aware of as of NOW! Biologically, it is easily explained. Your perception of temperature is facilitated due to receptors, in and on various parts of your body, connected by
nerves to your brain. These nerves are high speed nerves, and they have to be because it is part of the body's protection system. Therefore, these nerves are coated in myelin which ensure that the impulses sent are not lost nor altered. Take away the myelin and the message may not get through.

Indeed, the problem with an inability to determine temperature has other knock-on effects. On a hot summer day I suddenly find myself requiring a jersey to stay warm. On another occasion, on a cold winters day, I found myself perspiring. Neither of these are welcome, the former will raise your core body temperature to dangerous levels if it has not already done so, whereas the latter may lead to hypothermia. I doubt any person would like any of these to occur, and granted these are extreme cases, however, the body is a finely balanced machine and little changes can have disastrous results.

I did notice, about 3 years ago, that I was hardly perspiring during the summer. This trend has continued and even now perspiration seldom happens. The result is rapid dehydration and a rapid increase in core body temperature. If you live in a hot climate and suffer from MS, you must ensure that you are never ever without a water bottle by your side. And drink regularly. Remember that your body no longer transmits all the warning signals that should be transmitted.

By proper precautions, MS becomes less problematic.

Friday, 20 March 2009

The Long John Silver Walk

Due to the hemiplegia that I experienced, the flare ups that I now experience cause this walk. 40 paces and you are shattered. Why do I call this the Long John Silver walk? Simply because one leg does not function as nature and biology had intended. Briefly, the leg loses flexibility and you end up hobbling as though you are the owner of a wooden leg. It becomes particularly strenuous ... and comical when you are faced with a plethora of stairs to negotiate. One leg functions correctly, and the other must either be swung out the side and onto the next step or (and this is harder work) it must be brought up to the same step, where after the first leg ascends the next step in the usual manner. Doing it in the latter fashion feels like you are climbing twice the number of stairs, and furthermore, once you have reached the summit, the good leg is knackered.

As an MS sufferer you develop numerous different walks to assist you in getting from A to B. Some of these look comical and awkward, but are in fact the most efficient way of moving and are less strenuous on other parts of your body, such as the spine. I have a particular walk that looks as though I am a little slow in the head, perhaps even spastic because I end up dragging one half of my body "behind me" and in particular the affected leg. Another, and probably the most common MS walk, I call the "cowboy" ! With this walk you look as though you have dismounted your horse in an undignified manner, because the distance between the feet is greater than the width of your hips. It is a very flattering walk, in fact, they all are and should be used on the fashion catwalks of London, Paris and all the other fashion capitals of the world.

Other factors that affect walking include
1) balance issues
2) numbness of the feet and legs
3) sensations of "heavy legs" where the legs feel as though weighted down with lead weights
4) limited flexibility of the feet, whereby the foot does not roll in the normal manner

In my humble opinion, it would be so easy to give in to the mobility problems that I experience, however, for me this is not an option. I have resisted the walking stick and the motorised wheelchair with vehemence.

In fact, who really cares what you look like when you walk funny ... at least you are walking, and exercising your body and giving MS a good solid fight. Walk slower and try to control more of your motion with each step. Take regular breaks, especially when your legs feel as though they are on fire (another common sensation I discovered). You now have an excuse to walk slower and observe the world around you. The remainder of the world may see you as DISABLED, but I like to think of it as DIFFERENTLY ABLED.

Are there any other amusing MS walking styles? Please tell me.

Finally, remember that many youngsters try to develop a signature walk and spend years working on one, and we have one without much effort.

You may have MS, but never ever let MS have you. Use that beautiful mind and fight back.

With affection
Silent Mike

Thursday, 12 March 2009

Beta Interferon treatment

The joys of injecting yourself with a cold acid. After I was diagnosed with MS, I was given three choices:
1) an experimental MS trial drug,if
2) beta interferon, or
3) no treatment at all.

Option 3 never really made past the first hurdle, in fact it never took part in the race. The first option carried with it a few risks, not least of which was its effects on either egg or sperm cell. As I was contemplating creating my family when the first option was offered, I felt I had to decline this offer until we had a family. That left on Beta Interferon. If memory serves, there existed 5 different forms of Beta Interferon, manufactured by either 3 or 4 different pharmaceutical companies. Each form of Beta Interferon had its merits and drawbacks, but I chose Rebif. Why ? Being male, I was taken by and wanted the GADGET used to inject yourself with. There was no better reason ... honstly!

And thus began the Beta Interferon days, which lasted approximately 2 years. A few things that I later developed issues about:
1) keeping the serum at a constant pressure
2) keeping a sharps bin
3) extra traveling baggage because the serum was being kept and cooled in a lunch-box
4) the discomfort experienced in injecting yourself
5) the discomfort of the actual serum, which is an acid and it is cold.
6) and a few other issues.

Unfortunately, Beta Interferon had very little, if any effect on me, as I had further episodes of paralysis. After a short wait, I was placed into the experimental treatment.

To cut the story short, Beta Interferon may work well for you, and if it does then use it.

Silent Mike

Wednesday, 11 March 2009

Headaches and brain pains

Apparently headaches are not associated with MS. Apparently the pig is the pinnacle of aerodynamics, and hence it does not require the use of wings in order to perform amazing feats of aerobatics.

I have had some of my most debilitating headaches during the last 4 years, and strangely enough these headaches are hardly worth mentioning when compared to my "brain pains". There is a marked difference between the two. Headaches are a dull pain by comparison. A headache, usually, is located either behind the eyes, one the frontal lobe, centrally in the head, along the temples or down the back of your head towards your spine. A headache is either continuous or throbbing, but persistent and usually lasts for a few hours. Headaches can make you feel tired, queasy, stiff, and so on. Everyone has experienced a headache in some form.

The "brain pain" is a different beast entirely, and no ... it is not a migraine. In terms of sheer pain value, it is more painful than a regular headache by a factor of at least 10. It arrives suddenly, without the subtle warning normally associated with regular headaches. My "brain pains" have become more regular and more aggressive. The word "stroke" is quite possibly popping in and out of your head at this moment, and I thought so too at first, however, my GP and specialists are now convinced that this is not an option.

The "brain pain" feels like an extremely hot poker inserted into the spine and then rapidly hammered upwards until the tip erupts out the top of your head. Unfortunately,this is not the end. During the onset of some of these, I have lost either balance or strength out remain standing. These effects do not last long, usually about 10-15 seconds, but the pain persists - occasionally for a few days - and gradually disappears. Headaches can be treated with pills and these are generally effective, however, nothing seems to work with the "brain pains". During a particular desperate episode, I consumed enough Nurofen tablets floor an elephant (approximately 4 times the maximum dose during a 24 hour period). I have tried other tablets - which I am convinced were designed to be inserted rectally into a rhinoceros using a high powered and large caliber rifle - issued by the specialists and still had no relief.

I am convinced that these "brain pains" are responsible for the areas of scarring detected on the MRI scans of my head. Altruistically, I hope one else is being subjected to "brain pains", realistically, I suspect other MS sufferers are experiencing them, and gratefully would I receive confirmation that I am not alone in experiencing these.

Tuesday, 10 March 2009

Multiple Sclerosis Diagnosis

In 2001, I experienced a rather strange sensation which was odd at first and worrying very shortly afterwards. My arms were numb and I was unable to lift them or do anything of importance with them. In fact, breathing was rather laborious too. A visit to my GP resulted in a diagnosis for Repetitive Strain Injury which happened to be the buzz word of the year 2001. Having had no Medical background, and being male i.e.gullible, I took the diagnosis as the Gospel truth. After 2 weeks of this, which had its moments to be sure, the sensations and abilities of my arms returned back to normal. So obviously it was RSI because rest and recuperation had healed me.

One year later, almost to the day, I started losing sight in my right eye. Everything appeared blurred and turning towards white. This was unrelenting because the whiteness persisted even when I closed my eye. Sleep was virtually impossible, for three reasons in particular:
1) the ever increasing whiteness made it hard to slip into sleep
2) the eye was hurting in a peculiar manner, and
3) when I closed my eye interesting patterns were flashing across a white background, which given my natural intense curiosity kept me wide awake.

Off to the GP again. My GP is brilliant! I described the problem and he immediately booked me in to see someone in an eye clinic a few hours later. This person shunted me onto the department of Neurology at my local hospital. Soon afterwards, a few weeks later in fact, I was booked in for a lumbar puncture and an Magnetic Resonance Induction (MRI) Scan. After some more tests the diagnosis was delivered. I was not devastated or even mildly upset, perhaps because I finally had an explanation and therefore something to work with. Ignorance probably played a significant part in this. But I quickly educated myself and my life partner, and we decided to try and have offspring before I got to a stage where things may not work as biology had designed. A personal note to all males with MS ... you do not have to worry about this ... trust me! It does take longer to ejaculate, so beware .... you will not be done in 10 seconds ... in fact, you may want to set aside a fairly substantial (in male terms) amount of time ... about 30 minutes if you are lucky! But rest assured ... it does not go limp and you will not fire blanks. The strange thing is that my wife does not see MS as a bad thing at all. Anyhow, I digress ....

In 2003, about 3 months before the expected arrival of our first offspring, I was 2 weeks into what is now known as a relapse. The entire left side of my body was paralysed, medically known as Sinistrous Hemiplegia. The first time this happened was probably the most frightening because I didn't know whether this was permanent or not. My first thought was "Would I be able to hold my child?". After 5 weeks there was good and bad news though. The good news was that it was temporary, but the bad news was that the recovery was not complete. After this episode, and subsequent episodes, I noticed a weekening on the affected side of the body, and each subsequent relapse has taken a little more functionality away from me. I know this sounds horrible, but at least I got back functionality albeit in a diminished amount. It could be worse ... a whole lot worse in fact. Again I digress ....

After the first Hemiplegia, I was immediately started on treatment. Stay tuned ...