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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.
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.