One Person's Personal Experience and Comments of the Condition MULTIPLE SCLEROSIS

Written & Compiled by Paul Hattersley

MS: MY PERSONAL EXPERIENCE

I am a 47 year-old male and have had Multiple Sclerosis since 1985. The diagnosis was confirmed due to my inquisitiveness after my first symptoms, which was the limping in my left leg followed by slight blurring vision.

Onset

The condition started when I was approximately 25/26. My suspicions were aroused when pointed out by my workmate that something on the radio sounded a little like me and this was a report on Multiple Sclerosis. I saw my local GP who proceeded to send me to the local hospital for a full neurological examination (he has his suspicions MS or a Brain Tumour). After many anxious questions I had a lumber puncture and numerous other tests. The verdict was returned a MS but to be perfectly honest at that time I didn't’t care after all what’s a slight limp.

I had plenty of ignorance on my side, is this a good thing or bad thing?

My vision improved but remained slightly impaired and my limp remained. During this time I had numerous minor symptoms such as numbness in both hands and occasional unsteadiness. I found it hard to keep up with the pace of life and I tended to opt out of physical activities.

Trying to work normally

After only working a couple of years in the self employed sector trying to climb the so called ladder of success in the pattern making, how do you measure success?

I had run my own business which was doing positively well, but as time went on I developed further symptoms thus making me decide to call it a day while the going was good.

A close friend said to me that work was not a bad club to be in and that I should try to attack the problem from a different angle, which I proceeded to do.

I became depressed at times, especially when tried, and also when looking after business affairs.

Whenever I was tired my symptoms would be accentuated and to make matters worse I found that I was becoming tired more and more easily.

I often drop my car keys, and I spilt hot coffee over myself because I had lost sensation in my fingers and position sense in my left arm. I had to seek helping different ways and visited therapy centres etc, slowly increasing my knowledge of Multiple Sclerosis (the condition).

MS Confirmed

Knowing that I did have the condition it was a great relief, but despite this I could not really believe it for some years to come. Other people could see nothing wrong with me, and I feared that they regarded me as a malingerer. I had further episodes of blurred vision, pins and needles in my legs, and frequent attacks of dizziness.

I received much help from family and friends once the diagnosis had been made. They suggested that I worked in an area less stressful

Accepting the Condition

I have now accepted the condition to a greater extent and no longer feel either depressed or angry about it. It has been like a long draw-out bereavement, and I have had to come to terms with loss of health and ability and also to establish new identity.

I eat a diet high in polyunsaturated fatty acids and take six capsules a day of gammalinolenic acid (Naudicelle) daily. I have decided that the evidence so far supports this course of action but I realise that the research is far from complete. I also take regular vitamins supplements. I used to drive a car with automatic transmission, which I found much safer. I also gave a disabled persons (orange) badge to allow me to park as near as possible to my destination (except where selfish people abuse the situation).

I feel it is a must and do support my local branch of the Multiple Sclerosis Society and ARMS (MS therapy centre) and have become involved in setting up a self help group for all kinds of disabilities. This voluntary organisation is called D.A.D Our main aim is to visit various schools and groups spreading disability awareness.

This gives me plenty of job satisfaction and the important feeling of being useful in the community. It has been said that a major problem in coping with MS is how to avoid over-tiredness and yet not opt out. This has certainly been difficult, but I have been well supported by relatives and friends including fellow MS sufferers.

I have been married for 27years and have two boys.

Please remember that we have the condition but partners, family and friends have to live with it, in a way it is an illness without label.

Positive Aspects

There have been positive aspects to the condition. It has helped me to understand myself and many other people more defiantly and to establish my priorities in life. I have chosen not to climb up the career ladder but rather to live simply by my relatives. The condition has helped me to develop an increased sensitivity to other peoples needs, and I hope this has made me a better person.

My experience as a patient with MS has given me an insight and responsibilities of a special kind. I believe that patients with MS should be told the truth as soon as the diagnosis has been confirmed so they can rebuild and continue their life. How this is done will depend on the individuals concerned, but it is essential that all patients receive adequate emotional and social support at a major crisis in their lives.

The support given should include close relatives and must be prolonged for it is in the first few years that the fundamental psychological adjustments are made. The self help groups that now exist in many parts of the country can provide much of this support, but it may take several years before a new patient can come to terms with their condition enough to accept help from other sufferers without feeling too threatened.

I am young, disabled and in a wheelchair with many problems but I still try to smile.

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MULTIPLE SCLEROSIS

WHAT IS IT?

MS is a chronic condition of the central nervous system - (brain and spinal cord).

The damage occurs to the Myelin Sheath

MYELIN

A fatty substance which covers the nerve fibres (axon)
providing protection and insulation.

NEURONE

The body cell containing the nucleus and attached to the nerve fibre (axon).

AXON

The nerve fibre

OLIGODENDROCYTES

These are special cells in the brain manufacture myelin.

The brain’s activity depends on communication between the nerve cells.

In MS, this communication of the nerve cells is attacked by an unknown cause. This therefore results in a failure to carry clear messages to various parts of the body which in turn results in varied disabilities of speech, movement, vision and sensation.

MS often strikes suddenly, and an initial attack generally occurs between mid-teens and middle age.

Onset is rare before the age of 12 or after the age of 50.

MS is not:

Infectious

Contagious

A mental disease

Hereditary

thought it does sometimes run in the family line probably due to their being exposed to a common causative agent during childhood.

Recent research has shown that there may be some genetic factors in the pre-disposition of development in MS.

It is a condition of temperate climates, and is exceedingly rare in the tropics.

The course of MS:

Characterised by series of relapses and remissions.

A RELAPSE - implies either a fresh lesion or reactivation, or an extension of an old lesion.

A REMISSION - The disappearance of a symptom or symptoms - partially or completely.

TEMPORARY EXACERBATION - The appearance of an old symptom or the exaggeration of an existing symptom for a short period e.g. minutes, hours or for a few days.

These attacks can last anything from a few days to many months and may be relatively slight or quite severe. They sometimes occur for no apparent reason or they may be triggered off by:

An infectious illness - injury - Emotional or stressful situations. This pattern of relapses and remissions varies greatly from person to person. In some cases it may follow a more steady and progressive form without such fluctuation.

We must remember that MS is a very variable condition. Some people have a relatively benign form never suffering severe disability.

Some have to cope with varying degrees of disability from time to time and others are more severely disabled by the condition.

CARACTERISTC SYMPTOMS

These obviously depend on the site of the nerves affected by demyelinization.

Blurring or complete loss of vision
Paralysis of eye movement
Double Vision Affecting one or both eyes
Slurring of speech

Numbness
Weakness
Heaviness Affecting one or both legs and/or arms
Clumsiness
Stiffness

Urgency and increased frequency to pass urine.

Unsteadiness of hands or legs.

Impairment of sensation and touch.

The symptoms may occur on their own or a few together any may last several weeks, months or just hours. They might then clear up and the person could feel well for months or years (a remission).

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DIET

Good nutrition is not a cure - but common sense. If your body is fed on fresh foods (as will be listed) this can only help you feel fitter both mentally and physically.

Intensive research has shown that people with Multiple sclerosis have a deficiency of the essential fatty acids.

Examination of people with MS has shown that they have:

Higher levels of saturated (animal) fats.
Lower levels of polyunsaturated (vegetable) fats.

SATURATED FATS; solid or hard - e.g. butter
(Try to avoid these) Packet fats
Lard
Solid vegetable oil

POLYUNSATURATED FATS; liquids oils and those that are extremely soft at room temperature - e.g. sunflower oil
(Try to encourage) corn oil
Safflower oil
Margarines labelled high in
Polyunsaturated fats.

The essential fatty acids belong to the polyunsaturated groups of fats.

Linoleic Acid
Linolenic Acid
Arachidonic Acid

Linoleic acid is the most important, as the other two can be manufactured in the body from using this fatty acid.

LINOLEIC ACID

This Is a polyunsaturated fatty acid, which the body is unable to manufacture, so it must be taken in the diet. This can be attained by using sunflower seed oil capsules, or using a spread like Flora margarine.

GUIDELINES TO FOLLOW FOR A DIET LOW IN ANIMAL FATS AND HIGH IN POLYUNSTAURATES

1. Plan your meals to include more chicken and white fish. If using beef, lamb or pork, choose lean cuts and trim off the visible fat before cooking.

2. Liver is the richest source of arachidonic acid (essential fatty acid) especially pigs liver.

3. Use skimmed milk (obtainable from your milkman on request) ½ pint a day is sufficient to meet the needs of most adults. Natural yogurt can also be taken.

4. Choose low fat cheese such as cottage cheese or occasionally some Edam which is made from partly skimmed milk.

5. Use soft margarine high in polyunsaturated fats e.g. Flora.

6. For cooking and baking use sunflower seed oil; grill food instead of frying.

7. Eggs - about 2 per week, additional egg white may be taken.

8. Eat more fresh fruit and vegetables - REMEMBER FRESH IS ALWAYS BEST.

9. Bread and cereals - use those with high in fibre content, wholemeal, farm bran, wheaten bread and all-bran.

OTHER IMPORTANT FOODS

Pulses - Lentils, beans, whole rice

Honey

Flour - Should be wholemeal and not refined

Soya Bean Flour is alright as long as the oil’s have not been extracted .

Sugar - Should be raw, and not refined.

This means that anything made with refined flour and/or sugar should be avoided, as they have no real food value - cakes, biscuits, chocolate, sweets, e.t.c.

You get all the sugar you need from eating fruit and honey.

Also avoid white bread, instant food mix’s, tinned and packet soups etc.

There are many books available on the market for you to choose from.

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EXERCISE

PHYSIOTHERAPY

The essence of physiotherapy is to make the person as self reliant as possible in moving about and carrying out functions of practical value.

1. Physiotherapy must be assessed for each individual, depending on their condition Over- exertion at this stage may cause further problems, therefore adequate supervision by a physiotherapist is advisable.

2. General practitioners may be able to arrange an out-patient appointment for you at your local hospital.

3. A consultant neurologist may also be able to arrange an appointment. A consultant neurologist is a doctor involved in the study of the brain and spinal cord.

4. As attending hospital can be an exhausting business, your GP may be able to arrange for you to be visited at home by a domiciliary physiotherapists. However, this is fairly rare.

5. Private Physiotherapy is also available, but can work out to be rather expensive.

WHAT CAN EXERCISE DO FOR ME?

A common question which deserves answering.

1. It will help to maintain maximum independence.
2. It keeps muscles strong and strengthens those that are week.
3. It helps to improve co ordination and balance.

NEVER OVER DO EXERCISE - As this will only lead to fatigue.

5 to 10 minutes a day is far better than 20 minutes one day a week.

PLEASE KEEP IN CONTACT WITH A LOCAL CHARTERED PHYSIOTHERAPIST

 

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PRECAUTIONS

ALCOHOL

Although there is no evidence that small quantities of alcohol will permanently affect anyone with MS, it must be remembered that small quantities may cause hazards such as severe impairment of co-ordinated functions, especially increase walking difficulties. As the nervous system is already under attack, further attack from alcohol can prove far more damaging to someone with MS than to someone without.

It is therefore wise to avoid taking alcohol to excess, but a occasional drink now and again is surely allowed.

SMOKING

Although there is no proof that tobacco has a detrimental effect on Multiple Sclerosis, it must be remembered that smoking is one of the greatest health hazards. It is therefore advisable not to smoke at all.

REST

Rest is an important factor since fatigue is an all too common problem. Fatigue can obviously fluctuate from day to day and from person to person also.

Therefore rest periods should be decided by the person themselves, knowing for instance that if they have to be out in the evening, a rest in the afternoon is required.

DEPRESSION

Depression is a natural feeling and response made by an individual, during periods of life.

It is very common for this feeling to occur at the onset of Multiple Sclerosis and at certain times throughout the course of the condition.

Anger, bitterness, fear and loneliness are all met at some time in the process of coping with MS and can expected to hit us at our lowest time.

These feelings we are discussing are not only concerned with the person who has contracted MS but also the family and close friends.

‘Nobody knows how I feel’

‘Nobody cares about me anymore’

Rejection and self pity are also expected as life now has a new meaning.

Do not turn away from your friends and family. Show them that you need and love them.

‘A problem shared is a problem halved’ - this saying is surely good advice. Talk to one another and do not keep your feelings inside.

‘Let me out’

One should always seek advice from a doctor, as to whether treatment for the depression will help, as it very frequently does.

PAIN

Varies from person to person and sometimes does not even occur.

 

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FATIGUE IN MS

WHAT DO WE MEAN BY FATIGUE IN MULTIPLE SCLEROSIS?

Fatigue is a sensation that is both universal to all and very specific to people who have multiple sclerosis. The fatigue that all people experience is due to tiredness and weakness affecting muscles after exercise and exertion. In multiple sclerosis, the fatigue that many people have is rather difficult since the nervous system as well as the muscles are involved.

The cause of MS fatigue is not fully understood and varies from person to person at all different levels and sometimes does not even occur.

WHERE ARE WE?

The current situation in MS research is advancing day to day so the upkeep of information is greatly advised.

SOCIAL SECURITY BENEFITS

Please contact your local benefits Office.

PERSONAL OPINIONS AND COMMENTS

The only common thing about MS is that it is uncommon.

People are individuals or should be treated as individuals.

Get to know the person as well as the disability.

Never accept defeat.

MS is a condition and not a disease.

I am not proud of being disabled but I am certainly not ashamed.

Please try to remember that there is always someone worse then oneself.

In many cases I believe in a second chance the third chance is very questionable.

Treat people as you expect then to treat you.

Usually inside a disability is a hidden ability.

CRYING is a good occasional release.

PLEAE NOTE THIS IS ONLY ONE PERSONS PERSONAL EXPERIENCE AND COMMENTS OF THE CONDITION.

paulhattersley@fsmail.net

 

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