Multiple sclerosis is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms.
Disease onset usually occurs in young adults, and it is more common in women. It has a prevalence that ranges between 2 and 150 per 100,000.
MS affects the ability of nerve cells in the brain and spinal cord to communicate with each other effectively. Nerve cells communicate by sending electrical signals called action potentials down long fibers called axons, which are contained within an insulating substance called myelin. In MS, the body’s own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer effectively conduct signals. The name multiple sclerosis refers to scars (scleroses—better known as plaques or lesions) particularly in the white matter of the brain and spinal cord, which is mainly composed of myelin.
Although much is known about the mechanisms involved in the disease process, the cause remains unknown. Theories include genetics or infections. Different environmental risk factors have also been found.
Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability. MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or slowly accumulating over time (progressive forms). Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances.
There is no known cure for multiple sclerosis. Treatments attempt to return function after an attack, prevent new attacks, and prevent disability. MS medications can have adverse effects or be poorly tolerated, and many patients pursue alternative treatments, despite the lack of supporting scientific study. The prognosis is difficult to predict; it depends on the subtype of the disease, the individual patient’s disease characteristics, the initial symptoms and the degree of disability the person experiences as time advances. Life expectancy of people with MS is 5 to 10 years lower than that of the unaffected population.
The prognosis (the expected future course of the disease) for a person with multiple sclerosis depends on the subtype of the disease; the individual’s sex, age, and initial symptoms; and the degree of disability the person experiences. The disease evolves and advances over decades, 30 being the mean years to death since onset.
Female sex, relapsing-remitting subtype, optic neuritis or sensory symptoms at onset, few attacks in the initial years and especially early age at onset, are associated with a better course.
The life expectancy of people with MS is 5 to 10 years lower than that of unaffected people. Almost 40% of patients reach the seventh decade of life. Nevertheless, two-thirds of the deaths in people with MS are directly related to the consequences of the disease. Suicide also has a higher prevalence than in the healthy population, while infections and complications are especially hazardous for the more disabled ones.
Although most patients lose the ability to walk prior to death, 90% are still capable of independent walking at 10 years from onset, and 75% at 15 years.
Give these tips a thought … they might just make your life a bit easier!
Use rubberised cloth as a place mat to put underneath your crockery to prevent it sliding around. These cloths come in handy when using a mixing bowl, it won’t spin round.
Place frequently used appliances i.e. toasters, egg boilers, sandwich toasters, etc. on counter tops instead of storing them in cabinets.
Consider replacing your manual appliances with electrical appliances i.e. tin openers, meat cutting knives, blenders, etc.
A cutting board with prongs or spikes will provide grip when you place food items on it to cut.
Line baking pans with foil to minimise clean up.
Use serrated steak knives for cutting foods during mealtime, keep them sharpened – it is safer to use than blunt knives.
Place two tight rubber bands a centimetre or so apart around a drinking glass, it will make it easier to grasp and hold onto.
Put a bar of soap in the foot part of pantyhose, knot the pantyhose around the tap, your soap will now be easy to reach without slipping out of your hands and the hose can double as cloth.
Bathtub and shower handles will help you to balance and hold onto when you enter slippery areas. These “Safe-er-Grip” handles have easy flip-up release tabs for stress free installation and removal. Suction cup design is easy to attach, remove or relocate. Obtainable at Mica Stores.
If you are keen on a shower, consider the use of a shower caddy, a basket that can either hang from the shower head or can be attached to the wall. The container will hold your soap, shampoo and other goods and prevent you from having to bend down.
Use decorative non slip tape or decals on the shower floor to prevent slipping.
If you use a rubber mat, remember to put it into the washing machine regularly to prevent slippery soapy build up.
Pop-up tissues are easier to grab than flat lying ones.
Substitute your face cloth with a wash glove or soft sponge. They are easier to use when your hands are weak or clumsy.
Turntables in the bathroom (or even your cupboards) will make items easy to retrieve.
Select and lay out your clothes at the end of each day. If you should need help with buttons or zippers you will get your family’s support before they all leave for work.
Use Velcro to replace buttons or other fasteners – close the existing button holes and work the button on top of this space. Then sew the fuzzy soft side of the Velcro on the underside of the “closed up” buttonhole, sew the other side of the Velcro where the button used to be and Voila!
Tube socks are easier to put on than socks shaped like a foot!
Have loops sewed on in the inside of each shock – use the loops to pull up your socks.
Rub the soles of new shoes with sandpaper or scrape the soles on uneven surfaces to prevent slipping.
Clip-on earrings or pierced earrings on a hook that do not need a back works best for clumsy hands.
If you battle to grip your pen/pencil, either wind a few elastic bands around the pen stopping just beneath the position where your fingers will rest, or buy pencil grips at Dischem.
Use Post Its royally! Stick them up to remember birthdays, appointments, or general reminders such as “dustbins Mondays”.
Have stickers made with your name, address and telephone number on to be used when you have to fill in forms or supply your information.
To remind yourself to take your medication first thing in the morning, put the pill bottle into your slipper. Before you can put on your slipper you need to remove the bottle!
A small spiral notebook with pen/pencil stuck into the spiral binding will help for short reminder and other notes.
When you are out and remember you have to do something when you get home, call yourself on the home phone and leave a reminder.
Have to take a number down and writing is a problem? Leave a calculator next to the phone and punch the number in so that you can write it down after the call. Clear the calculator after you wrote the number down.
I’M OKAY – YOU’RE OK!
Manage yourself and your MS well, and you will be in control of the situation.
If YOU are in control, it will put your family and/or caregivers at rest as well.
Keep the balance in your life right. Prioritise, eliminate, consolidate and streamline activities in all the aspects of your life.
You have to look after YOURSELF. Be sensible about time management; prioritise those things that are important to you and your family. Eliminate unnecessary and difficult tasks, rather delegate them. Give yourself permission to rest, do not feel guilty about putting your feet up, you will be rewarded the following day with adequate energy levels.
Stay healthy with a sensible diet. Eat regularly, eat right, snack with healthy foods, and do not skip meals.
Arrange your home to suit your own physical needs. Furniture placed in strategic locations can be helpful to lean on as you move from room to room.
Outsource when you need help. It is not a sign of weakness, rather excellent time and energy management.
Use technology! Get remote controls to open and close doors, switch lights off and on, cordless phones, speaker phones, answering machines…!! Too many to mention! Your PC is a good tool to organise your finances, keeping your records, keeping in contact with family and friends, etc. etc. If you are going to be more housebound, at least make it comfortable for yourself.
When shopping, use the trolley to lean on for stability and also as energy saver.
Have an open mind. Assistive tools/devices/gadgets can be expensive, but with a little bit of imagination and resourcefulness you can make your own “gadgets” to suit your pocket.
For more information, visit www.multiplesclerosis.co.za