GYMS Newsletter Jan 2001

Hi Folks, Happy New Year to you all!!!

If you're anything like me you may be feeling the cold just now so make sure you turn your heating up and wrap up warm. For some people with MS it's hot weather that gets to them, and for others like myself it's the freezing cold. I have to count my blessing though having escaped to the sunny Florida Keys again at the end of the year! Remember MS doesn't have to stop you!

Some of you may have read about the launch of our 'Group for Young MSers' (GYMS) in the local press. We don't yet know exactly how this group will develop. That one is up to us! I hope it will be a point of contact, keeping you up to date with the latest MS News from the internet, about the various drugs, research developments and alternatives therapies for MS, so you know you are not alone with the condition. Maybe people would like to develop a pen-pal service for support and the sharing of experiences and ideas? This newsletter is also for you so please send in your contributions, tell me how you are feeling and coping with MS, the 'uninvited' guest in your life, or any of the mad things you are up to!

We are meeting up for the first time in the Skyline Suite at Ponds Forge on Mon 12th of Feb, 7.30 pm. Can you think of any other venue where you'd like to meet, a good pub maybe? We are at present seeking funding from the MS Society (thanks David!) and other avenues, but will be looking for local sponsorship and maybe to doing some crazy fund-raising events? Any offers? (I've done the skydiving, maybe abseiling off the Hallamshire this time?) Let's really change the image of MS and get away from that of the 'MS victim'. It makes us seem so powerless, which is not the case! Through knowledge, experience & support we can and will TAKE CONTROL! Sylvie (Editor)

Fear of the Unknown

Scared to fight Scared to lose Scared to cry

Scared to go it alone Scared to live or die Scared is just another name for fear

Is what we fear just fear of the unknown?

Finding this out is the beginning, The beginning to beating our fears. Acknowledging the fears of our lives is a start

Believing that fear can be conquered is the next step Working to conquer the fear is the next step Winning and fighting the fear is the final step

No matter how you get to the end, Believe it is POSSIBLE Believe in YOURSELF and OTHERS. Believe that you are never alone,

Never let fear stop you from living, It is fear that lets us know we have something to work on An obstacle in life we need to overcome. Overcome you will if you believe.

Facing fear is difficult but can be done!

David Leanardo David's Positive Quote!

"With great numbers we gain strength, with great strength we will conquer this disease. We are NEVER alone!"

Web-site: www.peacestrength.com/index.htm

STRESS-BUSTERS

SELF-INDUCED STRESS: Be conscientious about your program, but don't obsess about it. Be kind to yourself and remember that you are a work in progress. Congratulate and reward yourself for your successes, and learn from your temporary setbacks.

EXERCISE: is probably the best stress buster of all. Find the program that works for you, and then be diligent about it. If you haven't found the program that works for you, don't use that as an excuse to do nothing. Remember that sitting in the bathtub and fighting the current isn't exercise! Get your body moving doing some form of exercise. Over the years I have found that modified yoga is the very best exercise for me. It is also important to choose an exercise that does not heat your body. If you are perspiring, you are heating your body and it is important to avoid that heat. Whatever form of exercise you choose, I suggest you give yourself one day off each week. That will help keep you on track the rest of the week.

MEDITATION: is a very important part of my personal stress-reduction program. It is impossible to meditate and be stressed at the same time. The meditative state is one of profound relaxation. Meditation is simply stilling the "mind chatter" so that one can tune into the infinite part of one's nature. Profound experiences are possible once we reach that state. Chapter 6 in my book From MS to Wellness details meditation.

GET OUT OF THE HOUSE AND DO SOMETHING FUN: If your disability keeps you mostly housebound, this is especially important. It is extremely important to be involved in something about which you are passionate. Look at your schedule and see where you could cut back, in order to give yourself more time for stress-reducing activities.

SUFFICIENT RESTFUL SLEEP: My personal need for sleep is 7-8 hours per night. Two or three nights in a row of 6 or so hours, and I begin to feel sleep deprived, and my body does not function at peak efficiency. When the body sleeps it renews itself, and if you do not get sufficient rest, your body will suffer.

LAUGHTER: is probably second only to exercise as a stress buster. Pick up a copy of Norman Cousins' famous book, Anatomy of an Illness. After reading this book, you will never again view laughter is unimportant in your life. Buy yourself a great joke book and/or some slapstick videos. Watch the comedy channel on television. And don't forget to smile. A smile is the harbinger of laughter, as surely as day follows night. Why not join the "Smiles Club?" Everyone is welcome, admission is free, and it pays big dividends!

"Life is full of cactuses, but you are not obliged to sit on them!" Dan Millman

Betty Iams- Journey to Wellness newsletter

Website of the month!!!

Betty Iams, Editor of 'Journey to Wellness', an international monthly newsletter for people Living with MS. Visit IAMS HOUSE, USA http://home.san.rr.com/iamshouse E-mail biams1@san.rr.com San Diego, California - Betty's House . . . Author of 'Life After MS'- An essential read for anyone with MS and www.I-Home-Biz.com

Are you eating the right types of fats?

Eating the right types of fats, could be one of the most important choices you make in living with Multiple Sclerosis. It is important to reduce the Saturated fat content in your diet or eliminate them completely. Why is this you may ask? Well saturated fats (solid at room temp) is actually known to promote inflammation, suppress the immune system and stimulates allergic response[1]

A few years ago knowing I had MS I used to joke 'I can eat what I like, well I'm not about to die of high cholesterol'. WRONG! I was completely UNAWARE of the damage I could be doing to myself eating all that fried food. Many people with MS world-wide have benefited from a low-fat diet such as that proposed by Roy Swank.

More and more we are hearing about the importance of Essential Fatty Acids (EFA's) in our diet. But what are they, how can you get them and why are they so important to people with MS? Well as their name suggests they are essential to life, yet they cannot be manufactured by the body and must be obtained through diet. A deficiency in EFA's is also now thought be a contributing factor in MS. MS certainly tends to be less prevalent in regions where oily fish (which contain EFA's) is part of the staple diet. EFA's are found in polyunsaturated fats (liquid at room temp). They prevent inflammation, enhance the immune system & block allergic responses. Without these EFA's the immune system cannot function well and cells and organs degenerate so they are pretty essential![1]

There are two types of EFA's, the Omega 3 & the Omega 6 fatty acids. Good sources of Omega 3 are Oily fish (mackerel, salmon, sardines, trout, herring, kippers), and Flax Oil or Seeds. For MS Professor Crawford recommends three meals with oily fish a week. Many people with MS take EFA supplements in the form of Evening Primrose Oil (EPO) for Omega 6, and Fish Oil for the Omega 3s. The best form of Fish oil comes from Salmon or Mackerel. Cod Liver Oil can also be taken but please be careful as this can contain Vitamin A (Do not exceed the RDA).

Another great source of Omega 3 is Flax Seed Oil. You can buy as capsules or as oil which makes a delicious salad dressing. For cooking Extra Virgin Olive Oil or Seseme Oil is best. Processed or refined supermarket oils are potentially harmful, as they are very unstable and contain Trans-Fatty-Acids (TFA's) that are now thought to damage DNA, promote cancer, inflammation and the degeneration of nerves [1] . Olive oil however largely contains the much more stable Monosaturated fats, very few toxic by-products from the extraction process and it tastes delicious too!

Editor (Sylvie)

MS FACTS

Evidence suggests MS results from an auto-immune process in which immune cells (T cells) mistake myelin (the fatty coating around nerve cell fibres in the brain & spinal chord), for a foreign invader and attack it.

*MS is the most common neurological disorder among young adults.

* Initial symptoms of MS generally occur between the ages of 20 and 40.

*There are an estimated 85 000 people with MS in the UK, & $250 000 in the USA.

*MS is more common in women than men by a ratio of 3:2 (hormonal factors may explain this).

* Blurred or double vision is often the first symptom of MS (but doesn't mean you have it!) &About 1 in 1000 people in the UK have MS.

* MS in NOT HEREDITARY but there does appear to be a GENETIC PREDISPOSITION towards the disease. As many as 20% of people with MS (PwMS) have at least one relative with the disease.

*If one of your parents has MS, the chances of getting it increase to 1 in 50 (still pretty unlikely)

*Around 15% of PwMS have a Benign form. Symptoms are mild to moderate and do not worsen or lead to any permanent disability.

*About 25% of PwMS have a Relapsing-Remitting (R-R) form, with 1 or 2 flare-ups every 1-3 years. Relapses can last hours, days, weeks or months and vary from mild to severe, followed by Remission.

*Another 40% of PwMS develop Secondary Progressive MS, which starts of as relapsing-remitting, but then turns progressive, usually within 15 to 20 years of the first onset of MS.

* The other 15% of PwMS have a Primary Progressive (or Chronic) form, whereby they experience a steady worsening of symptoms.

Ref: [1]What is MS? MS Soc.Leaflet [2] Advances in Multiple Sclerosis, Chemistry in Britain, Aug. 1999. Pg 33-36.

Upperthorpe Aquagym

Did you know that there is an Aquagym at Upperthorpe Swimming Pool? So not only can you go for a swim but also have a good work-out, and it only costs you £1 to use this equipment. The Aquagym consists of Multi-gym equipment, like in a normal gym, but it's all in the water! The beauty of it is that you can work your muscles in the warm water, which also supports you as you do so.

The pool is very disabled friendly, wheelchair access, a ramp and chairs to wheel you down into the pool, a hoist and a variety of floats. There are a range of different Sessions, so you can choice which one is right for you , Adults only, Casual Swim, Splash Session, Mixed Aquarobics? The disabled session suits me best because the water is slightly warmer, and my Carer gets in free, which makes me pretty popular!

To use the Aquagym you have to first book an induction session which costs £4 (including the price of your swim) and takes approximately 30 minutes. After this you are free to use the equipment whenever is in 'session'. If you have a severe medical condition it is advisable to consult your Doctor first before embarking on any form of exercise. For more info contact the pool on (0114) 203 9006. on (0114) 203 9006! Pic: Sylvie on the Aquagym (I'm a regular!)

Disabled Sessions

Tues 3-4 pm Thurs- 10-11 am Sat 12.15- 1 pmPrices: Standard Leisure card Gold card Adult £3.00 £2.50 £2.00 It's even cheaper if you buy a book of tickets. You get 7 swims for the price of 4!

Machines-

Aquacycle-Legs & bottom Aquarower- All muscle groups Aqua Stepper-Whole leg & bottom Aquaclimber-Upper & lower body Aquaabs-Legs, knees & stomach Aquastrider-Legs & lower back Aquapulldown-Arms, shoulders & Upper back

'Mock cannabis' found to ease MS

Tim Radford, Science Editor, Guardian, Thursday March 2, 2000

Scientists have proved that cannabis-like drugs can alleviate some of the worst symptoms of the progressive disease multiple sclerosis, bringing hope to the 85,000 or so sufferers in Britain. There have been claims for decades that cannabis could help MS patients with spasticity and tremors. But scientists from London, Aberdeen and South Carolina report in Nature Today that they have direct proof that a cannabinoid compound used on mice with a multiple sclerosis-like condition helped ameliorate symptoms within minutes. "Although not a cure," said David Baker, of the institute of neurology at University College, London, "our research suggests that cannabinoids can play a crucial role in controlling some of the neuromuscular problems seen with MS." Lorna Layward of the Multiple Sclerosis Society said: "The study provides a firm basis for the human trials of cannabis in MS that will commence shortly." * These trials are now underway*

Water-Are you drinking enough?

Many of us may already be aware of the importance of drinking enough water, Many people who experience continence problems stop drinking but PLEASE DON'T. You will only end up dehydrated and may get a urine infection, which can trigger an MS relapse. Signs of a urine infection are cloudy & smelly urine & it may be painful to pass water.

Signs of dehydration to watch for are dry skin, dark yellow urine, dry mouth, flushed skin & fatigue. Health experts now recommend drinking at least two litres, that's 8 glasses of water a day and it really is water that is best for you too. Maybe you think you drink plenty of fluids with cups of tea, coffee and soft drinks. But tea, coffee and alcohol are diuretics & actually take water away from the body. This we don't need especially if we have continence problems.

They also flush out essential vitamins and minerals from the body. So what are the alternatives to tea and coffee? Let's face it we don't want to do without a good cuppa! Well I found that it wasn't the actual tea, but it was the habit that mattered. So I started drinking herbal tea and especially Green tea, which is better for you being low in caffeine and containing anti-oxidants. Or maybe try another tea called Roobibush (Redbush) Tea, which also contains healthful antioxidants and is actually caffeine-free. There are lots of alternatives!

Ref: New Pathways, Pg.30, July-August 2000 www.msrc.co.uk

Thoughts from Daniel!

There are all sorts of illnesses and diseases that plague humanity. Yes we have been diagnosed as suffering from MS. But it could have been anything else. Rhumatoid Arthritis, Crohns disease, Cancer or who knows what. The truth is that if you go all the way without catching anything, you've hit the lottery Jackpot.

The problem with MS is that it can feel so completely overpowering and that the orthodox medical establishment has catalogued it as incurable. Yes it might be incurable by the drugs and medicines currently used by the orthodox establishment. But there are indeed a hell of lot of alternative medical techniques which might offer a way to either cure it or make it a bit better.

And remember that there are no two cases of MS the same. Each one is different. So if Accupunture doesn't work for you Homeopathy might or something else will. The secret is never to give up HOPE and always keep our chin up. The state of mind is definitely the must important thing around MS.

Remember Keep happy at all times!

Daniel Buchsbaum Email: Buchsbaum@cwcom.net

Corticosteroids & MS?

For more than 30 years Corticosteroids have been used to manage MS Relapses, but there is still considerable variation in how and when they are used. Corticosteroids, such as Methyl- prednisolone, commonly used by MS patients, are related to Cortisol, a hormone which occurs naturally in the body. Although they can be effective in hastening recovery from a relapse they do not in any way 'fix' the problem and prevent further episodes of MS from occurring.

During an MS relapse there is a breaking down of the 'blood brain barrier' (BBB), so that harmful substances from the bloodstream can cross this barrier and reach the brain and spinal cord. The steroids are thought to help stabilise the BBB and help close up this leaking. They also reduce the inflammation in the central nervous system so allowing the brain signals to be transmitted for 'normal' body function again.

Corticosteroids are also Immunosuppressive. This means that they reduce the activity of your Immune System. A healthy Immune System helps defend your body against Bacteria, Viruses, and Cancer. However with Auto-immune diseases the Immune System goes starts attacking it's own organs or tissue, in the case of MS this is the myelin sheath which coats the nerves cell fibres in the brain and spinal cord. In these diseases, Corticosteroids can help by decreasing the harmful auto-immune activity.

However, they also decrease the body's helpful Immune activity, which can increases susceptibility to infection and interfere with the healing process. The long-term use of Corticosteroids can be very harmful, disrupting and weakening the immune system, with the danger of developing Osteoporosis (brittle bone disease). Other long-term side effect are weight gain, 'moon' face', muscle wastage, Diabetes, bone fractures, acne, skin bruising, Cateracts, Peptic ulcers and wounds taking longer to heal.

For this reason Doctors generally do not administer them that frequently and even then only after a 'major' relapse. The majority of UK Neurologists will administer them intravenously (1g daily for 3 days), but they may also be taken orally. During an infusion some people experience a metallic taste in their mouth. Other short-term side affects can include increased heart-rate, hot flushes, a red face, sleeping problems, mood swings or even a sense of euphoria.

Ref: MS Matters article