My story: how connecting with others helps me heal

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Howard is 86 years old and was diagnosed with MS in 1979. He lives in NSW with his wife and is an active member of his local MS support group.

My MS diagnosis at the age of 45 was to signify a change in lifestyle and sporting activity; my squash courts had to go, along with my own state-level squash involvement. In the first three years, I had vision problems and pain and stiffness in my legs. You need speed to be in the squash court and with MS affecting my legs, that was the end of that.

After selling the squash courts, my wife and I moved to the Gold Coast in Queensland on the medical advice of my specialists as they thought a quieter lifestyle would be good for my MS. In part, they were correct. I got involved with a small group of MS people and formed an MS support group on the Gold Coast.

My wife and I spent seven years on the Gold Coast and only returned to Sydney when the extreme humidity was having an effect on my MS. I have found that with MS, you make a lot of decisions that aren’t always correct. One good thing that occurred for me was meeting people at the MS organisation in Woolloongabba in Queensland where I had impressed on me the benefits of exercise, particularly cold water exercise.

On returning to Sydney and joining the MS group in Cogra, I continued with my cold water exercises (particularly walking) until, over the past six months at age 86, my MS caught up with me and I gave up driving and enlisted the support of a power chair and scooter to live as normally as possible.

My wife and I live in a wonderful retirement village in Heathcote, Sydney. Our lifestyle is nothing like we used to have but we have a good group of friends; my wife and I go out to lunch quite often and we lead as normal a life as possible.

Being part of a support group in Queensland and then Sydney has been important in not only helping myself but helping others at the same time. In my first support group in Quennsland, some people didn’t want to try the cold water and they didn’t want to do the exercises and I’m afraid they dropped out and they were seriously affected by MS. This gave me even more incentive to keep up with my own regime.

The cold water seems to calm your nervous system and you definitely feel better after having done a little bit of exercise which in turn, helps your MS. I tried the heated pool once at Caringbah and I was flat out walking from the pool to get back to the car, so I never tried that again!

All of last year, because of COVID, I couldn’t participate in the cold water, and I do hope that I can start using my power chair and scooter to get back to the pool soon. I just had a bit of a relapse which was caused by something else entirely. That alone can affect your MS.

If you let MS get on top of you, it only exaggerates the problem, but if you keep yourself active mentally and with friendships, you can live well. I did five years of driving for the community transport in Engadine, I’ve recently had to give that up because I was getting a little worse than the people I was driving around!

Keeping active mentally and physically, doesn’t matter how, they are the main things in handling MS. Last year during the COVID lockdown, I kept in touch with my MS support group; they’d ring me, or I’d ring them. That was important in keeping well. I’m the only male in the group and the oldest and I’m a bit of a father figure to the girls. Some of the girls are in their seventies, three of them are in their forties and I try and impress on them the importance of staying involved, of not giving life away. They see me and it gives them encouragement. They keep on turning up to the meetings anyway so I must be doing something right!

Get involved in anything, keep your mind active; It helps to keep balance in your life. I think if you hide away in the corner, it doesn’t help at all. Try and live as active a life as you can, not only physically but mentally as well.

Having someone to love is great. I have my wife beside me, and I have my daughter and son who both also live in Sydney, and they give me support. I keep mentally active. I correspond with my other son who lives in Portugal, and we do a word game on Facetime, which keeps me on my toes. Going back a few years, (he was 12 at the time), he’d always make sure I had a chair handy; the help was well received and he’s the same boy whose now 50 years of age and we do spelling and all sorts of things in this word game that we use Facetime for.

Looking back, I’ve had a wonderful life. I’ve had a wonderful family supporting me, this is very important. As the years have rolled on, I’ve lost all my brothers, and that’s a blow, that’s why you need your family, to support you in bad times. Staying positive is more or less the golden rule with MS. If you keep being positive, you’ll pull out and live a life that’s better than it would have been.

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