Jooly's Joint: people with MS supporting each other

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Graham, Australia Australia

GrahamIntroduce yourself!

G'day all. As you may have guessed, I'm Australian. Most people know me as 'Hennry' while my real name is Graham.

I'm 38, and extremely wealthy. No, not money but assets, as I'm married to a wonderful women, Robyn (aka HG) who cares for me along with 3 great kids.

I live in a relatively small rural town in southwest New South Wales. I work 50 hours a week in a great job where fexibility is a key to the rewards.

I'm on Rebif 22, having switched in March 2000 from Avonex after 11 months . I've been on Prozac for several years.

When did MS enter your life?

In April 1995, I went to my local optometrist as I had blurred vision and extremely painful eye movement. This was quite a morning as she asked me a little bit of my medical history. I told her what I thought were totally irrelevant things (glandular fever when I was 20, cardiomyopothy aged 21, bouts of altered sensation, pain, and pins and needles from age 26 onwards, episodes of fatigue that none of the doctors could explain except to suggest I was working too hard - does all this sound familiar?!).

Seven years on the medical merry-go-round finished that day when she said, 'hold on to your hat, I feel that you may have multiple sclerosis'.

Within two weeks, I'd lost the sight in one eye, seen opthamologists and neurologists and had an MRI.

What do you now know about MS that you wish you'd known when you were diagnosed?

I will have to admit that until that day I knew absolutely nothing about MS. I thought I had a brain tumor or something like that. Diagnosis was actually a relief, as so many questions were answered and I could hop off the merry-go-round.

Lowest point in your life with MS

There are many lows and many highs with MS. Sadly, the lows are very low.
Before I was on any medication I was like a bear with a very sore head. I was so angry and my family suffered very much. But I guess the lowest point was contemplating suicide.

Highest point in your life with MS

On this emotional roller coaster the highs are exhilarating. There are many highs, the greatest being the wonderful people I have met on the MS scene.

The Internet has opened up to me great corridors of people who share MS. Jooly's Joint has brought me to tears of laughter as well as empathy, and the bash in Vegas in 1999 was the high of highs.

What do people with MS need to help them enjoy fulfilling lives?

One word: friends. Friends who understand as only true friends can.

When and how did you discover Jooly's Joint?

When I was diagnosed I didn't have access to the Net, but since getting online my thirst for information is never satisfied.

I found Joolys Joint in 1996 when looking for a chat site, but time differences made it difficult for me to join in. I rediscovered the site in 1997 when the support board started up and information really started to flow. The chat room was alive with people I still call dear friends.

What keeps you coming back to Jooly's Joint?

The people are what makes a community strong or weak. Strength and support is what I find in Jooly's Joint. The people here are so good. I have talked to lots of doctors around the world and their eyes open wide when I tell them about our community. Some in awe, some in envy, and some with distrust.

What are your ambitions?

When I left school I was asked what I wanted to be. I answered 'an aircraft engineer'. I achieved that and am quite well respected in my field.

Two years after diagnosis I noticed the decline in my body's ability. Use of my hands is my life, so I decided I would further eductae myself so if I lost use of my hands, I'd be able to use my brain instead. I went back to school to get a degree in Aviation Management and Physchology. In the third year I went from distinction grades to being unable to complete assignments, so I deferred the year. I'll decide what I'm going to do at the end of this year. At the moment it's not looking real good for my studies.

As for ambitions, one day at a time. I am at ease with life at the moment and every time I try to push the boundaries, they come crashing in on me. I still have to learn to cope better.

What message would you give to newly diagnosed people?

Over the last three years I've met many newly diagnosed people. My message to them is the same: MS is not an ending, it is a new beginning. It's just that the rules have changed.
"Well tell me rules!" is the response - now that's the hard part! Everyone's set of rules are different but with a common core. Only education and experience will help you set your rules of life. Go out and live and enjoy life. MS is just another obstacle to overcome. Life is what you make it.

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