Living with progressive MS
Gary Allen is a 43-year-old father and husband from Samford, in Queensland, Australia.
In 1994, Gary started experiencing what he knows now were MS symptoms. His balance was affected, along with pins and needles and weakness in his legs.
It wasn’t until 2000 when Gary underwent an MRI, that he received his diagnosis of MS. He moved through the stages of denial and trying to keep himself busy in his job at Queensland University of Technology (in 2003 he moved to working for Griffith University).
Becoming wholly reliant on a wheelchair in 2007, Gary has continued to work as a Policy Officer for Griffith University but has reduced his ‘in office’ hours over the years.
In 2011 Griffith University was given an MS Heroes award for their support of Gary through implementing work-from-home arrangements, modifying his duties, buying special equipment and making various workplace modifications. These have all had a positive influence on Gary’s sense of self-worth and his ability to stay working in an industry he loves.
Summed up in one word, Gary personifies resilience. Despite being wheelchair bound, Gary hasn’t let the many challenges presented by MS rule his life. In Gary’s words, “no one would choose to be diagnosed with a chronic medical condition or relish the prospect of living with an illness with an uncertain prognosis. One of the hardest parts of a MS journey is the uncertainty – no one can show you a chart and say, “you are here, and in ten years you’ll be there.
Christelle is a 43-year-old South African woman who is living with secondary progressive MS. While she has to carefully plan any trips away from the house, she still works from home, she cooks with her husband and she is an active member of the Multiple Sclerosis Society of South Africa.
I woke up one morning, unable to see out of one eye. It was a public holiday in South Africa, so I waited until the next day to see my optometrist, who referred me to an eye specialist, who in turn referred me to a neurologist. The neurologist would not give me a positive diagnosis, as I had only one lesion that showed up on the MRI. She said it was probably MS. That was in 2000.
Two years later, I had needles and pins in my hands. I went for another MRI. This time, about seven lesions showed up and the diagnosis of MS was confirmed.
For the first seven years, I had relapsing-remitting MS, but now it has progressed considerably. I did not have any noticeable relapses the past seven years, just a slow but steady decline in function and mobility. I am no longer able to walk and use a wheelchair even in my house. Fortunately I am still able to get up and down out of the wheelchair to do everyday things like getting into bed, visiting the loo, reaching those slightly higher places in the kitchen. I have no feeling, or the feeling of dead skin over most of my body. My hands are pretty much dead, and dealing with small objects is a battle. My bladder is totally screwed up!
Giving up one’s independence is tough. Many friends visit in Cape Town and where previously I would excitedly pick them up from the airport, they now have to take a shuttle. I have to rely on others to take me out on excursions. Other than that I am pretty much housebound. Fortunately I really like my house and I have no problem entertaining myself. Leaving the house requires very careful planning, it involves investigating the accessibility of the place I’m visiting, including the toilet facilities, getting in and out, parking for the person who drives me there, etc, etc, etc, but as long as I still have people in my life who will help me explore, I will do it. I leave on holiday to the beautiful island Mauritius and whilst it would have been a different experience as an able-bodied person, I still intend to make beautiful memories and enjoy it to the utmost of my ability.
I was on interferon, first Avonex and then Rebif, for about five years and in 2001 I received Novantrone infusions every three months. Since then, I have been on no medication. We wanted to try Tysabri, but unfortunately I tested positive for the JC virus, so the risk was too big. I have very good private health insurance, which helps a lot but, with not many more options to try, I can just be thankful for the life I still have.
I am very fortunate to have Francois in my life. He is very supportive, caring and loving, but most of all he sees me and not MS. He has to do a lot more around the house than before, and he does a lot for me, as I can’t do the things I used to, like picking up medication, buying things I need, and so on. It must have an impact on him, but he certainly handles it with incredible patience and love.
We cook together. I might come up with the recipe, and do the chopping, but he will stand in front of the stove and take heavy things out of the oven.
We have a cleaner who comes once a week, and also does my washing. It is really a blessing to be able to afford this luxury in my life.
Online shopping has to be one of the best inventions ever! I plan my menus, buy groceries according to that, feed my love of red wine with ordering from my favourite wine merchant, use the pharmacy for home delivery and buy beautiful clothes, decor items, etc. to ensure I don’t miss out.
I am still working. Luckily, the company that I work for has been superb. I am allowed to work from home and the company is very supportive. If I need to visit the office or need something brought to me, there is always someone prepared to help.
MS has had a massive impact on my life. I used to love dancing, but can do that no longer! I was very ambitious, competitive and career driven, but now I focus on the here and now. One day at a time is the best way to keep your mind strong.
Whilst I am no longer a committee member of the Multiple Sclerosis Society of South Africa (Western Cape) I still get involved in some of their initiatives. It is great to be able to speak to like-minded people who are affected by the same challenges. It has also opened up the eyes of my family to become more involved and some have even come up with their own fundraising ideas.
Sign up to our e-newsletterfor updates from our growing global initiative to end progressive MS
Clicking submit confirms that you consent to MSIF sending you the Progressive MS Alliance newsletter