Living with multiple sclerosis

JORDANNA FUGMAN

I am Jordanna (Jodi) Fugman. My parents are Jack Fugman and Joni White, and I’m the granddaughter of Harry and Helen Fugman and Leonard and Toots White. This is my story with primary progressive multiple sclerosis. I share this story and my personal struggles as there are not enough people doing so and, the more people to know, the better. Knowledge is key.

I am 40, single with no children. All I’ve ever wanted is to have a family of my own. Many people with MS have children, but I can barely do the smallest of chores without being totally exhausted – it would not be fair. I am very fortunate to have a twin sister who happens to have the two most incredible children, so, there I have them without all the hard work. I love them as if they were my own.

I was diagnosed in October 2010 at the MS clinic at the University of British Columbia. My appointment was from 9:30-2:30 and at 9:45 my doctor said, “My dear, you have MS and have had it for some time. We need to treat you aggressively.” My mother was with me, and started crying. I was crying but not from sadness but relief. For years, many people thought I was too sensitive or needed to be more active. I knew there was something wrong.

When I was first diagnosed, I was told I had relapsing remitting MS. RRMS describes a course of MS characterized by unpredictable but clearly defined episodes during which new symptoms appear, or existing ones get worse. These “episodes” are also known as attacks, exacerbations or flare-ups. Typically, attacks come on over a few hours to a few days, and last anywhere from at least 48 hours to a few months. The hallmark of RRMS is the recovery, or “remission,” that occurs between attacks.

I was given IV Prednisone to try and give my system a boost, which it did. Then I was suggested to start Interferon, which is an injectable drug, or possibly Mitoxantrone, which would be administered with an IV. I was extremely overwhelmed and wanted to do some research. I decided I wanted to try a more organic approach: a strict diet of no sugars, no dairy, no wheat, no yeast and no alcohol. Things kept progressing slowly, never really easing up. Every few months, I would go for more steroids, which would give me a little relief but would never last that long. I went back to see my doctor and decided to start Interferon. At this time, I had been living in Montreal, so I started the medicine there and it gave me no relief; in fact, I felt worse. I had to move back from Montreal to be close to my family, as I was not doing well. I started at GF Strong for rehab, which was great for relief of stiffness/spasticity.

In August this year, I went to see a doctor at the MS clinic about possibly starting Mitoxanthrone. I was told that this treatment didn’t give much relief for those with primary progressive MS. After looking at my history with the disease, this was the final diagnosis. Again, later, after going home and reading the description of PPMS, I knew that this was me. No real break, just a slow, constant progression in the beginning now; 10 years on, moving faster and taking more of me in its wake.

When I returned to Nelson just after my birthday, I was admitted to hospital for a week as I could not use my legs. My good leg (left side) would just buckle with pressure. I thought I would never get out of bed. However, I am out of the bed – but it’s with a whole new world of toys. I have a walker, two ankle braces and walking sticks and a wheelchair. Before, I swore if it ever got to this, life would be over for me, but it’s all a process, and I have been so lucky to have amazing support from friends and family, who help me laugh through each step.

PPMS is characterized by a slow accumulation of disability, without relapses. It may stabilize for periods of time, and even offer minor temporary improvement but, overall, there are not periods of remission. Approximately 10 percent of people diagnosed with MS have PPMS and it is the only form of MS to affect men and women equally. PPMS tends to be diagnosed after age 40.

Looking back, it’s been so quick. I’ve really been on a fast decline since 2010. Just before then, I was traveling the world still, often alone, or with friends. I would walk everywhere, explore my surroundings. Well, especially to find the best shopping area and the best spot to lounge in the sun – my two absolute loves – and meeting and making new friends.

My world has completely shrunk. I go on small walks to the car or in the grocery store with assistance, but long are the days where I could run around on my own schedule. If I feel like a coffee or a bite to eat, I can no longer stop on my own to get it, so I usually go without. It’s so hard to just stop living the life you knew. I do sometimes just push through the pain and do the little things, paying for it later, as I will be in bed for days sleeping. I can’t do my own grocery shopping, nor cook a whole meal, or I would be totally exhausted. So frustrating! Every day, I am in pain, from nerve pain to stiffness; the worst is while I am sleeping. I never realized how much pain I live with until I had the steroids and, for a few days, there was no pain. You get used to living with it. If it’s not pain with walking, I feel extremely drunk, my balance is way off. My instinct is to get down and crawl to where I need to go.

I’ve always been into fashion and beauty. This was a large part of my life, for me and my sister. This is something I am finding difficult to let go of, I don’t want to. I have days when I am in pj’s, but I still try to make an effort to do my hair and make up, as I find it lifts my spirit. I’m always telling my friends, “If I am going to be disabled, I am going to try and do it stylishly.”

I try to stay positive, and I do tend to keep a brave face, but sometimes you have to mourn. I have done this more lately, as I now accept that this is here and not going away. I mourn my old life, all the things I took for granted. I mourn the friendships I’ve lost.

I travel between Vancouver and Nelson. My sister and her family live in Nelson. I love it there but, as my mobility has gotten worse, it is impossible to get around in the colder months. So, I live in Vancouver with my mother for the winter, close to hospitals and, of course, less snow.

I am currently on disability but $900 doesn’t go far. I have no savings and my family has helped as much as they can. The thing is that I never thought I would have to stop working so young, 38. When I first stopped work, I thought it was going to be for a month or so, I had no idea what was to come. I recently tripped and hurt myself badly. Though I have recovered from this injury, looking forward, I am thinking that I might need assisted living sooner than expected.

While I was in the hospital an old friend of mine, Scott Meyers, who I’ve known since when I first moved to Nelson, called me and then contacted my sister. They discussed an online fundraiser, as it would reach far more people that way. Its purpose is not only for donations but to finally let people in on the truth of my journey, and people have reached out with comments of encouragement. The funds raised will be used to help with future basic living costs and possible changes to my living arrangements.

If you can help, please visit giveforward.com/helpjodilivewithms. For more information, please call 604-298-3909 or e-mail [email protected]. The fundraiser ends Nov. 10. Thank you.

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