“Did I think for one minute that this would be me? Never.”
Scott and Denise Halpenny met in 1978 and started dating soon after.
“She was a bright and fun girl – she still is,” Scott says, “and that’s why I was attracted to her.”
Denise Halpenny, a former laboratory technician at South Huron Hospital, has had multiple sclerosis for 21 years, but the last four years have been the worst. The disease has taken away her mobility, and she is now struggling to preserve the last bastion of her independence: the ability to use her left arm.
“I feel like she’s been short-changed,” Scott, a physical education teacher at South Huron District High School, says. “I wish it could be different, but it can’t. If she loses her left side, then what does she do?
“It’s been tough adapting and realizing it’s probably not going to get any better. No one ever plans for this type of thing and you wonder why it’s happening and how you’re going to deal with it.”
The quick deterioration of Denise’s condition has forced the family to move to Grand Bend, where Paul Pittao of Medway Homes is building them a wheelchair accessible house.
“We just want to enjoy a certain quality of life and enjoy the time we have together, especially now that we’re going to be empty nesters. That’s why we’re building this house, so we can get rid of some of the barriers.”
“In a lot of ways, (MS) has made our relationship stronger,” Scott notes, “but we certainly deal with a lot of frustration, especially with the financial burden. We’ll continue to work together and try to enjoy the years we have together.”
As told to Casey Lessard
My first symptom was 21 years ago, when Kendra was a year old. It was September of 1986. I remember it distinctly. I was sitting in the car and Kendra was in the car seat behind us. I turned to look at her and had a sharp pain in my eye. I had no idea what it was about, and it persisted for a week or so. Every time I moved my eye, it was sore in the back of the socket. The eye doctor diagnosed it as optic neuritis, and they sent me to a neurologist because that’s a symptom of MS.
It took about three years until I had my second symptom, which was called L’hermittes Sign. You get an electrical shock in your legs when you drop your head. The only people who get it are people with MS, so they diagnosed me then, and that was June 1989.
I had a pretty uneventful first 10 years. Benign symptoms: sensory kinds of things, tingling, numbness, but no motor symptoms. For about five more years, it was the odd episode of weakness in my right side, and then the last four years have been what they call secondary progressive, where you get ongoing, increasing disability.
When the disease became quite aggressive, I had allergic reactions to the recommended treatments that are available for relapsing MS. There was nothing left for me to try, so I went online looking for research studies and came across a woman in Burlington who was part of a study in Salt Lake City, Utah. She was having incredible results; she had chronic progressive MS, had been in a wheelchair for years and was walking. I phoned her and said, What are you on? She told me it was Zenopax. We hit it off as friends, and she took my medical files to Utah the next time she went. The doctor down there, Dr. John Rose, phoned me and recommended that I try his study. That was it; I went down and got on the drug that I’m currently on. That was in December, 2001.
There were 12 people in the study, and I was the 12th. I asked him why he took me on, and he said he looked at my file and couldn’t believe my bad luck. He thought I would do well on it and that I deserved a chance to get healthy.
I tried the drug and did well. It was extremely expensive. I was not covered under any drug plans down there and because it was an off-label study, I had to pay for it myself. The Exeter community and my family rallied very hard and raised a tremendous amount of money. It was $2,000 American a month, plus my flights, hotels and meals. I went to Utah every 28 days for two years. I stabilized and actually increased my disability scores, and everybody was really happy and excited. But the study ended in 2004 and I wanted to stay on the drug, so I paid for it myself as best I could.
It became a huge burden financially, so after six or seven months, I decided to try going off it to see if I could stay healthy. I went off it for seven months and went from walking with a cane to needing a walker.
Scott and I decided that I had to go back on it, no matter what. We tried to handle the finances and did so for another year and a half, two years. But the debt load was getting huge and Dr. Rose and I decided maybe we would try one drug that was still available that I hadn’t tried up here. He thought it was a long shot that I would do well on it, but because of the finances, we went for it. Went off the Zenopax and decided to try Copaxone. You need to be off Zenopax for a month and a half before you can try a new drug, but within two and a half months of being on Copaxone, I had a huge allergic reaction and then a big MS episode. I went from the walker to the wheelchair.
At that point, you go back on the Zenopax. You can’t do anything else. I had to. Now, I can’t go off it.
Dr. Rose has tried to see if Roche will pay for the drug, but because I’m Canadian, it doesn’t fall under their jurisdiction; he’s still working on that. I had approached the drug company earlier and they wouldn’t help. They showed some interest in giving me some compassionate help, and then they stopped. They wouldn’t call back and dropped any interest whatsoever.
I started asking for help from the government and applied for a Section 8 (Ontario’s special coverage of a non-listed drug product mechanism). They turned me down. I had an interview with Health Minister George Smitherman. The drug is in phase two of research, and after phase three they apply for approval, so we’re about three years away from approval. You can get the drug here, but it’s not approved for MS.
Someone from the government called me and told me to appeal my Section 8, and I had to collect all these letters from my doctors saying this was the only drug I could take. They said I would get my 2006 and 2007 money back.
We heard nothing, heard nothing, heard nothing. Finally, my doctor here, Dr. Milne, phoned me and said it wasn’t approved for exactly the same reason as the first time: that the pharmaceutical company had never applied to have this drug approved for MS.
Then I got quite angry and the letters started going back and forth. Finally, someone else from the ministry phoned me and told me they should never have recommended I appeal it; I will never get approval as long as Roche has not applied. This was in March.
Now, an insurance company in London has set up a fund to help with the costs. The health ministry won’t help me and the drug company says I do not qualify for their compassionate subsidy. They don’t feel accountable at all, even though people volunteer to test the drug, and they’re going to make a lot of money. That’s pretty immoral.
At 28, when you have one baby, a husband and a fabulous life and your future ahead of you, you don’t think anything lousy is going to happen.
Today, I have a pretty amazing life. I’m not complaining. We have three great kids and a pretty good lifestyle. I just didn’t think things would be this hard. I spent the last two years fighting for drugs to keep me healthy. I didn’t think I’d have to build a barrier free home and have no programs available to help me with some of those costs. I didn’t realize that when you get sick, there would be so little out there to help you with that.
We have an incredible group of friends – the ones that did stick by us – that have been there through thick and thin.
The hardest part of a disability isn’t the loss of the use of your limbs. That part has been probably the easiest. The hardest part is dealing with the change in people, and the change in the things you have to fight for to stay living normal and your kids well-adjusted. I don’t mind being in a wheelchair as much as I mind the way it affects my family.
A sense of loss
You grieve what you lost. It’s not that I think it’s my fault, but I think what it would be like for Scott if I didn’t have MS. His day should not have to revolve around me. Right now he does everything twice – once for me and once for him – and then worries about me all day long. I can’t even brush my own teeth right now. In the new house, the only thing Scott will have to do for me is put me in bed and get me out.
Before I had the allergic reaction to Copaxone, I was having difficulty walking up and down the stairs. Within three weeks, I was unable to do stairs at all. All of a sudden, my kids or my husband had to carry me to bed every night and downstairs in the morning. I can no longer get in or out of the house independently, go to the washroom independently, use the shower independently, and can’t use my kitchen or laundry room. I literally am carried down in the morning, put in this easy chair, and am carried up at night. That’s my entire independence lost within one month. That was a big adjustment.
I went from being an independent person who could drive, who did her own shopping and cooking, took care of her kids and worked, and all of a sudden, I was completely dependent.
My goal, when we move into our new house, is to not get in this chair in the morning. I’m going to stay in my power chair and do laundry and have coffee with a friend, get my own breakfast, and have my life back. What would really make it nice is if we didn’t have a huge financial fear every month with this $2,000 burden. If I have to go off this drug because we built this house, I don’t know if I’m going to be well enough to stay in the house. That’s the catch-22. Scott’s afraid to take the chance. We’re not sure what to do.