Debbie
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When Debbie was 26, she woke up with a “pins and needles feeling” in both of her feet, which progressed to her knees and eventually her chest. After a trip to the emergency room, Debbie was sent home worse than ever before and in a wheelchair, which she used for about 18 months. Over the course of two years of rehab and PT, Debbie was able to regain her ability to walk unaided. Debbie first received a diagnosis of relapsing remittent MS and felt that early on she would “bounce back” after relapses. However, she noticed that after several years she never really reached that 100% remission ever again. She was then diagnosed with secondary progressive MS.
Debbie has been involved in six different research studies, the first being an Avonex clinical trial to test the effectiveness of the medication. In addition, Debbie is involved with two longitudinal ongoing studies that observe her MRIs and Optical Coherence Tomography (OCT) results. She was also involved in a study of Tysabri which she ultimately dropped out from due to depression. Her fifth study was an MS study for insulin that aimed to test if insulin would help with cognition. Debbie believes she was given the low dose of insulin because she felt that she had a reaction when taking it. She is looking forward to hearing the results of that study. The latest research study she was involved in was an Electrical Functioning Training where the researchers put electrodes on her legs while she rode a stationary bicycle. An electrical monitor gave pulsation into her calves while she was bicycling to see if it would help her gait, strength, and legs. Unfortunately, this study was not successful because her leg was rubbing up against the chair they had while she was bicycling which led to bleeding. Ultimately, Debbie was pulled out of the study because they didn’t have a chair to accommodate her which was very upsetting for her since all she needed was a small accommodation of a chair with no arms.
Debbie felt really proud when she finished a study because she knew that she was a part of a study that will someday be published. She wishes that researchers would automatically share the results of their study with her. In her experience, she had to be the one who has to reach out and ask them to share their results. Debbie was very open to doing whatever she could to help, because having MS, she does not have any control over many of her symptoms. Clinical research is one area where she feels that she has some control and participate and know that she is doing something for the greater good.
Debbie encourages people to participate in clinical trials to help future generations.
Debbie encourages people to participate in clinical trials to help future generations.
It's on us. It's on us to do this. It's for our future children, grandchildren, and generations to come. I mean, how else are we ever going to find out how to reduce symptoms, what's working, what's not working, God forbid, find a cure? And if we don't participate, the chances are diminished. So, I would encourage everyone to participate.
Debbie says it is upsetting to be pulled out of a trial because of equipment limitations.
Debbie says it is upsetting to be pulled out of a trial because of equipment limitations.
It was EFT Electrical Functioning Training, I believe. It's where they put electrodes on your legs, and you bicycle. And that's the [NAME] version. That is not the scientific definition of the study. But they put this electrical monitor, if you will, that kind of gives pulsation into your calves and while you're bicycling, to see if that's going to help your gait and your strength and your legs.
Yeah, OK.
And that was not successful, because, quite frankly, I was too fat. My leg was rubbing up against the chair that they had while I was doing the bicycling. And at one session, I actually had some bleeding associated with that. And they pulled me out because they didn't have a chair to accommodate me, which was very upsetting to me. All I needed, really, was a chair with no arms, but they felt they didn't have a chair to accommodate me.
And so, did you just stop participating in that study?
They took me out of that.