Debbie

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. These symptoms resulted in difficulty with walking, coordination, and balance. At the emergency room, physicians ruled out Guillain-Barre syndrome, but also asked her about marriage troubles and stress, alluding to hysteria as if she was “making all this up.” 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. Many of Debbie’s current symptoms are invisible, except her gait disturbances for which she uses a cane. Debbie has trouble with coordination, balance, fatigue, urinary incontinence, and sometimes fecal incontinence. Debbie never fully regained complete sensation from her chest down and faces some cognitive issues such as forgetting words and short-term memory loss. 

Debbie’s experience with pharmaceutical treatments has been mixed. After about 8 years on Avonex, she stopped the medication because she was having more frequent relapses. Copaxone caused heart palpitations and bruising, she had an allergic reaction to Tecfidera that resulted in facial swelling and hives, and Tysabri caused depression and suicidal ideation. She is now in her second year of taking Mavenclad with the hope that it will stop disease progression. Debbie had to be her own advocate at times appealing medication requests to her insurance company in order to get approval. 

Debbie’s diagnosis took a toll on her and her marriage and was one of the primary factors involved with her divorce years later. It was difficult for her husband to stay in a relationship where he may be a caregiver, especially at a young age.” Debbie faced animosity and “snide comments” from her co-workers when it came to accommodations such as being able to telework. Debbie made the decision even with MS to try to have children even though in her early years with MS, it was not encouraged. Debbie’s children grew up only knowing Debbie as an “MSer and a parent.” She never ran with her children and was very limited when they were in softball, but her children rolled with the punches. For Debbie, the worst part is her incontinence issues because “it’s so demeaning and so humiliating” and ultimately very hard to deal with. Because of her constant worry that she will have an accident, Debbie has been going out less over the years which has diminished her social circle. Now, her focus is on family. Debbie worries about cognitive issues because while she had dealt with a lot of physical obstacles and overcome them to the best of her ability, she does not have control over her cognition.  

Debbie’s MS experience has made her learn to appreciate life more and to be more sensitive to other people’s special needs. She feels that she is very in tune with individuals that may have physical or developmental disabilities. As a Christian, Debbie feels that there’s something to be said for faith and hope in her MS experience. On a daily basis, Debbie works on realizing that MS is “a part” of her, not her “entire identity.” She tries to look at other areas of her life including spirituality, wellness, different things, and realizing that MS is just a part of her and not the totality.