At some point, as a person with multiple sclerosis, you are given a survey. I came across it a few months into my diagnosis. It was given to me by my physical therapist. It is meant to access your perception of your quality of life, including factors such as health, happiness, and level of comfort. People with MS report a lower quality of life than people without the disease and also among people with other chronic health conditions. I sat beside my PT as she tallied my score. It was alarmingly low. I asked if I was being overdramatic in my answers. She said I had been honest and the score was accurate. She was kind and compassionate in her explanation. I was grateful for that.

My Quality of Life Survey Score was so low due to the dramatic change in lifestyle I had experienced. Only months before I had been an athlete. I was an endurance hiker and cyclist. I loved long walks and running. My quality of life had been amazing. Now I struggled to do the things I loved. I even struggled to make a living. She told me my score was a lot lower than she typically sees from patients, but it was justifiable. I had lived an active and fulfilling life. I was happy and energetic. I was daring and always looking for the next adventure. All of that changed seemingly overnight. One weekend I was hiking on Saturday and mountain biking on Sunday, the next weekend I was struggling to walk. Not being able to do the things I longed to do put me in a black, bottomless pit of despair. I still wanted to live my life. I still wanted to continue to be me. I liked the person I was before MS. I admired her very much, actually. I missed her, and I still do.

Surveys and scales are pertinent tools when assessing chronic health conditions, like MS. They contribute important information to clinical trials and are a good assessment of therapeutic efficacy. There are countless surveys available. Many can be done on your own time without needing a provider to administer the questions. Scales exist to measure bladder and bowel control. There are other scales to measure visual impairment, sexual satisfaction, and fatigue. You can find a comprehensive list of clinical study measures on The National MS Society’s site.

The survey I was given was the Multiple Sclerosis Quality of Life (MSQOL-54) Instrument. This survey covers generic health information and then goes on to include MS-specific questions, such as those about fatigue and cognitive function. There are fifty-four items on the instrument which includes twelve subscales. These subscales cover physical function, physical limitations, emotional limitations, pain, emotional well-being, energy, health perceptions, health distress, overall quality of life, social function, cognitive function, and sexual function. The survey is scored in two areas, physical health, and mental health. The MSQOL-54 is easy to administer and only takes about fifteen minutes to complete.

The MSQOL-54 can be found in (Vickrey et al, 1995). Download the MSQOL-54 administration forms and scoring instructions (.pdf). For permission to use the MSQOL-54, please contact Dr. Barbara Vickrey at barbara.vickrey@mssm.edu.

https://www.nationalmssociety.org/For-Professionals/Researchers/Resources-for-MS-Researchers/Research-Tools/Clinical-Study-Measures/Multiple-Sclerosis-Quality-of-Life-54-(MSQOL-54)

It was only a matter of months after my diagnosis when I completed the survey. I was still reeling from all the changes my body and mind were going through. I was still trying to figure out how to cope physically and mentally. I cannot recall my specific scores on the survey, other than they were low. It was eye-opening. It was my first wake-up call that I needed to start taking action to get my life back. I am slowly coming to terms with the fact that I will never get my old life back. That girl is gone. At least the physical manifestation of her is gone. The girl who loved to ride bikes and climb mountains is still very much there. It makes it harder to not be able to do the things you love when the longing to do them is still very much alive. MS is a never-ending rainstorm when all I want to do is go for a bike ride.

It appears physical therapy will forever be a part of my life. At least, as long as I want to keep moving and functioning as normally as possible it will be. I start therapy again in about two weeks. This go-round will be for my arm and hand. I imagine I will be given the survey again as a comparison to where I was before. It was only two years ago when I first filled it out, but it feels like eons. I imagine the purpose would be to see where I am now physically and mentally compared to where I was then. I imagine the hope would be that I at least have not worsened. Sadly, I doubt I would score any better now than I did then. After months of seeing a psychiatrist and attempting to reign in my mental health, I do not know that I fare any better overall now than I did then. I will say there has been a certain level of acceptance and I do not cry as much. I do not think those are things that I came to terms with because I worked through them. I came to terms with them because I had to if I wanted to continue to live.

As for my physical quality of life, I can speak with confidence that there have been no improvements. It has not been for lack of trying, though. I am not sure what to attribute that to. I do not think it is stubbornness. I think it is just a sheer will to still do the things I want to do. I have not found that magic strengthening exercise that will give me my legs back, but I keep looking for it. I have not found a supplement that rebuilds my myelin, but I am still experimenting. I have not found the tool to strengthen my grip, but it may be out there. If I do not keep trying, I will never find it.