Many of you who have read my blog over the years, know how I went blind in my right eye due to optic neuritis or my struggles before and after my anterior cervical fusion. During my rehabilitation from these events, I worked extensively with an occupational therapist (OT) to help regain the activities of daily living that were impacted by those events.
In the case of my optic neuritis, my depth perception was gone. Driving was not only difficult, but it was also dangerous for me to be out on the road. My doctor gave me a referral to an outpatient driving program where I worked with an OT on compensatory strategies behind the wheel.
Before and after my cervical fusion, I was having problems with my left hand due to a fractured vertebra that was causing the flattening of my spine or spinal stenosis. I am left handed and couldn’t hold a pen, pencil, fork or spoon. I also couldn’t hold a cup or put a key in a door. My wife and I were afraid of letting me hold my boys, who were 3 and 1 at the time, because of my propensity to drop things.
Then after my surgery, I couldn’t dress, bathe or clean myself up after going to the bathroom. This was a very difficult, emotional time in my life. It was frustrating that the things I took for granted like eating, dressing and going to the bathroom independently, I was no longer able to do. I was heartbroken that I couldn’t hold and love my baby boys and be the dad I wanted to be.
Luckily this time, I worked for a rehabilitation hospital. Dianne Johnson, OTR/L, took me under her wing. She retaught me how to eat, bathe and dress and adopt to life with a spinal cord injury. She also taught me and my wife safe strategies for letting me hold my babies safely for not only them, but for me too.
In addition, I saw Dianne at the MS Clinic and she did a series of standard tests on me to assess my disability. She used tests like the 9 Hole Peg test and Grip and Pinch to test my results against the norms. Occupational Therapy can be used not only to help correct problems as it was with my neck or vision, but also as a preventative measure in tracking disease progression using standard outcome tests.
A group of graduate Occupational Therapy students from California State University, Dominguez Hills reached out to me because they are conducting a survey of people living with MS. Because of my positive outcomes with occupational therapy, I wanted to interview one of the researchers about why this study was important to her.
Matt: Rachel, thank you for joining me on the blog today. Can you explain to my readers what Occupational Therapy is?
Rachel: Occupational therapy is medical profession focused on improving and/or maintaining and/or supporting one’s ability to perform tasks that they need and want to do, including self-care tasks (like bathing and feeding), leisure activities, work, school and more.
Occupational therapists are focused on addressing our client’s goals and priorities and putting these first when forming treatments. As clinicians, we look at the whole person, rather than just their disease, and always find our client’s strengths are more important than their weaknesses. Occupational therapy’s main focus can be described as improving quality of life.
Matt: What got you interested in becoming and Occupational Therapist and researching the quality of life of people living with MS?
Rachel: My mother has had progressive MS for 32 years and she was diagnosed before I was born. Growing up as an only child, I have always wanted to help her in the most meaningful way, which seemed impossible at times especially as her disease progressed and she moved into a board and care. I developed such a passion for improving the lives of individuals with MS, which led me to pursue a graduate degree in occupational therapy. When it came time to choose a research path, I knew immediately that I wanted to work with individuals with MS.
I always felt that those with progressive forms, like my mom, held a much smaller focus within the research community and I so badly wanted to highlight this gap in the research. The only way I could really jumpstart this research, was to tell the stories of individuals with progressive MS and show the medical community how different of an experience it is. After interviewing many individuals with progressive MS, it was so apparent that each person with MS is vastly unique and should not be treated with a blanket form of therapy.
Matt: Can you share any personal stories about your mother’s care that lead you to become an occupational therapist?
Rachel: As a daughter, I always want my mother’s priorities to be considered first and foremost. I felt there was a disconnect between my mother’s personal goals and her provider’s treatment goals, based on their limited knowledge about what mattered most to her.
For example, providers would give my mom different hand/wrist splints and adaptive hand tools that she never ended up using (because their goals of having her feed herself independently were not what was most important to her) or focused on energy conservation techniques due to the common MS symptom of fatigue.
At the time, her goals were to continue to be able to go out into her community and maintain social relationships. In addition, my mom doesn’t experience significant fatigue anymore due to her limited mobility and, because of this, I believe her treatment shouldn’t be focused on fatigue management, but instead on addressing what currently affects her most, boredom and lack of social interaction.
Matt: Rachel, unfortunately I can relate. Many times I felt I was prescribing or given devices I didn’t need or that didn’t work. I felt like an OT evaluation allowed me to choose meaningful adaptive devices that were useful for the activities of everyday. Thank you for being there for your mother and I am sure that passion will translate over into your practice and helping others living with this devastating disease.
What is this MS research project?
Rachel: This study aims to identify what impacts quality of life most for individuals with MS, which provides the medical community with tangible evidence to then form more client-centered treatment.
A colleague and I recently completed a qualitative research study where we interviewed individuals with progressive MS to gain more insight into their experience of having MS. We found, from analyzing those interviews that patient’s goals may not always align with the goals of medical providers. For example, we found that social and family engagement was much more meaningful than being able to independently dress oneself or perform other activities completely independently.
Matt: I think it is great that you are looking into progressive forms of MS. What is the goal of the study?
Rachel: Treating each individual holistically will not only improve the quality of care, but also the quality of life for everyone impacted by MS. We believe that it is important for medical providers to approach their clients with the following questions: ‘What activities in your life are most meaningful to you?’ and/or ‘What do you want to do?”
It should not matter what activities the medical provider thinks should be important, but rather what you do and what will make your life more meaningful.
Overall, our goal is to improve the relationship and communication between medical provider and client with MS, so that quality of life and personal goals are considered first and foremost.
Thank you Rachel for sharing your story and for the difference you are making in the MS community and for your mother!
I took part in Rachel’s study. It is an anonymous study, so you do not need to give your name or email address. Just click on the link to fill out the form. Your participation will help Rachel, and her team, make a difference in MS. The entire team thanks you for your support!
Click on this link to complete the survey: http://goo.gl/forms/DC2EgQoS7t
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