Wanted: Team players
How many times have we heard how important it is to have a good team with us to treat our Multiple Sclerosis? Not only have I heard this over and over since my diagnosis, I have told others how important it is to have a solid team with us for this journey. But have you stopped and considered who you want on our bench?
Recently I attended a talk sponsored by the Multiple Sclerosis Association of America and the featured speaker was my neurologist, Aaron Boster. Dr. Boster again brought up the importance for those of us living with MS to assemble our own team. This was the perfect opportunity to ask who he thinks should be on that team and here is his lineup:
First and most importantly, we need to have support in our daily life. This could be a partner, family members or good friends. These need to be people who we have regular contact with and can count on being there with us through good times and bad, much like marriage vows but without the cake and flowers. We all know the part – ‘in sickness and health.”
Next up on the roster is a clinical team that knows Multiple Sclerosis and the nuances of its treatment. This group includes the neurologist and nurse practitioners. He stressed that the NPs bring more value to the team than the doctors because they usually have more contact with us and if they are MS certified nurses, they know most everything about MS treatments and have the time to answer our questions and do a complete evaluation of our needs.
We also need to have specialists to treat the assorted problems that might come with our MS, possibly including a urologist for bladder problems and an ophthalmologist for bouts of optic neuritis. A confident neurologist recognizes the limitations of their training and doesn't hesitate to suggest other specialists for our care team. I have all types of 'ologists' on my care team including the uro, gastro and cardio specialists, and each one plays a critical role in keeping me well.
Do you have a physical therapist on your team? My doctor believes there isn't a single person with MS who wouldn't benefit from physical therapy and he couldn't stress enough the value of someone objectively evaluating our physical well being and disease progression. Physical therapists can work through an evaluation of our deficiencies and develop a treatment plan that addresses our particular needs. The six weeks I spent doing PT at our local Neuro Rehab Center was well worth the time invested and fortunately my insurance covered the costs since I had met my deductible for the year.
A newer dimension to the MS care team is the inclusion of social workers in the doctors setting. Having someone who knows how to navigate the system, particularly those social services which can add to our daily quality of life, can make a huge difference. As patients we don't necessarily know what services are available to us and how to orchestrate their delivery. I'm fortunate that the MS Clinic at Ohio State now has a full-time social worker on staff to work through these special needs. If your neurology practice doesn't have a dedicated social worker, you can request referrals through the various MS organizations - they all have highly skilled people on their staff available to discuss plans and where to find special services.
Rounding out the team is a professional who can provide counseling. Dr. Boster is a strong advocate of talk therapy, and he isn't particular as to where we might find that care. It could be a psychologist or other licensed therapist but he recognizes the expenses to most of us to see a therapist. Considering the economics and out of pocket costs, he also includes in that grouping religious or spiritual leaders who are also trained in counseling. He acknowledges the value of peer support groups, whether they are in person or in online communities, but feels strongly we would all benefit from one-on-one counseling. Perhaps the counselor is the hardest member to add to our team, and I will admit I have resisted his suggestions that I see someone. At least I like to think I am handling my MS pretty well, but maybe that's even more of a sign that I should seek out this missing member.
The doctor wisely told the attendees that our neurologists, including himself, may be some of the best around when it comes to understanding and treating our MS, but having the knowledge of what we need in all areas of our life with Multiple Sclerosis and being able to provide it requires so many more people than one single doctor. It takes a team to handle a chronic disease and he recommends we have one in place before we get to the point we need to call them off the bench and into the game to help. My team roster is almost complete - how about yours?
Wishing you well,
Do you have a fear of needles and take medication that requires injection?