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Wanted: Team players

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,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ellj
    6 years ago

    Thanks Laura.
    I will add this to our support group info.
    MS SUPPORT GROUP HIGH PARK TORONTO

  • Laura Kolaczkowski author
    6 years ago

    thanks for letting me know it is useful. There is so much we can learn from each other. be well, Laura

  • Penny
    6 years ago

    Laura,
    Dr.Boster is my physician as well. I cannot tell you what a difference it makes to have such a great team to work with!I have never seen a group of people work so cohesively and truly “know” their patients as well as these people do. I live about 45 minutes away, but was refered by my local neurologist due to my age of onset. It was the best thing that could have happened! He takes his time, explains all the options and truly includes you in your care. His NP’s are equally as wonderful and reply quickly to my every need. I have always been directed to the right person, the right services and feel like I am treated as a whole person~not just someone with MS.

  • Laura Kolaczkowski author
    6 years ago

    Penny, it’s always good to hear my opinion reiterated by others. I find the trip to Gahanna to be the best thing I can do for my MS care.

  • eva
    6 years ago

    Anybody want to join a RECOVERY team … I found research on healing of myelin and recovery with movement after diagnosis in 1967 and have used it to recover from all the damage. Now 69 and fully mobile … want to know more …Eva Marsh

  • amazing gg
    6 years ago

    team players are a must with a lifelong illness such as ms.
    i personally feel it takes a village to survive after 16 yrs.i have the team leader (neuro), assistants such as nurses,talk therapist,physical therapist,aqua therapy instructors,massage/yoga/tai chi therapist,social workers and life coaches and just good friends who take turns sharing my special life daily.
    it is sad when we see people who ignore us because they are healthy. we all get there sooner or later with many of life’s conditions. ms has chosen the people who walk with me side by side and although there are many who come and go the true gones always remain constant. it is not an easy journey but one worth traveling

  • LAC1120
    6 years ago

    Laura, Dr. Boster is the best! When he was at The University of Michigan, he was my doctor. I miss him! I have a wonderful neurologist since we moved to Tampa. But it took some trial and error to find him. Dr Mark Cascione is great! MS sucks, but having a great team and a great attitude really helps.

  • Laura Kolaczkowski author
    6 years ago

    I love hearing that my opinion of Dr. Boster is spot on – it seems I have only heard good things about him. It’s great to hear that you have found another great neuro – they seem to be a challenge to find.

  • DirkR
    6 years ago

    Dear Laura,
    I agree that the treatment and rehabilitation of MS should be coordinated by more than one doctor. During my rehabilitation in Poland I was under the care of a neurologist, a cardiologist and an urologist. It was a great experiance compared to what I had to deal with in other clinics. You can check out the clinic I was in here:
    http://www.youtube.com/watch?v=i2hyMn4Brm4

  • Laura Kolaczkowski author
    6 years ago

    It’s good to know that even some of the CCSVI clinics are taking the team approach.

  • Sonya
    6 years ago

    Laura,
    I’ve been out of town, & am just now playing catch-up on Facebook. I so enjoyed your article. As always you give me much to think about & consider on this journey.
    I hope this finds you well.
    Sonya

  • Laura Kolaczkowski author
    6 years ago

    I’ve been gone most of the month, myself, and also playing catch-up. Thanks for reading and giving me your feedback.

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