Battling MS is a colossal fight that you should not be undertaking alone. Between Neurologists, PM&Rs, PT’s, family and friends your team is there to support you through thick and thin. Since being diagnosed in 2010 I have spent the past few years assembling my team or “Donntourage” (my name is Donn) as they are referred to by my Neuro PT Mary at the University of Michigan Rehabilitation Center. With web resources like Health Care Journey and social networking sites available these days forming your team has been made a less daunting task.
Communicate with other MSers as they will be your strongest allies in assisting you in team building and when you’re in a time of need. If you don’t know any other MSers get onto the National Multiple Sclerosis Society website and go to the next function. The NMSS puts on many events throughout the year from Muckfest and bike rides to walks all of these events draw thousands of people that either suffer from MS or support someone with MS. You can find the NMSS link under the “News and Events” header on Health Care Journeys home page. Some of my best advice comes from networking with other MSers. Talking about what meds you have tried, doctors, diets and exercises that work for you…or don’t is a great way to sift through all of the info out there!
Talk with your neuro, with all of the info you have available to you, you should be able to have an educated discussion about what is happening with your MS. If something is not working for you SPEAK UP! Your neuro will not change anything if you don’t express your concerns. You are the captain of your team, your neuro should be the star player but if you are not open and honest they will only be able to help you so much.
Find a Physical Medicine & Rehabilitation (PM&R) Dr. to be on your squad, luckily for me there is a superstar at my MS clinic (University of Michigan) Dr.Chadd. PM&R is the Doctor that looks at your body function as a whole and how MS is treating you, how is your digestive system working things like that. They also will make recommendations for assistive technology like scooters and ice vests things that can make your life easier. This will also be the doctor that will help you find a physical therapist. Again, be sure to speak up and give them all of your information even if it seems embarrassing they are on your team for a reason…to help you.
My team has many players but none as important as my Neuro Rehab PT’s. Before my PM&R sent me to them I was with physical therapists that treated me like I was trying to recover from a sprained ankle “15 more leg lifts and then switch sides” was the extent of the input I received from them. Now I am standing on foam pads catching balls while looking side to side or getting tortured on the Red Chord apparatus. “Communication is a very important part of what we do; if my patient doesn’t communicate their goals to me I have to work much harder to devise a treatment that fits them. I need to communicate with my patients Doctors and if we’re not all on the same page things can get complicated” says my Neuro Rehab Therapist Mary.
This team took me years to assemble and I am very lucky to have each member but I would not have them if I didn’t communicate my needs to my Dr. in the first place. It has not been easy or fun but my team is stacked with ringers and they are all making my journey easier in their own ways.
How is communicating with your doctor about MS, has it been satisfactory in your eyes? Who is the strongest member on your team, did I miss a player on my team that you might have?
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