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Deconditioning and MS

By Cherie Binns
Deconditioning. I used to get so angry when healthcare professionals used that word to describe me or the cause of symptoms for which I was asking for help. Many years ago, before my multiple sclerosis diagnosis, I was having a difficult time doing the simplest things: such as walking up a flight of stairs, or carrying a load of laundry a few feet from the laundry to the bedroom, or doing the grocery shopping. I would have trouble breathing normally and evenly and felt like I could not get my lungs full of air. My heart raced and I had palpitations. My legs weakened and my left foot would trip me up.

A few years later I received my diagnosis of MS and discovered in the consultant report back to my doctor, that word was again used. “Patient is alert, cooperative, and pleasant…. physical exam shows signs of deconditioning…” Despite the fact that I now knew why I was so tired all the time and had more difficulty doing simple things, seeing that word “deconditioning” made me angry. Didn’t they know how much I was doing? Didn’t they see how active I stayed despite not feeling well? 

When walking was becoming less safe and falls more frequent, my doctor referred me to a physical therapist. The script read: “Evaluate and treat gait disturbances. Develop core strengthening home exercise program. Diagnosis: Deconditioning secondary to multiple sclerosis.” I seethed seeing those words on paper! I felt somehow minimized by hearing once again that the people I was trusting to care for me did not trust or believe me when I said I was active and exercising. It felt like they were judging me. I say “felt like.” They were not actually saying or even thinking that. Deconditioning is something almost all of us with a chronic illness will experience at some point in time. A couple of days in bed nursing the flu or an injury can literally set us back a week or more in recovery time to come back to previous levels of functioning.

The dictionary defines deconditioning as: “A loss of physical fitness due to failure to maintain an optimal level of physical training. Inactivity for any reason may lead to deconditioning. For example, astronauts exposed to weightlessness for prolonged periods of time become deconditioned.” 

Well, if a highly trained athletic professional like an astronaut can become deconditioned, perhaps it was not that bad and certainly had a fix available. My personal problem with this was that when a physical therapist saw “deconditioning” as a diagnosis, they often went to work as a personal trainer, seemingly oblivious of the heat and activity-related fatigue that occurred in the therapy session that ramped MS symptoms back up.

I saw a number of physical therapists over the years and each one approached my care and treatment in a common manner. They sat with me for an average of 45 minutes each session and watched me do repetitions of various exercises they had instructed me to do. I don’t know about you, but when I am used to getting exercise in small doses throughout the day, and when I have MS-related fatigue, and when I have a left leg that stops working with repetition, this is not a good scenario. One day, after one such session, I was driving the 22 miles home from the therapist’s office and forgot where I was and why I was there. I narrowly missed colliding with an oncoming vehicle. I had to pull off the side of the road, crank up the A/C, drink some water and rest for a few minutes while my body cooled before I could be physically and mentally alert enough to safely continue the trip home. From that point on, I would ask a therapist to show me what they wanted, write it down, I would do a return demonstration showing that I knew how to do the move they were requesting, then I would go home and do the routine at my own pace, often breaking it into several segments of time throughout the day. 

If you think you might be experiencing deconditioning consult your doctor for a referral to a physical therapist for some exercises that might help to regain strength and stamina. Ask also for a referral to an occupational therapist for energy saving tips tailored to what you do each day in your personal life so that you have the time and energy to rebuild strength.