MS and Knee Contractures

Mobility is archetypal yet with Multiple Sclerosis as ambulatory symptoms progress, falling becomes the dominant danger while contractures are the stealth enemy lurking inside the solution.

Lacking a National Health Service, here in the US physical therapy services depend on individual medical insurance plans and/ or the resources of families. Right or wrong is not my point. The problem becomes lack of consistency.

Fighting daily into a future of anxiety, does not always make for an easy patient. PT is not fun. Always remember you are not the one sitting in the wheelchair. That loss of ambulation can be a symbolically powerful moment in the progress of disability from MS.

One of Patti’s first neuros tried the motivation cliché, “Patti - suppose science finds a cure for MS, but your legs have atrophied.”

Some years we had a medical insurance plan where therapists would come to our home after an exacerbation or hospitalization for MS to design and work with Patti with her new abilities in the actual world she lived in.

Other years we had a plan that required me or someone to get her to  a therapist’s office. Transportation to services always bumps up the challenge.

In the home care era of living with MS as a family, her increasing MS cognitive symptoms became part of the problem. We modified our home with grab bars, exercise bars and pull up bars for both therapy sessions and to support her exercise program as designed by therapist.

Yet once MS cognitive progression began to impair her memory to set her brakes, unattended exercise became dangerous opening the door to knee contractures.

Changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.

Those families with money, space, and technology may be able to add ceiling lifts or portable Hoyer Lifts for transferring the person with MS from whatever - bed to chair, commode, shower chair. This was not an option for us and I confess to having a guy thing about it. I have always transferred my wife using the one person unassisted transfer, sometimes called the hug transfer, and yes it takes both strength and a toll on your back.

Once in the care facility era, PT not only accelerated but was personalized. Patti will never like PT, and I found myself needing to help at least in the beginning. Professionals have to comply with “no means no” however family has different rules of ‘support’ and we worked and worked. Transition and transfer in the care facility era is her ticket to outings.

Obviously they would prefer to use their abundant and frankly safer lifts to transfer Patti like cargo from chair to bed and vice versa. Bottom line when I begin the one person unassisted transfer and Patti’s legs tuck up under her instead of extending to the floor I am dead lifting her and risking both of us falling.

A saint of a new therapist looking at some therapy I had found out of Scotland changed the modalities of therapy. Beginning with ultrasound to deep heat muscles and tendons legs were manually stretched and manipulated, a soft knee orthosis was applied and then nap time.

Like many with MS, a cat nap to address MS fatigue is not only a definite lure but big time help. IMHO the results have been phenomenal.

Not addressing contractures early can only lead to pain, more draconian therapy or surgery. A plus to the care facility era is that medical care surrounds Patti from aides for attended activities of daily living to nursing staff to doctors visiting you, to ‘down the hall’ therapy.

As a caregiver family or friends - you must continue your MS education; stay involved and supportive of treatments. In a sense you are the incentives for effort.

Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.

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