“Frail and critically ill patients need work-out, not just rest,” according to Michelle Kho in her recent Brunswick News commentary. She and I are of the same mind with regard to ‘use it or lose it’.
Sometimes, but not often, people with a limited/narrow understanding of cerebral palsy believe we who live with it, ‘suffer’ from it or are ill/sick all the time. Thankfully, the majority of us who were born with this ‘fixed’ neurological condition do quite well, having the same life expectancy as our non-disabled peers. Certainly, we have to accomodate our uniqueness and accept that not all environments are going to meet our needs. The joy of being us!
I ‘use it’ many times a day, so I don’t lose it. Whether it’s stair climbing, bending over several times a day to tie out one dog or both, getting down on my knees to get something out of a lower cupboard, I need to move. Even executing the steps associated with preparing my evening meal provide me with a good orthopaedic and cardio-pulmonary workout.
I need to move so that I won’t find myself fallen down due to weakened muscles, or taken down by a lung infection, a cramped leg muscle, a low back pain. Proactivity is key in my world as it’s a matter of survival. In many respects, I may well be fitter than most women my age in spite of an array of medical/health concerns. Why? Because I started early, first at the hands of parents and others, then from my late teens to date, on my own - the activities of daily living, sometimes modified to mesh with my orthopaedic limitations, have given me a quality of life I may not be enjoying had I not made the decision to just get up and go. And keep going!
As to the hospitalised/medical patient, Ms. Kho’s article speaks to the benefit of in-bed cycling — assisted by the supine bicycle, to prepare the entire body for life after a lying down hospital stay. It doesn’t take long for limbs to deterioriate if not used, whether passively or actively.
Even ICU patients will benefit from passive twice daily exercise - to keep the muscles toned — it’s common sense, really. The post-surgery plan should include daily exercise, whether ordered by a physician and executed by a nurse or qualified physiotherapist or by a family member who appreciates the need to keep Uncle Joe’s arms and legs moving. Gentle massage significantly contributes to recovery while percussion therapy is another mechanism that contributes to health and wellness; again, therapists could hold show and tell sessions for family members who want to do more during hospital visits with a loved one. The comatose patient or one who is in a medically induced state of unconsciousness still benefits from passive limb manipulation. There has been much written about the therapeutic value of touch.
Very often, the elderly patient hospitalised for several days to recover from hip replacement surgery may develop pneumonia, so exercises like cycling the legs or reps of gently bringing the patient from lying to sitting while still in bed do help as they strength breathing function and potentially minimise the rapidity with which some may contract hospital stay pneumonia.
People in my situation, as we age with conditions like cerebral palsy are mindful of the need to do as much as we can do to minimise the impact of flu, colds, or any other state of unwellness that compromises our independence. I’m sure I speak for many who live a life similar to my own, moving through the day, with awkward gait and balance, having to measure every moment based on how our body feels and what we inherently know it can do. Sometimes, though, we forget that we’re not 10 years old. I know I do and I sometimes over-extend myself. Make no mistake! I pay for it!
What our government bodies tasked with providing services for seniors must consider are the needs of those aging with since birth and adult onset disabilities that affect quality of life. As example, persons with spastic quadriplegic cerebral palsy, vent dependent or not, would benefit from daily physiotherapy. Home services should be provided — even once a week, physiotherapy at the hands of a professional has many benefits; as well, that therapist can instruct the caregiver on key exercises that can done between visits — each and every day!
If, with the passage of time, those with profound disabling conditions are transitioned to nursing home care, is that environment ready for them? Thanks to various mechanisms of inclusion, the intellectually challenged, for example, were ensured a quality of life that allowed them to be ‘in’ the community. Should that come to an end, what, in the clinical setting will replace it to ensure a level of emotional and physical wellness continues as their bodies age. Much to consider.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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