Tracking Our Daughter’s Progress, Thanks to the Benefits of Physical Therapy
Her efforts have helped improve her balance, mobility, and quality of life
We have all been thrown into the world of rare disease with varying circumstances. We walk different paths in regards to treatment and medication. However, because of the nature of Lambert-Eaton myasthenic syndrome (LEMS), most who have it have spent some time in physical therapy.
Even before our daughter was diagnosed with LEMS, Grace’s doctor referred her to a physical therapist. While we waited for a diagnosis, Grace lost weight at a rapid pace. Muscle atrophy was swift. Gagging on her food kept her from eating as much as she desired.
When we first met with the physical therapist, we had yet to receive a diagnosis. The therapist’s goal was to halt the muscle atrophy that was occurring, but without other medical intervention, this was nearly impossible.
Finally, with diagnosis in hand, the therapist could tailor a program appropriate for someone with LEMS. Through motion analysis, her physical therapist was able to pinpoint where Grace’s weakness was and target that area.
We have found that the benefits of physical therapy for Grace include the following:
It improves mobility
Grace was having trouble standing, walking, and getting up from a sitting position. The physical therapist came up with an individual care plan to address Grace’s most pressing needs.
Stretching and strengthening exercises helped restore her ability to do simple movements. Improving core strength gave Grace the ability to do things like sit up from a position of lying down.
It improves balance and prevents falls
In the early days, Grace fell numerous times. Not only was her balance off, but also her legs would simply give out from under her. The therapist was able to provide exercises that safely challenged Grace’s balance. He also provided exercises that improved her coordination.
It sets attainable goals
The physical therapist joined with Grace to set goals that were within her ability. At first, he set goals like climbing and descending five steps and walking on the treadmill for five minutes. The goals pushed Grace beyond what she thought she could do.
He also encouraged her tremendously. Every four weeks, he would perform an assessment of Grace, and more times than not, she met or surpassed her goals. Actually seeing improvement provided her with great encouragement.
It improves quality of life
It goes without saying that among the benefits of physical therapy is the potential to significantly improve one’s quality of life. Before physical therapy, Grace was unable to get out of bed in the morning without help. Physical therapy not only provided her with tips and tricks to get out of bed in the morning, but also increased her strength enough so that she didn’t necessarily need those tricks.
One of Grace’s passions has always been horses. We found a horse therapy program nearby. The physical therapist was able to work in conjunction with the horse therapist to help Grace with movements, such as lifting her leg up and over the horse. This restored a passion in Grace she never thought she would experience again.
It has been over three years since Grace started physical therapy. Although she could probably do much of it on her own at home, we have found the accountability and goal-tracking to be highly beneficial.
One day I am sure she will have to give up physical therapy. By then, my hope is that she will have learned enough exercises and tricks of the trade to continue to increase her strength and stamina on her own.
Until that time, we are thankful for the hours the physical therapist continues to pour into Grace.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.
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