Having the talk about what to do in case of an emergency
Being prepared means devising a plan ahead of time should an emergency happen
For the past two weeks, the elevator at my daughter’s school has been out of order. This complicates things greatly for Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) when she was 15 years old.
Looking back, I am so grateful we made the decision to home-school our two youngest children when they entered middle school. Little did we know that a few years later, Grace would begin showing symptoms of what we now know as LEMS.
If we had not been home-schooling when Grace got sick, her education would have been seriously interrupted. Because of her fatigue and walking issues, she never could have maneuvered through a high school setting on a daily basis.
Out of service
The home-schooling program we enrolled them in hosts two locations in our area. However, only one location has an elevator.
Grace is seriously hindered in her ability to go up and down stairs. It’s not impossible for her, but it brings with it a lot of anxiety, the risk of falling, and the need for significant effort. It is impractical.
Throughout the years, the elevator would occasionally need repair or break down. I would always hear from our director ahead of time so that we could come up with a plan.
Now, however, the elevator most likely will be down for the rest of the school year due to difficulty in acquiring a specific part.
The school has accommodated us so well. Friends help carry Grace’s bags up the stairs. The staff provided a room upstairs so that she can stay upstairs the entire day instead of going up and down for study hall and lunch. Study hall monitors provide assistance to Grace at the end of the day when she goes down the steps.
Although they have accommodated Grace well, this inconvenience has forced us to have some much needed conversations — first with Grace, then with the school. What would happen in the event of a real emergency? Who would Grace ask for help? In the event of a fire, would the exit be orderly enough for her to slowly descend the stairs?
It is imperative that we have these discussions with our loved ones. Their lives depend on them.
I think it is natural for us all to believe the worst will never happen to us. But I think those of us living with a rare disease know all too well that the unexpected happens more than we care to admit.
We are never too prepared for an emergency.
Come up with a plan of action. Share this plan with those who could help implement that plan. Write it down. That way, we all know what to do in case of an emergency.
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 myasthenic syndrome.
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