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If There is a Will…

Living with ALS on a boat

Boating has been part of our lives for most of the 50+ years of our marriage. It has been our escape from the pressures of everyday living – soothing work-induced stress, calming challenging situations and generally providing a brief escape from the pressures of life. This rotten disease slowly took that pleasure away from us because it was impossible to get my wife, Donna, from her wheelchair into the boat.  Our boat is located at the end of our dock on a small lake in northwestern New Jersey.

Engineers are a strange breed. They cannot let a problem go unresolved. How do you lift a person out of a wheelchair and gently place them in a boat at the end of a dock – then reverse the process without any drama? This is when two engineers are more dangerous than one. Over lunch one day with a friend, a solution was proposed using an old section of his scaffold, an aluminum I-beam, and an I-beam trolley. A drawing was developed to make sure the dimensions were going to work.

Would the structure be high enough to drop a person through the opening in the surrey top while allowing the boat to pass under the overhanging I-beam? Would our existing harness and portable electric lift get her out of the wheelchair and over her seat in the boat? Would the whole structure topple over if someone was hanging from the end of it over the water?

This last question was the most challenging because we could not permanently attach the structure to the dock. Turns out, the solution was as simple as using the 450-pound wheelchair as a counterbalance by strapping its tie-down rings to the top of the scaffold. Works like a charm!

We quickly got to work collecting parts and buying what we did not have – at a total cost of around $300. The old section of the scaffold was repainted and assembled on the dock. The I-beam with its trolley was bolted to the top of the scaffold. Wooden feet were made to facilitate the repositioning of the structure as needed. Tie-down straps were installed so they could quickly and easily be attached to the wheelchair once it was in position.

We must admit, the first trial run was a little intimidating. Do you blindly trust that this contraption is going to work according to plan? Turns out, it works perfectly – a simple and safe way of getting from the wheelchair to her favorite seat in the boat – right next to me where she has always been.

Now, a small piece of normalcy has returned to our lives. We frequently go for a boat ride together in the late afternoon to enjoy the peace and quiet offered by cruising the lake in our electric-powered boat. When friends visit, a boat ride is always on the agenda. Those friends even supplied a delicious ice cream cake to celebrate our recent birthdays.

Just remember, if there is a will… there is a way! – Don

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