More Independence for Independence Day!


I finally had a lift installed on my car for my mobility scooter. This will give me more independence. Until now, I have been dependent on others to get my scooter in and out of my car. I always needed to have someone with me unless I was going somewhere on the bus or to a place that had valet parking. I wish I didn’t have to use a scooter or need a lift, but since I do, I might as well get as much independence out of the situation as possible.

For those of us fighting Pompe, loss of independence is one of the worst things about this condition. The stories of how “I used to be able to do this or that” are seemingly endless. And patients being forced to accept the fact that their body is being attacked and have to give in to the use of a mobility device can be a bitter pill to swallow. Most put off using a cane, walker, or wheelchair for as long as possible. We are a stubborn bunch and often refuse to accept that we need help – from other people or from mobility devices. Pompe patients often look “perfectly normal” so using even a cane brings on uncomfortable stares and whispers. It can be easy for friends and family members to want us to use devices for our own good, but it is a tough decision to make. It feels like failure, like we are letting the disease win. The thinking is, that as long as we can still walk without assistance we are winning the battle.

I finally had to concede the battle and move from a cane to a scooter after a several falls resulted in a few injuries. I suffered a pretty serious concussion, got mild whiplash twice, and twisted my knee twice. At the time of the falls I didn’t have a diagnosis yet and had no idea what course my mystery condition would take. So initially the scooter was more of a safety device than anything.

Today I make the most of it. I can do, see, and enjoy more with my scooter than I can on foot. Plus, I have found a real niche market for it. As most of you know, I live in Florida and love the theme parks – especially Walt Disney World. I’ve had a fair few visitors here over the last few months and have really mastered Disney’s Fast Pass system. I can race ahead from attraction to attraction to obtain Fast Passes for everyone in our party, saving time and their legs. I can also get out of a torrential downpour faster than anyone too!

My hope is that with diet, exercise, and infusions I will be able to transition from the scooter to a wheeled walker, and then from there a cane… and then? Who knows… maybe nothing at all. We have no idea what the future holds for Pompe patients, but I will keep fighting to win back as much of my independence as possible!

Giving in to the need for mobility devices may seem like losing the battle, but with Myozyme and Lumizyme in our arsenal we can win the war!

One comment

  1. Loved the post. You are an amazing women & deserve everything needed to make your life easier. You are not giving in to the disease, you are simply taking charge and getting your life back!
    One step at a time….we are here to fight the fight with you!!
    Love the Crowleys 🙂

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