We met with Lynn (the wheel chair rep) yesterday afternoon and we are getting closer and closer to making a decision on what exactly we are going to get. (If insurance agrees, which is becoming my big worry at the moment. But, there is nothing to do about it today, so we will cross that bridge when we get to it.)
I am hoping that I can convince Em to write a post ‘reviewing’ each of the options she tried yesterday but, until that happens, I will share a bit.
The rep, as planned, brought a manual chair with E motion wheels, a nice power chair and a scooter. Em didn’t want her to bring the scooter because it wasn’t even an option as far as she was concerned.
Guess what Em loved… Yup, she loved the scooter. So, yeah, bless Lynn for including it in our options because it just may be the answer.
The E motion wheels would be great if you had no upper body issues – but we all know EDSers have all over problems. So, Em definitely could propel herself easier, but still fatigued pretty quickly and the wheels were very touchy. It would definitely take time to get used to them. The wheel chair itself was pretty comfortable, but the back was too low to support her back and shoulders sufficiently. She ruled it out almost immediately.
The power chair, well, it was nice for what it is – which is a big, ol’ power chair. The most positive thing about it was the back would give her excellent support and it turns on a dime. It is big, though and wouldn’t be very practical in the house. She could probably use it, but I am not sure it would fit in her room and I know she would not be able to turn around in the hallway with it. She tried it in the wet grass and got totally stuck – so it isn’t exactly an all terrain vehicle. And it is really a lot of chair for someone who doesn’t need it all the time.
But. The scooter. She loved it and immediately saw that it could be the answer for her. There are some negatives and it will only be an option if we can make some adjustments. The biggest problem is the back – again, it is too low to properly support her back. Unfortunately, it is not an easy fix as no one apparently makes a higher back for the size of scooter she is looking at. So, it may be a matter of customizing a back for her. If that can’t be done, it is a deal breaker. The other issue is the controls require that her arms and fingers to be under constant strain. By adjusting the arm rests and angle of the controls, she can rest her arms. But it will be an issue.
Of course, with the power chair, she has a similar issue – less strain overall, but if her right shoulder/arm/elbow/wrist/fingers are injured, she would not be able to use the chair. But, we still have the manual chair – in that situation, she would simply need to be pushed. So, there is no perfect answer: we just have to find the best answer and we are fortunate to have options.
And, Em was pretty brilliant in the way she went about her decision. As I said, she was immediately drawn to the scooter, but after being sure that it was the right choice, she back tracked and reconsidered the power chair, suddenly trying to envision her worst day and what she would need. So, the power chair is still on the table, if the scooter cannot be tweaked to work for her.
In the discussion about what her worst day looks like, we talked about this upcoming week that will be rough. 3 doctor visits and likely another funeral (my grandfather is being taken off of life support this evening, after collapsing the evening of my grandmother’s funeral last week), plus Co-op. Lynn said, just take the scooter and try it out this week. If it works for this difficult week, it should do the trick most of the time. So, we have a scooter to try out until next Thursday and, so far, it is great. Em has scooted down to her grandparents house a couple times already and has said she could easily go by herself. (That is called independence, folks.) We will try it in the house and see how it does. We will go shopping and see how it does. She can try it at Co-op on Friday and at her doctor appointments, hopefully that will make her life a little easier this week.
It is pretty exciting and I think it will give her so much freedom and independence. She is thrilled and so am I. I mean, our ultimate goal is for her to not need it at all, but until that day comes, it will be awesome to see her in charge of her own mobility.
We will see what happens, but I think we are on the right track and it is a huge blessing to be able to trial the scooter and be able to make a very educated decision in the end. Now we start praying that insurance cooperates and lets Em actually have a scooter now that she has made up her mind!