Wasting NAH Money - I Didn't Mean to

[Johnny5]

I was sent in for an AFO. First, they gave me a cheap plastic one. Then a few months later, they had a custom one made out of carbon. After wearing that for 1.5 years, the Ortho rep told me I needed a KAFO (knee, ankle, foot, orthosis). That one costs megabucks, straps on to your leg all the way up to your hip, and weighs almost 10 pounds. I wore that for a few years, but now they are just too heavy. My legs are exhausted just putting them on, and just a walk across the yard makes me exhausted.

Now I just hobble about with my cane. Gotta pick them feet up high so as not to trip, otherwise, I plan on walking until I drop.

[EvelynMW]

Ellie Marvellous, wish the hand orthotic had done something!

[Ellie]

Can you do things with them on?

I sure can, Evelyn! They help stabilise my ankles and let me stand better for transfers. xx

[EvelynMW]

Ellie Do they do more than stop you from hurting yourself? Can you do things with them on? Just being nosey.

[Ellie]

EvelynMW Well, I am wearing two right now! xx

[EvelynMW]

Blimey Ellie you know everything. Thank you.

[Maria C]

EvelynMW AFO stands for ankle foot orthosis. They came as a pair. I affectionately referred to them as Frankies since I felt like Frankenstein’s monster bumbling around on them.
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[Ellie]

hmm, what does AFO stand for?

Ankle Foot Orthosis (or Orthotic), basically a brace or splint of sorts.

[Heather R]

EvelynMW I can really empathise with that sort of thing, I know my council and NHS needs every penny. I have got a lovely neck support moulded for me, and altered to open in the front to help me to put it on. I found I still did not have the strength in my hands to put it on. now I have carers I hope to use it. It's difficult for us to know exactly what would help, and how we will develop in our MND.

[EvelynMW]

hmm, what does AFO stand for? I hate b..... autocorrect, couldn't change the title to NHS for us Brits!

[Maria C]

EvelynMW I can certainly sympathize. Before I was actually diagnosed with ALS, I was referred to the orthotics clinic for help with dropfoot. I’m in Canada and we have an Assistive Device Program which covered 75% of the cost of my AFOs. I know how much my share was! I also had to get new shoes in a larger size to fit the AFOs. I barely used them at all. They sit in the corner of the entry making me feel guilty whenever I see them.

You shouldn’t feel guilty asking for help just because your symptoms are milder than someone else’s. That’s on the person at the orthotics centre who should have asked better questions and made more of an effort to suit your needs.

I am currently dealing with an OT who wants to solve current problems but can not see that those expensive solutions will be obsolete in another month.

[EvelynMW]

I was using a wrist strap to help me use my left hand. As it made my wrist straight, I couldn't do much with it on, too bulky.

I feel foolish now. I got myself referred to an Orthotics Centre. I explained what I can't use my left hand for, and we agreed to try a supportive glove. They are made to measure, and probably cost in the hundreds, but the lady refused to tell me how much.

it arrived after 6 weeks. Initially it was extremely hard to get on, the fingers of my left hand are not under my control. At first, my husband had to help me both put it on, and to take it off. It wasn't to be worn overnight. This did get a little easier and I learned how to take it off; and how to then turn it the right way out. I did need to use my teeth though, perhaps not the best way to look after it.

When on, the 3 fingers of my left hand, which normally hang down to the floor, didn't drop so far. Unfortunately, the lack of a firm wrist support, meant it didn't help me much at all. I am back to using my wrist support when eating. It allows me to use the fork in my left hand. With the glove, I could only used my right hand to cut food and put it in my mouth.

The one thing it did help, was washing up. With a rubber glove on top, I was less concerned about dropping things. Next, I will try without orthotic glove off, and rubber glove on. I'm really not sure which helped most!

As someone with mild symptoms, I feel quite guilty asking for this glove, when it gives me so little help.

The lesson I've learned? Ask more questions, explain better what I need. Perhaps, if I'd shown the specialist how I needed help, how much my wrist is used, perhaps they would have offered something else, or nothing, if the wrist support was as much as they could offer.

I am owning up to my error, will I still feel guilty? Probably.