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StandingTall

Introducing Myself - Lady Amputee Also Has Cerebral Palsy

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Hi, my nickname on here is StandingTall. I am a 56 yr old female with lower body Cerebral Palsy from birth. Since 8 May this year, I have also become an AKA on my left leg due to circulation problems. At present I am a wheelchair user, but would love to be given the chance to use a prothesis or at least to try one out. My Physiotherapist thinks I could be the only person or one of a very few in Scotland to have both conditions at the same time. Any suggestions or comments would be most welcome. Thanks.

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Hi Standing Tall,

I don't have any experience with CP, but I do have experience of doctors and Prosthetic folk selling me short about what I could do. My advice is to push the system very hard. Don't let go of what you can do/pretty sure you could do. Never give up,however learning to use a prosthesis does take time so be patient with yourself and keep going.

Peace and good luck,

Beth Marie

Kamloops, BC lCanada

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thanks for your encouragement. yes, I feel I have the right to at least try and mobilise with a prothesis. However, I do appreciate that having CP will complicate things, if I am going down, I want to go down fighting. Our national health service here in Scotland is free but if you don't meet the list of criteria, you won't be considered for a prothesis. To go private is too costly for us, we can't afford it, unless I was to set up a trust fund and start fundraising. But I am very lucky in a sense as after the op, my pain was down by at least 85%, my meds were reduced by two thirds and I rarely am bothered with phantom pains. I have a strong faith basis, which helped me and my husband thru the worst. Basically we were told in the spring of last year that if I didn't have the op sooner rather than later, the ongoing infection could get into my body and prove fatal. 6 weeks later I had the op. It ended up with me being an AKA left leg but the would healed perfectly and no signs of any further infection. Sorry for going on like this but it's the first website I've found where others understand what I'm going thru.

Take care and God bless,

Lillian Ann

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Hi, StandingTall, and welcome! I'm a below-knee amp myself, and I have no first-hand experience with CP, so I'm doing a bit of speculating here...but DO push as hard as possible for a prosthesis. I do have a good friend who has dealt with CP all her life, and looking at her concerns and condition, the one thing I'm fairly sure of is that she would want to be able to have the option of a second leg to use when transferring from place to place. My friend's condition has deteriorated to the point that she's close to fully wheelchair bound at this point, but she still uses every possible assistive device to allow her to live independently. My own opinion: if a person with a disability can continue to be self-sufficient by using some type of assistive device, then let them! It's a benefit to society as a whole to have people functioning at their best.

Good luck in your quest!

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hello standing tall. i hope you will get all the help you need! i cannot believe the rules are that different from norway where even seniors well into their late 80's will get rehabilitation and prostethics... keeping my fingers crossed for you:)

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Hi Standing Tall, I am also a NHS prosthetic user, though do not live in Scotland. Am not sure whether I have met another prosthetic user with CP, but have met some with other conditions, though am hearing more and more about constraints on NHS prosthetic usage and people having to set up Trust Funds, which really concerns me.

In England, Prosthetics is now a specialist service commissioned by NHS England, so if you were there, they would be the people to talk to, I imagine you have their equivalent in Scotland. Would also suggest, if you haven't done already, to contact the LA (Limbless Association) http://www.limbless-association.org/and ask them for their support as an amputee living in Scotland, also perhaps your MP, media, anyone really who may be able to help.

There are quite a few UK amputee support groups on FB, some are closed groups and very supportive. Also you may have amputee user groups in your local area, though these are usually set up via prosthetic centres, so not sure if you have accessed any of these. Generally,would say that the larger prosthetic centres often have greater resources, more collective experience that might help you better, you'd need to get referred, either by your GP or rehab consultant, if you have one, but may need to go out of your area and my experience is that you sometimes have to push and keep pushing to get the resources you need.

Good luck and although you don't say how your CP affects you, you sound like you really want to try a prosthesis, so do hope you get a chance to do this.

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