Disabled people
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medical care

mydadandmemydadandme Member Posts: 1
edited September 2014 in Disabled people
My father is 57 and has spastic cp, degenerative osteoarthritis, asthma and is profoundly deaf. I cannot seem to get his Drs to communicate with each other. His rehabilitation team only administer Botox every 3 months when both me and his gp have requested for them to reassess him. He has completely lost his mobility and is in constant spasms and agonizing pain despite meds. Had his gp out today who changed his dose of meds as he was sleeping for very long periods and becoming unresponsive at times. His chronic pain specialist administers nerve blocks but had said there is nothing else he can offer him other than stronger meds which will turn him into a zombie basically.the surgeons refuse to replace any joints as it is too dangerous and he probably wouldn't get much more movement in them anyway due to spams, muscles and tendons. I am completely stuck and am not liking our options:( I am wondering wether we would get more support from the palliative care team?? Not that I want to accept future but its not looking bright:( x

Replies

  • NoahNoah Member Posts: 430 Pioneering
    edited September 2014
    Sorry to hear that things are not great at the moment, It sounds like you are working very hard to try to give your dad the best possible quality of life, under the circumstances. It must be frustrating that the doctors don't seem to be communicating with each other. Maybe that's something to talk to your GP about or possibly the patient liaison service. Remember you can always request your hospital notes, and sometimes it helps to put things in writing to your doctors.

    I have just been looking up at about palliative care, it looks very good, I certainly like the concept, although have no experience of what it is like in practice.

    When it you have have a huge mountain of different obstacles to try and over come its worth remembering that it is often lots of small things that can make a huge difference. For example:

    You mention he is profoundly deaf, can this be corrected with hearing aids? If not, are there ways other ways he can communicate with people? eg. BSL, communication via technology. Being able to improve communication will have a direct positive impact on his well being, and make it easier for family, friends and carers to understand what he wants and needs.

    His loss of mobility, has that come on suddenly? Does the botox help? What about exploring different mobility equipment, there are some amazing devices and chairs out there. Maybe you can borrow, hire something first to see if its suitable. There may be grants to help with the purchase of equipment if it is needed. A disability exhibition/show is a good place to see what is available. Do you have a mobility centre near you that is on the NHS? Maybe your doctor can advise. Being able to get out and about will improve wellbeing, which might help reduce some of the pain.

    The pain and spasm side of things
    Its about finding what works for you.......I have found that swimming, saunas, massages and some pain relief gels or cold hot/packs that targets the afflicted areas work best for me. I'm not a big fan of taking drugs that tend to have lots of side effects, although i accept and understand they are sometimes necessary even life saving.

    Not sure how much help I have been able to be, just hope that things do improve.

    Please don't give up, and focus on things you can change.

    All the very best

    Noah
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