Cerebral Palsy
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Baclofen Do you have experience of alternatives please?

TonyHTonyH Member Posts: 10 Listener
edited April 9 in Cerebral Palsy
Hi
If anyone can refer me to a previous discussion please do or suggest where to try, that would be great.
(The original aims of this charity covered my Uncle's position).  Thanks
 
I noticed my uncle repeatedly return to his old self on admission to hospital, despite needing hospitalisation.  I found the hospital back then took two days (at least) to put him back on his standard medication.  A real blessing!  Narrowing the problem down to Baclofen, his helpful GP happy reduced the dose and once the benefits faded reduced the dose again and again etc. To 2.5ml, three times a day, The difference was brilliant except keeping the carers dosing at this level has been a major headache, although until a month ago not this year.
Boxes of Co-Codamol on PRN (patient Request Needed) by the why usually simply pile up, until the GP surgery respond and remove a load.
What I find is his short term and medium term memory 'appears' to be lost, getting the dose as prescribed or previously reduced and he's back again and his usual excellent company,  I say appears as even when he can't recall his question has been answered 20 times in a short time he has demonstrated priming by others from various responses over the years.  This is 'not' a criticism he's been bed bound for years and having seen him fight for life in hospital, he loves life (does get down at times, don't we all) and has become totally dependant on his carers over the years and without them he could not manage.  He's on the coast, I'm London based and down there usually between one and two times a week.
That's the back ground, I was probably best alerted to the problem by a variety of unwanted effects on myself of eye medication.  His helpful GP advises there is no alternative to Baclofen and just looking through the web does not appeal to me

Guidance, constructive suggestions where to try next even and your time all greatly appreciated
Many thanks!!
(I'm getting worn down, ta)
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Replies

  • TonyHTonyH Member Posts: 10 Listener
    PS, Using Search I find posts on Baclofen but cannot access them (already logged in) Ta
  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    Hi @TonyH - & welcome to the community. As you rightly say, Scope has it's roots in helping people with CP, & we have many members that have this, & also a CP Specialist Information Officer that has quadriplegic CP himself. I will ask him for his help, but there will be a wait possibly of a few days before he returns. @Richard_Scope please can you advise here, thank you.
    I'm sorry that the 'Search' button has not been working since a fairly recent url change for this online community. In the meanwhile you could have a look at Scope's CP section. Please see: https://forum.scope.org.uk/categories/physical-impairments-and-cerebral-palsy  & some info on Botulinum Toxin A, which 'might' be an alternative: https://www.scope.org.uk/advice-and-support/botox/   Richard will however know more, & thank you for joining to help your Uncle.
  • TonyHTonyH Member Posts: 10 Listener
    Hi Chairieds
    Thanks
    Here is hoping @Richard_Scope might be able to access the search function a different way & supply page addresses.
    Nice to know it's not just me unable to follow through to the threads found by Search. Ta!
    makes for reassuring reading & I will keep looking
    My Uncle was 90 last year & with his Baclofen dose level so low my automatic reaction is to steer away from Botox, noting the present problem may still be administration, as in being given more than prescribed
    Thanks

  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    Hi TonyH - thank you for replying. Richard will give you the best of his advice, rest assured.
    I appreciate the problem with meds for your Uncle if they're mis-administered, which isn't something I'd factored in. I did a search as well, but there's a paucity of research on what might help in adults with CP; something Richard is well aware of, & has been campaigning & advising about.
    My best wishes to you & your Uncle.
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    Hi @TonyH
    Good to meet you virtually.
    There are alternatives to Baclofen but as I'm sure that you are aware all medication has side effects. Two alternatives that I know of are Tizanidine and Sativex. You can discuss these with your Uncle's G.P. I agree that mis-administered medication might be contributing to your relative's memory loss but there might be other issues at play here that need to be investigated.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • TonyHTonyH Member Posts: 10 Listener
    Hi Richard
    Good to hear from you. Thanks.

    Baclofen talked about at length with GP, resulting in reductions in dose but GP's always stated there is only Baclofen that helps (CP) muscles
    Reductions helped every time, but your point could be other matters, of course is valid.

    I'll try some background reading on Tizanidine and Sativex.

    Any forecast as to when the Search function on the forum might running again, please?
    (not tried it tonight)
    Thanks


  • TonyHTonyH Member Posts: 10 Listener

    Good to hear from you, Thanks!

    Baclofen talked about at length with GP, resulting in reductions in dose.
    GP's always stated there is only Baclofen that helps (CP) muscles, which is partly why I've tried this forum (as Google appears to disgree as well)

    Reductions helped every time, but your point could be other matters, of course is valid.

    I'll try some background reading on Tizanidine and Sativex.

    Any idea when the Search function on the forum might running again, please?

    Thanks


  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    What search terms are you using? The search function will bring up discussions and any advice pages we hold on a subject. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    @Richard_Scope - the 'Search' function doesn't appear to be functioning correctly, perhaps since the url change for the community. It brings up related discussions, but clicking on any of them just brings you back to the home page.
    Clicking on 'say hello to our newest community members' does the same.
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    Thanks @chiarieds I will get this looked into.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TonyHTonyH Member Posts: 10 Listener
    Thanks @chiarieds for explaning the Search problem to @Richard_Scope & thanks Richard for chasing it.
    Just been using the Search function. Interesting reading, it's already suggested the Baclofen dose needed reducing (over relaxing muscles) many years before I chased it. Will continue reading & try and sort out how I refer to your kind selfs with links not just text (no trouble previously :))
    Thanks
  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    Hi @TonyH - & good to hear from you. Pleased you've found, as I have done, that Richard_Scope got the 'Search' function sorted. I would imagine that your Uncle's GP is in the best position to help, &, if you feel comfortable with it, discuss Tizanidine and Sativex that Richard mentioned.
    if you see a link that you find helpful, & would like Richard to discuss further with yourself, just click on it at the top of the page (the https bit) to highlight the whole link, then right click your mouse & then 'copy' the link, then right click your mouse again to say 'paste' in a message here. Sorry, I don't know how it works with other devices (I use a desktop computer & Linux as an operating system, but the old commands such as Control & C to copy, & Control & V to paste should also work). If it's a discussion here on Scope, right click & go down to 'View page info,' highlight the address that opens up in a smaller window, right click to copy that, then paste that in your message.
    Hope to hear from you again. :)

  • TonyHTonyH Member Posts: 10 Listener
    Hi @chiarieds
    Thanks
    Still reading what Search throws up. 
    The GP is great but only believes Baclofen exists for CP so plan to keep reading to give as rounded a commentary to him as possible. 

    In case it helps:
    To follow a link that 's given in text or wherever:
    Highlight the link (in the text recommending the link)
    Then press the keys
    Control + C 
    ( press the 'Ctrl' keyboard key plus the letter 'C' key, as you say to copy highlighted text)
    Then:
    Control + T   (to open a new tab)
    Then:
    Control + V
    Then press:
    Enter   (press Enter keyboard key to go to the link - if the link is still operational, old ones may not be)

    Or yes, just copy and paste into a new tab and press enter
    Well on this old Linux box I'm using
    ;)
  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    Hi @TonyH - I also use Linux (the Peppermint version of) & have used the Control & C to copy, & Control & V to paste too! Not many of us about, but Linux is a great OS.
    I don't know if it helps, but when I thought my family also had another genetic disorder, I printed stuff off for my GP. I was probably most fortunate in that he used to say to me. 'what (medical papers) have you brought in for me today?' He believed in me, & said in 10 years time it will be probable that some will have both disorders.
    Might it be an idea to do the same looking at Tizanidine and Sativex. Would you like Richard to give you links about these meds & that they can help with CP? I'm sure he would, & I would be happy to ask him.
    Whilst looking through searches here will help, Richard will know more. :)

  • TonyHTonyH Member Posts: 10 Listener
    Thanks @chiarieds
    I typed up my notes so far tonight.  I had in mind posting them for criticism before approaching the GP again, also hoping they might be of some use and an indication to what can be found using Search.  But even with an abrupt style and brief introduction (to try and give some relevance) I found my self on page three and I've loads more to read it looks.  So in this case I hear you and it looks like the notes will be a better copy of my handwritten scrawl only.

    Peppermint
    I was surprised to find on it's home page there was a new release in October 2020 as at Distrowatch.com (  https://distrowatch.com/table.php?distribution=peppermint  ).   It appears to list tonight that the last release was in 2019.  I'm not familiar with Peppermint OS and steer away from web based applications.  Hope it works well for you.
    Times, they are a changing, but Apache (Linux) is what the web used to run on..... ;)


  • chiariedschiarieds Community champion Posts: 7,500 Disability Gamechanger
    Hi @TonyH - I'm absolutely sure you know more about Linux than I, as I'm a newbie. I tried several distros before settling on Peppermint (at the time Peppermint 7), & the forum was great. The developer of Peppermint was ever so patient with me, & helped enormously. Sadly he died a year ago. I've updated, & am now using Peppermint 10 respin, which did become available in 2019 as you say. As far as I can see Peppermint 10 respin is the latest version. See: https://peppermintos.com/
    Anyway, hoping you don't mind, I'll ask @Richard_Scope for some further help. It might not always be the correct approach, but I found Drs 'listened' when I tried looking at it from their perspective by giving references to medical literature. It's not always what you've found, but where you found it from, so 'perhaps' medical references will help. One Professor I met I gave a short (just less than 2 sides of a page) review of the medical literature I'd looked at followed by 48 references to medical papers. The latter somewhat threw him. :)

  • TonyHTonyH Member Posts: 10 Listener
    Hi @chiarieds
    Linux
    You'll soon exhaust my knowledge I'm sure, I've done little but use Linux on old kit but if your thinking of starting a new thread on Linux, Peppermint copy me in ;)

  • TonyHTonyH Member Posts: 10 Listener
    Hi @Richard_Scope
    Private Message
    The Search Function on this forum is a valuable tool, many thanks for prompting it's restart after @chiarieds kindly approached you.

    The Helpline has long shut tonight and I'm quite capable of missing it's open hours for more than a few days.  I'm also wondering if a detailed CP inquiry would be redirected to you?

    Seeing to start a PM I need have made 25 posts I realise I should have kept chatting Linux to @chiarieds.  Sorry @chiarieds !! Really Sorry!!  I was just trying keep the thread to Baclofen and alternatives and open up the Linux chat to others, (even more than I have on the phone this afternoon)
     
    It's possible the surgery my uncle underwent was SDR
    https://www.scope.org.uk/advice-and-support/selective-dorsal-rhizotomy/?_ga=2.169840673.1498452896.1611075947-1788777485.1611075947
    or something similar, I appreciate your stating this is not something you are personally familiar with.  The nearest Regional Centre is GOSH.  https://www.gosh.nhs.uk/health-professionals/clinical-specialties/neurodisability-information-health-professionals/clinics-and-services/selective-dorsal-rhizotomy-service
    Can I ask questions and provide detail directly please? 
    By responding to your invitation.  I would hope after editing they could be reused in the forum, once I have discussed this with my Uncle.

    One question would be.
    Is it possible to arrange for someone preferably with personal experience of CP to visit a home bound elderly man with CP, my uncle, in the Thames corridor area?
    His local DNs are simply great, the team Leader special, his GP great and more that's area specific and I'm repeatedly reading things where an experienced eye might say more than it's simply too late, again
    Thanks



  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    Hi @TonyH
    It is very possible that your uncle has had surgeries during his life. SDR is fairly new but he may have had a forerunner of the procedure as I have.
    Scope would not be able to provide visits to your uncle's home, unfortunately. I would suggest that you ask the G.P. to refer your uncle to UCLH Adult CP Team where he can be assessed and supported by a multi-disciplinary team.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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