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Thread: WHEN YOU HAVE DIFFICULTY COMMUNICATING AND MEDICAL STAFF HAVE NO KNOWLEDGE

  1. #11
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    Quote Originally Posted by d@rk51d3 View Post
    Glad you're home again Mario.

    We have a close family friend going through exactly the same thing with MSA.
    There needs to be more awareness, unfortunately I am but one.
    I shot an email a few weeks ago to Rhonda Burchmore asking if she could help as I know her sister was taken by this disease and has a charity called NueRA.

    There is no awareness as death certificates dont list MSA as the cause of death because MSA will cause a heart attack, aspiaration resulting in pneumonia, asphyixiation, infection from a UTI, a PEG feeding tube, a tracheostomy and these are then listed as a cause of death

    I belong to a face book group of sufferers, but memberships declines as they silently pass on.

    Then sadly ( I say sadly because I wouldn't wish anyone to get this) we get new members and carers joining and it is always mentioned medical people are unaware of this disease and are reluctant to attend the ER because of this.
    Many fall and hurt themselves breaking bones like ribs etc.

    When I was able to go to the physio's rooms , there was a chap doing sessions with me. A quiet, nice bloke. I was never told what he had, due to medical privacy. But watching him I assumed he must of had MS or parkinsons.
    I found out recently he was initially diagnosed with parkinsons, which now I find he has been re diagnosed with MSA
    when I heard the news my eyes started to tear.

    There is research happening and the is something in a stage 3 trials happening in the UK and USA of a drug that in laymans terms is some sort of oxidiser that switches something off in the brain slows the progression of the loss of one of the two proteins we are loosing in the brain. Many are hoping this will help them but being realistic if your in an advanced stage then it's not going to regenerate what you have lost. This is keeping their loved ones hopes up, but once your in the pallative care phase it is going to be too late

    One of the members had this made up, which they carry around, a laminated note. This got me thinking having a medallion made, some thing that had info stamped on it that you could wear and maybe a QR code on it. Every one has a phone these days. Just me thinking.
    237192598_3017411121912038_8056420818933783423_n.jpg


  2. #12
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    That laminated note is great Mario. As a health care worker Id be more inclined to prefer a patient is that instead of a QR code. I cant always have my phone in my hand and a laminated sheet like that one give ask the info that Id need to know. The only other thing you could add is a date of birth and the contact details of next of kin/power of attorney.
    "Land Rover - making mechanics out of everyday motorists for nearly 70 years"

  3. #13
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    Quote Originally Posted by John_D4 View Post
    That laminated note is great Mario. As a health care worker Id be more inclined to prefer a patient is that instead of a QR code. I cant always have my phone in my hand and a laminated sheet like that one give ask the info that Id need to know. The only other thing you could add is a date of birth and the contact details of next of kin/power of attorney.
    <br>
    John, every one wit MSA is different the key words are "Multi System" meaning can effect everything in your body it's the autonomic nervous system so you would need a laminated A4.


  4. #14
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    Quote Originally Posted by Roverlord off road spares View Post
    <br>
    John, every one wit MSA is different the key words are "Multi System" meaning can effect everything in your body it's the autonomic nervous system so you would need a laminated A4.
    While talking with bureaucracy this morning I now see it as a minor bother Mario. Thanks for sharing. The issues with health care are many and quality of care varies. For most of us that's a minor issue. When you really need help it is a major issue.

    Years ago a gent who was dying wanted to die at home. The dramas to allow him to get that wish were huge. It happened by the efforts of a wonderful Doctor who was not his Doctor until that point. I know for a fact dozens of others had refused to help to allow him to be released from hospital to get his wish.

    With out any doubt your helping a lot of people learn more about MSA. Thank you

    Hope the Lift arrives soon and more help via NDIS is provide for both you and Heather.
    Keep shouting it mate



    Regards James

  5. #15
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    Quote Originally Posted by Roverlord off road spares View Post
    There needs to be more awareness, unfortunately I am but one.
    I shot an email a few weeks ago to Rhonda Burchmore asking if she could help as I know her sister was taken by this disease and has a charity called NueRA.

    There is no awareness as death certificates dont list MSA as the cause of death because MSA will cause a heart attack, aspiaration resulting in pneumonia, asphyixiation, infection from a UTI, a PEG feeding tube, a tracheostomy and these are then listed as a cause of death

    I belong to a face book group of sufferers, but memberships declines as they silently pass on.

    Then sadly ( I say sadly because I wouldn't wish anyone to get this) we get new members and carers joining and it is always mentioned medical people are unaware of this disease and are reluctant to attend the ER because of this.
    Many fall and hurt themselves breaking bones like ribs etc.

    When I was able to go to the physio's rooms , there was a chap doing sessions with me. A quiet, nice bloke. I was never told what he had, due to medical privacy. But watching him I assumed he must of had MS or parkinsons.
    I found out recently he was initially diagnosed with parkinsons, which now I find he has been re diagnosed with MSA
    when I heard the news my eyes started to tear.

    There is research happening and the is something in a stage 3 trials happening in the UK and USA of a drug that in laymans terms is some sort of oxidiser that switches something off in the brain slows the progression of the loss of one of the two proteins we are loosing in the brain. Many are hoping this will help them but being realistic if your in an advanced stage then it's not going to regenerate what you have lost. This is keeping their loved ones hopes up, but once your in the pallative care phase it is going to be too late

    One of the members had this made up, which they carry around, a laminated note. This got me thinking having a medallion made, some thing that had info stamped on it that you could wear and maybe a QR code on it. Every one has a phone these days. Just me thinking.
    237192598_3017411121912038_8056420818933783423_n.jpg
    I work in the health industry and one thing that I have seen people do is put all relevant information - condition, symptoms, issues, next of kin - contact details, your GP or specialist to contact - all on a USB stick on a lanyard. Of course that depends on what has happened, and where you are for people to be able to access the information, but easy to save any updated data as time goes on. However, if not being able to talk in the first place a simple alert bracelet or pendant can work so people quickly identify this. Sadly I can relate to your story and hope you have better experiences as many of us are in the industry for the right reasons...to care and support.

    Helen
    'sit bonum tempora volvunt'


  6. #16
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    my Doctor did a home visit, actually just left few mins ago, he is going to prepare a custom file for me with key issues , info etc,treatments in progress.
    My Doc had a large multi paged discharge file on me from the hospital, it seems they were worried about me aspirating and getting pneumonia, hence the liquid restriction and making me sit i a chair after a few days saying they wanted me sitting me reclined to stop pneumonia.
    It seems strange that when I told them I had a risk of aspiration and give me my tablets 1 by 1. so why did robo nurse give me 8 in one mouthful


    My speech pathologist is calling in to see me on Thursday.

    Physio called in to see me this arvo.

    I had a issue this morning when i woke up and my BP was over 200 resting, it wouldn't come down, got it to normal by getting up then it violently dropped and settle back to normal.
    I was suggested to me next time if I need non life threatening hospitalisation to see if they can take me to Box hill hospital and it is a major hospital and has better facilties. I've been there before and have more specialist.
    He tweaked all the meds I'm on and deleted and replaced some. so hopefully it sorts itself out.

    There's no dodging the fact I'm going to deteriorate further, and many have mentioned this to Heather, but she is determined to look after me until the end and keep me home. I enquired with one of my supports and pallative care in home is available. I'm sorry Heather has to go through this with me. It makes me feel guilty and that I might be selfish. Our wedding vows said for in sickness and health.


  7. #17
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    Nothing is selfish about your situation Mario.
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  8. #18
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    Mario, Heather wants to look after you, let her do it.
    If Heather was crook, you'd want to do as much as you could for her, because you love her. She loves you too, let her show it.
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  9. #19
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    Yesterday evening I was sitting in my recliner watching tv when I started to get that dizzy about to pass out feeling, I lid my head back into the head headrest. I don't recall what happened after. heather later did tell me that I as asleep. I woke up and started to watch the TV but there was no sound. I grabbed the remote and turned up the volume , still nothing , then checked the mute control, Heather was talking to me but i couldn't hear, I had woken up ad DEAF!]
    After about 1/2hr I could hear a crackly, very faint wah wah wha of the tv Then my hearing gradually returned.
    this freaked me out. We rang my doctor this morning to ask if this is part for what I have. He's not on until 1pm, so waiting call back


  10. #20
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    Quote Originally Posted by Roverlord off road spares View Post
    Yesterday evening I was sitting in my recliner watching tv when I started to get that dizzy about to pass out feeling, I lid my head back into the head headrest. I don't recall what happened after. heather later did tell me that I as asleep. I woke up and started to watch the TV but there was no sound. I grabbed the remote and turned up the volume , still nothing , then checked the mute control, Heather was talking to me but i couldn't hear, I had woken up ad DEAF!]
    After about 1/2hr I could hear a crackly, very faint wah wah wha of the tv Then my hearing gradually returned.
    this freaked me out. We rang my doctor this morning to ask if this is part for what I have. He's not on until 1pm, so waiting call back
    Spooky plus Mario. Hope that settles down mate.

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