MSA Trust

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  • #14563
    AvatarBrich69
    Participant

    Hi I’m new to this Forum.. my brother aged 47recently passed. He was diagnosed with young onset PD in 2015.. I was never convinced that he had PD as his decline was so rapid and severe. No PD medication helped. For a short time he was given rotigotine patches which seemed to help the symptoms slightly.. Unfortunately the side effects : severe oedema outweighed the benefits… After sorting through his belongings I have come across 2 patient letters from April 2018 stating Likely MSA-P. After reading about this disease I am certain that this was the problem.. Cause of death was given as enlarged heart resulting in Cardiac Arrest.. Although he was hosptalized with cellulitis in mid Jan 2019 and subsequently discharged after 2 fays with antibiotics. There was no evidence of an enlarged heart.. on 29th January he had his last appointment with the neurologist where he was told in no uncertain terms that he was not doing enough to help himself. And he would be reviewed again in 6 months.. He was a gentle kind person much loved by all he met.. I feel he was let down by the Professionals.. and would like to help in any way possible to raise the awareness of MSA

    #15022
    AvatarDiane Ball
    Participant

    What a sad story and how hard for you to feel that he didn’t get the understanding and support he needed at the end of his young life. Maybe he was so distressed about the potential diagnosis that he didn’t want to face it and so didn’t tell people – if you don’t say it out loud it isn’t real!! It is lovely that you are wanting to raise awareness. Have you joined the MSA Trust and spoken to the people in the office to see if they can guide you. Is there a support group in your area that could use some help?
    Thank you for caring.
    Diane ( wife of MSA Sufferer)

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