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  • Leah, thanks for posting this. Very apposite for me.

    I had a bit of drama at the end of last year with acute intestinal problems, and was taken by ambulance to hospital, where ‘I saw’ in the New Year. Not to be recommended, in the middle of the pandemic!

    I experienced the worst and best of the NHS. The worst was rather terrifying and dis…[Read more]

  • I am constantly told I’m an inspiration, to which my response is always the same, I don’t feel particularly inspirational. When I reflect on the sentiment behind what is being said, I feel they’re trying to be encouraging and, in some cases, they recognise in themselves a vulnerability that makes them doubt they would be able to cope with were…[Read more]

  • Though I can’t use my legs and have limited use of my hands and arms, I don’t like to be described as bound to my wheelchair.  If someone asks what is the correct way of describing me (not an invalid please!), I am Philip, I have some physical impairment and use a powered wheelchair to get about.

  • Thanks Leah. Isn’t it amazing how somehow we work out how to manage in challenging circumstances?! For me that determination is driven by willpower to keep living as fully as possible.  It is harder for you with both your mum and you needing help when ideally you would be helping each other. Best wishes Leah

  • Leah thanks for sharing your experience.   I’m sorry to hear your mom has MD now.  Bless your dad for stepping in and adapting to help you.  All best wishes Leah to you and your loved ones for the Christmas holidays and 2020

  • Hi Dani

    I now accept that I can’t manage without help and in January will have a f/t PA/carer (I hope).  So will then have my first experience of being helped with showering – and toileting, getting dressed etc.

    I’m not looking forward to another ‘step’ in the journey of lost Independence.  I will have to pay for the care which is a worry as i…[Read more]

  • Philip changed their profile picture 1 year, 5 months ago

  • Philip posted a new activity comment 1 year, 5 months ago

    More than anything, I hope it will be read as a story of my determination to live life to the full and see the humour in my situation and experiences. Ultimately it is about acceptance of what is lost, discovering joy in stillness, and finding hope and new purpose in life.
    • Philip posted a new activity comment 1 year, 5 months ago

      Also I am writing a book (working title Missing Four Feet) about being transformed from super fit, larger than life, to becoming physically impaired and a powered wheelchair user. In the book, I explore the reality of disability, environmental challenges, life-threatening experiences, false hopes and endurance of drug therapies. I plan to…

      [Read more]

      • More than anything, I hope it will be read as a story of my determination to live life to the full and see the humour in my situation and experiences. Ultimately it is about acceptance of what is lost, discovering joy in stillness, and finding hope and new purpose in life.
      • Philip posted a new activity comment 1 year, 5 months ago

        Utilising a combination of my experiences of becoming physically impaired, frequent hospitalisation and international business career, I have ‘repurposed’ myself to do what I can to help individuals and organisations support people with physical impairments and life limiting conditions to live their lives as fully as possible. I’m also…

        [Read more]

        • Also I am writing a book (working title Missing Four Feet) about being transformed from super fit, larger than life, to becoming physically impaired and a powered wheelchair user. In the book, I explore the reality of disability, environmental challenges, life-threatening experiences, false hopes and endurance of drug therapies. I plan to…

          [Read more]

          • More than anything, I hope it will be read as a story of my determination to live life to the full and see the humour in my situation and experiences. Ultimately it is about acceptance of what is lost, discovering joy in stillness, and finding hope and new purpose in life.
        • Philip posted a new activity comment 1 year, 5 months ago

          Thanks Dani and Leila for the warm welcome. After ten possible diagnosis I have an acquired form of muscular dystrophy with a ‘best fit’ atypical sIBM. Previously able-bodied, since 2018 the condition has led to significant muscle weakness causing increasing physical challenges and am now a full-time powered wheelchair user. Though my legs…

          [Read more]

          • Utilising a combination of my experiences of becoming physically impaired, frequent hospitalisation and international business career, I have ‘repurposed’ myself to do what I can to help individuals and organisations support people with physical impairments and life limiting conditions to live their lives as fully as possible. I’m also…

            [Read more]

            • Also I am writing a book (working title Missing Four Feet) about being transformed from super fit, larger than life, to becoming physically impaired and a powered wheelchair user. In the book, I explore the reality of disability, environmental challenges, life-threatening experiences, false hopes and endurance of drug therapies. I plan to…

              [Read more]

              • More than anything, I hope it will be read as a story of my determination to live life to the full and see the humour in my situation and experiences. Ultimately it is about acceptance of what is lost, discovering joy in stillness, and finding hope and new purpose in life.
          • Philip became a registered member 1 year, 5 months ago

            • Welcome Philip! My name is Dani Liptak I am a forums moderator! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any questions in…[Read more]

            • Hi there Philip. My name is Leah and I am a moderator here alongside Dani. I have a rare form of Muscular Dystrophy called Mitochondrial Myopathy that I was diagnosed with at the age of nine through a muscle biopsy.

              Dani and I are excited to have you as a part of the Muscular Dystrophy forum community and look forward to connecting with you. The…[Read more]

              • Thanks Dani and Leila for the warm welcome. After ten possible diagnosis I have an acquired form of muscular dystrophy with a ‘best fit’ atypical sIBM. Previously able-bodied, since 2018 the condition has led to significant muscle weakness causing increasing physical challenges and am now a full-time powered wheelchair user. Though my legs…

                [Read more]

                • Utilising a combination of my experiences of becoming physically impaired, frequent hospitalisation and international business career, I have ‘repurposed’ myself to do what I can to help individuals and organisations support people with physical impairments and life limiting conditions to live their lives as fully as possible. I’m also…

                  [Read more]

                  • Also I am writing a book (working title Missing Four Feet) about being transformed from super fit, larger than life, to becoming physically impaired and a powered wheelchair user. In the book, I explore the reality of disability, environmental challenges, life-threatening experiences, false hopes and endurance of drug therapies. I plan to…

                    [Read more]

                    • More than anything, I hope it will be read as a story of my determination to live life to the full and see the humour in my situation and experiences. Ultimately it is about acceptance of what is lost, discovering joy in stillness, and finding hope and new purpose in life.
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