Muscular Dystrophy News Forums | Philip | Activity https://musculardystrophynews.com/forums/members/philip/activity/ Activity feed for Philip. Fri, 03 Apr 2026 16:30:19 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 b2148443c4f920ef375d8407bdba3f00 Philip replied to the discussion Taking Fiber Alongside a Laxative in the forum Adults​ ​With​ ​Muscular Dystrophy https://musculardystrophynews.com/forums/forums/topic/taking-fiber-alongside-a-laxative/#post-16597 Wed, 27 Jan 2021 12:57:38 -0600 Reply to Taking Fiber Alongside a Laxative

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… Read more

]]> ca5bc82e7d40fc8cdafd109f734ae5e1 Philip replied to the discussion Feeling awkward towards sensationalizing compliments in the forum Adults​ ​With​ ​Muscular Dystrophy https://musculardystrophynews.com/forums/forums/topic/feeling-awkward-towards-sensationalizing-compliments/#post-15177 Tue, 03 Mar 2020 15:39:06 -0600 Reply to Feeling awkward towards sensationalizing compliments

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… Read more

]]> fb3a2815b21a42b80314b19818052a37 Philip replied to the discussion Being referred to as wheelchair bound in the forum Adults​ ​With​ ​Muscular Dystrophy https://musculardystrophynews.com/forums/forums/topic/being-referred-to-as-wheelchair-bound/#post-15107 Tue, 25 Feb 2020 15:25:39 -0600 Reply to Being referred to as wheelchair bound

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.

]]> 755b777cece85207ada13cfb1d80195b Philip replied to the discussion First Time Having A Stranger Give You A Shower in the forum Parents and Caregivers https://musculardystrophynews.com/forums/forums/topic/first-time-having-a-stranger-give-you-a-shower/#post-14646 Tue, 07 Jan 2020 13:11:08 -0600 Reply to First Time Having A Stranger Give You A Shower

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

]]> c64bf8bdca630695a19d5279e91c30e6 Philip replied to the discussion First Time Having A Stranger Give You A Shower in the forum Parents and Caregivers https://musculardystrophynews.com/forums/forums/topic/first-time-having-a-stranger-give-you-a-shower/#post-14601 Sun, 22 Dec 2019 14:01:33 -0600 Reply to First Time Having A Stranger Give You A Shower

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

]]> 235fb3128d00e14655678af8bfa97bbf Philip replied to the discussion First Time Having A Stranger Give You A Shower in the forum Parents and Caregivers https://musculardystrophynews.com/forums/forums/topic/first-time-having-a-stranger-give-you-a-shower/#post-14557 Tue, 17 Dec 2019 18:51:18 -0600 Reply to First Time Having A Stranger Give You A Shower

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… Read more

]]> 4244295e44ab2d573c60e918d8d7767e Philip changed their profile picture https://musculardystrophynews.com/forums/activity/p/3142/ Tue, 05 Nov 2019 13:43:02 -0600 0 77ee48f3b6e1124dee570c35cc77ecd5 Philip posted a new activity comment https://musculardystrophynews.com/forums/activity/p/3105/#acomment-3141 Tue, 05 Nov 2019 13:37:28 -0600 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.

    In reply to - Philip became a registered member ]]>         6d19dcd9c981d379a18240994453b8cd Philip posted a new activity comment https://musculardystrophynews.com/forums/activity/p/3105/#acomment-3140 Tue, 05 Nov 2019 13:36:39 -0600 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… Read more

    In reply to - Philip became a registered member ]]>         81a47929cd3228270432acb63940480c Philip posted a new activity comment https://musculardystrophynews.com/forums/activity/p/3105/#acomment-3139 Tue, 05 Nov 2019 13:31:42 -0600 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… Read more

    In reply to - Philip became a registered member ]]>         5bb6f35f24831935b04fe35017831f90 Philip posted a new activity comment https://musculardystrophynews.com/forums/activity/p/3105/#acomment-3138 Tue, 05 Nov 2019 13:31:16 -0600 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… Read more

    In reply to - Philip became a registered member ]]>         cfe03e4ac217c728a1d7eeb94586a375 Philip became a registered member https://musculardystrophynews.com/forums/activity/p/3105/ Sat, 02 Nov 2019 13:30:48 -0500 6