Leave No-one Behind

Some of you may have seen my tweet about my dad yesterday.

It would have been his 76th birthday, but MS took him from us shortly after his 35th, back in 1978.

Of course, MS was vastly different back then – no DMD’s, no MRI’s, no MS nurses and no real understanding of the illness. A severely weakened immune system with no way to stop it meant that people like my dad were susceptible to normally-treatable illnesses.

Thankfully medicine has moved on in leaps and bounds over the following decades and a diagnosis of MS is no longer seen in the same way it once was.

When I was diagnosed in 2012, there was an abundance of medicines, support, online help and a plethora of organisations who reached out and helped me through the Newly-Diagnosed forest.

I count myself as immensely lucky to be living in these times. My medication held back the onslaught of the worst that MS could throw at me, and I was able to see my son through high school and into university. Unthinkable for a lot of people just a few decades earlier.

I admire the drive to cure, and the medicines which are life-altering for so many people. Yet, we must also concentrate funding efforts on living with MS. Many people with MS cannot access treatment or are ineligible for DMD’s. Money must be found to support people, and their families, who fall in to this category.

I know first-hand the utter loneliness and isolation MS can bring. The depression (rates which are a whole lot higher than for the rest of the population), the despair. We need to ensure that every single person with MS, whether they may benefit from the shiny new medicines or not, are supported and cared for.

Families too must be supported. Child-carers should never exist. Partners of people with MS must have access to support. But we know this simply does not happen. Benefit cuts, gruelling re-assessments for our incurable illness, lack of work options, a non-supportive, primarily able-bodied society. These all combine to make life with MS an all too often uphill struggle.

No one should face MS alone, whether it is the person with MS or their child, or their partner or their family member. In amongst the joy of new treatments, we have to reach out and gather everyone who lives with or is affected by MS with us.

My dad was apparently a bit of a cheeky monkey (so that’s where I get it from). Once a keen mountaineer, an industrial chemist, a father of four and a husband, I hope he has left behind a legacy that I can do a little bit to move forward.

As I said in my tweet, I miss him more as each year passes. I will never be able to talk with him, the one person who would understand what MS has brought into my life. He remains ‘back then’.

But I’d like to think he would want to look forward, to a future where no one is left behind with MS.

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8 thoughts on “Leave No-one Behind

  1. Nanette Lewis-Head says:

    Barbara you certainly have amazing courage and resilience.l am also glad that you are sharing your experiences.you are to be admired and supported. It cannot be easy.Thinking of you.
    Nanette

    • stumbling in flats says:

      Thank you so much Nanette! It’d be great to catch up with you some time, I miss our chats 🙂 X

  2. Helen says:

    Thank you for all that you do. Although I do have a close family I often feeel very alone and in despair. I had a great career in teaching and so much energy. I took early retirement to start enjoying other things in life and four years later was diagnosed with MS, 2004. Every day is a struggle and I am so frustrated by all the things I need to do but can’t.
    I was so looking forward to spending Mother’s Day with my family and organised lunch at a lovely restaurant. Lunch over, my husband went to bring the car round to the entrance while I cautiously made my way out assisted by my daughter. My leg decided to give way completely and I fell across a table. Two men came to assist me and carried me through the whole length of the restaurant. People looked on sympathetically and that was kind but to be honest I felt very sad and humiliated. Yes, I do feel sad behind the painted smile but thank you for providing a place to share with people who understand.

    Helen

    • stumbling in flats says:

      Helen, I am so, so sorry to hear that. It must have been awful for you.
      I once tripped over spectacularly in a restaurant and felt so embarrassed. I tried to explain to the people I fell in front of but they didn’t seem to understand 🙁
      I hope you’re having a better day today 🙂
      Bx

  3. Joan (Devon) says:

    My spectacular fall outside the home was in Currys, the electrical shop, in Bridgend. At the time I was only using a stick for my balance and went sideways onto a display of cameras. A few people helped me up including my husband, but the thing that stands out for me is that not one of those cameras moved. Not an inch! It’s like they were stuck to the glass shelf. At least there weren’t any damages to pay for, lol.

    • stumbling in flats says:

      Bless you! At least there were no cameras broken.
      Seems like everywhere is a minefield when you have MS. I hate walking anywhere on my own these days, so seem to spend a lot of time at home, where at least I feel safe, and can rattle around quite the thing!
      X

  4. Living with advanced MS is no joke. If diagnosis was before decent drugs became available and SPMS had started or you have PPMS then even today the outlook is grim.

    The general public need to made aware of these people and how MS has significantly changed their lives for the worse. As the disease advances the ability to go out and mingle in restaurants, shops, cafes etc becomes harder and harder. Not only do you have hidden disabilities but you are also a hidden person.

    We need to increase awareness of this particularly unpleasant life-changing element of MS

    • stumbling in flats says:

      I totally agree, and there needs to be far more awareness. I will do everything I can to ensure this happens. X

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