Recently diagnosed with Motor Neurone Disease, this is my own personal account of how I cope with the every day trials and tribulations of life.

Another Move

We’re hoping to move into a ground floor flat next Saturday further up our street.  For me, it will be the fourth property I will have lived in on this street alone.  I think everyone knows this street is where my heart lies and I have called it home for over 18 years now.  It’s not really what I anticipated having to move again when we downsized back in May 2016 but it’s a necessity due to medical reasons.  I am struggling to manage the stairs and as for gardening now, well that’s a forgotten chore or pleasure depending on the mood that would take me when I did the garden.

I am hoping that this will be my last move and that I will have a few years in our new home.  Although as the MND progresses, nobody knows what it has in store for me.  So, it is with mixed emotions that we are packing up ready for next weekend, although I would never have envisaged that ground floor flats are like buses because we have also been offered a ground floor flat a few blocks away from my youngest daughter Hannah.

It also means I can have a massive clear out as we pack up and between my husband and my youngest daughter, they are having to be ruthless with me to part with my junk or crap but, that said, I suppose it will make life so much easier for all of us when it comes to moving next weekend.   While the move is going ahead, my daughters and me will be enjoying my Christmas present when we go to see a performance of “The Lion, The Witch and The Wardrobe” at the West Yorkshire Playhouse and I am excited about that as well.

Ah well, to bed I go.

Lots of love

Angie xxx

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A New Beginning

I hate New Year’s Eve even more than I dislike Christmas.  I know for a lot of people it means a fresh start.  Some will make New Year’s Resolutions (although I don’t see the point in them myself –  every single one of them is broken before noon on 1st January so you might as well not bother).  However, this year which has seen our worst year yet, I now have a legacy from 2017 to take forward into 2018 and that legacy is Motor Neurone Disease. And I hate that more than New Year’s Eve.

I wish with all my heart and soul that, through research, the progression of the disease can be slowed down even further but I doubt this will ever be in my lifetime.  I just hope to spend the next day or two quietly at home with Tim.  Marrying Tim was my highlight of the year even though the man drives me insane.  I have projects I would love to see through and get them finished but there are no New Year’s Resolutions for me this year, I’ve already lost a lot of weight as a result of MND (although it’s not how I would recommend anyone losing weight).

We are moving soon which will be a relief after I had that fall that I don’t have to negotiate stairs in our new home.  It will also give me peace of mind for Tim’s future and that it will be secure.  I know one thing for certain, being diagnosed with a terminal illness has blown my lifelong battle with depression right out of the water.  It has put so much into perspective and what is or isn’t important to me.  Those people who matter the most are the ones who are truly there to support us every step of the way with this terrible disability.

However, if you are celebrating over the next few hours – Happy New Year to you and yours.

 

Lots of love

Angie xxx

Christmas Time

The festive period and leading us into the New Year always has mixed emotions for me.  It should have been a time for family and happiness and, of course, celebration as my daughters Charlotte and Laura would have celebrated their birthdays within two weeks of each other at this time of year.  Laura would have been 24 years old on Thursday (28th) and Charlotte would have been 25 years old on the 10th January.  I never forget them, there isn’t a day goes by when I don’t think about them and how they would have grown into two beautiful young women like their younger sisters.

That aside, we did something different this year.  I definitely want to make a lot of memories for those closest to me and I know I am as daft as a brush sometimes.  So, we had an invite to my sister Nicky’s for Christmas Day and I decided it was the best thing for us to do, spend time with my sister and her children, after all, Christmas is for the children when they’re so excited that Santa has been.

I will admit, the walk from my front door to the taxi was a massive achievement for me because I am so unsteady on my feet, even with a walking stick now.  And to get to my sister’s and into her house was also a massive achievement.  I missed eating a turkey dinner with all the trimmings.  Christmas dinner has always been one of my favourite dinners and I love Christmas pudding with brandy or rum sauce but, again, I missed it this year – all due to MND.  Merry Christmas MND because there is one thing I am going to make sure of, this isn’t going to be my last – not yet anyway!

So a big thank you goes out to everyone who has supported us over the last 8 months.  We are so grateful for the support everyone has provided and a big thank you to my sister for giving me a Christmas to remember.

All that remains for me to say to you all is – Merry Christmas everyone and for those with missing loved ones, they are always in our hearts and thoughts, so while they might not be here with us, they are with us in spirit and I hope it brings some comfort to you.

Lots of love

Angie xxx

A Day Out

Two days ago, last Friday (15th December 2017) started out as my typical usual day.  I get up whenever I feel like it now.  I have nothing to really get up early for anymore and after the usual first things first, (toilet and washing of hands), I managed to get downstairs and ready to find something palatable which I could have for breakfast.  Gone are the days when I would have cereal and be rushing around to get ready for work.

That’s where my usual day came to a crash, quite literally because while I was in the kitchen, I turned to put the lid on my thickener so that my better half wouldn’t knock it over and spill it everywhere and, not wearing my ankle support, I lost my balance, fell and banged my head on the kitchen wall.

The thing which shocked me the most about the fall was that because of my weak left side, I couldn’t get back up and Tim tried to get me up but to no avail and I broke the adaptor off my PEG (though that wasn’t a worry because I have spares). It really rammed it home to me just how much the MND has now progressed.  I sat on the floor crying hysterically at first but that calmed a bit.  My beloved Oscar sat with me.  Tim rang around the Doctors and District Nurse Team, they suggested he call for an ambulance and he did – three times he rang them and was told at one point that they could take up to 90 minutes to get back to him.  Oscar never left my side until the ambulance arrived.

Thankfully, they didn’t and the ambulance crew were absolutely wonderful and amazing and got me up off the floor safely.  They managed to get a stretcher into the house and took me to A&E at the LGI .  Not the sort of day we would have had planned just 10 days before Christmas but it was better to be safe than sorry especially with the head injury which has now resulted in a right shiner than even Frank Bruno would have been proud of in his boxing days.

I had all the usual checks, bloods taken, blood pressure, an ECG and a CT scan and everything has come back fine.  They did say my heart rate was a bit fast but that could have been down to the stress and shock of the fall and the consequences.  Let’s just say that I now wear my ankle support all the time and it is only coming off when I have a shower.

Our NHS are wonderful.  They are so dedicated and hard working even in the most trying of circumstances and we need to protect this valuable service that we count on in such distressing times for future generations.  That aside, they managed to get me up off the floor and safely into hospital.  When we left it was dark and even the taxi driver was amazing given that when  he dropped us off, Tim asked him to wait while he got my power wheelchair out of the house and he did without complaining.

The fall has shocked me and knocked my confidence in myself and how much I am able to do now.  I know the MND is progressing, although it is slowly progressing which is down to the riluzole, had I not been on riluzole, I dare say these falls would have been more common place.  For me, now, it’s all about staying as safe as I possibly can because I don’t fancy a repeat of Friday’s visit to A&E.

Lots of love

Angie

xxx

 

I have had a few over emotional days since my diagnosis but every time I go for a MND clinic where, as MND sufferers, we get to see everyone on their team in one clinic, it takes the stress out of having several hospital appointments for the different specialist services we need, for example, at one clinic, I will probably see the specialist nurse, the dietitian, the speech and language therapist and the physiotherapist, I seem to be holding my own against MND and doing as well as can be expected.

At my most recent clinic, I saw the nurse and the speech and language therapist.  As my swallowing deteriorates a little, although some days are better than others, I will be trying a pureed diet.  This is a change for me since my diagnosis but a pureed diet does not fill me with joy or even make me remotely hungry.  I have been eating blended food and it doesn’t look appetising at all.  The speech and language therapist sent me a brochure for Wiltshire Farm Foods and their pureed food looks really nice.  The idea is to make it look appetising and to give sufferers with swallowing difficulties food that not only looks good but is a dignified way of eating pureed food.

They puree the food and then use molds to shape it into what it is meant to be, for example, a pureed chicken breast actually looks like a chicken breast thanks to the mold.  I am going to try this because it is getting to the point that I am eating very little and this is having the adverse effect on my energy levels which are very low.  If I like the food, I am considering buying molds and preparing my own because although having meals in the freezer are convenient, there’s nothing like a home cooked dinner and I am hoping that all this can be done in time for Christmas so that I can enjoy a Christmas dinner this year.

And all this coming from a “foodie”, I loved my food when I was well, to the point, I became an emotional eater and had to battle with my weight on more than one occasion, although the biggest achievement for me the self-confessed “foodie” was when I got to and maintained my goal weight for over two years, that was in February 2005 and what I would give to be that healthy and well again is indescribable.  My recent Facebook post was that I wish this was all a bad dream which I could wake up from but, alas, it’s not to be, it’s my life and a reality.

Still fighting.

Lots of love,

Angie xxx

 

Last night’s Holby City on BBC1 has created a bit of a stir about Motor Neurone Disease.  I didn’t actually watch the whole episode and, if I am honest about it, I am not bothered about what happened in the episode, after all, it is just a storyline in a medical drama television programme and even though I was diagnosed with this terrible disability back in April 2017.

Apparently there was a mention of stem cells being used to reverse or cure Motor Neurone Disease.  From what I have read about it myself, the use of stem cells in MND is still in its infancy and is probably not going to be a cure for the disease.  Currently, at the time of writing, there is no cure and the damage cannot be reversed as was suggested in last night’s episode.  This minor blunder on the part of the researchers who are involved with Holby City needs to be addressed merely because it can give some sufferers, especially those who have just being diagnosed false hope and for others like me who know better, we might be in a minority group but we should not be overlooked.  There is one thing that probably all MND sufferers and their families have and that is hope.  We all hope, just like with HIV and AIDS that there can be a way of slowing down the progression of MND.  That is all we have and for those who watched this episode, there is nothing worse than believing there is some sort of miracle cure when there isn’t one to date.

Hope is all we have, I have noticed that my upper left arm is becoming harder to lift up and my left foot is completely limp and just hangs at a funny angle because the MND is slowly progressing.  I say slowly, it has been almost 8 months since my diagnosis and it’s almost a year since the symptoms were first noticeable.  I do try to get up and fight this debilitating disability every day but it is taking its toll on Tim and me both physically and emotionally.  It is draining for both of us at the best of times, so we don’t need a drama programme being factually inaccurate which I know the BBC pride themselves on their drama programmes being accurate.

That aside, I love the BBC’s drama programmes, they are some of the best.  I have currently being enjoying The A Word which is in its second series and broadcast on a Tuesday evening at 9:00 pm and Love, Lies and Records which is in its first series and broadcast at 9:00 pm on a Thursday evening.  The BBC can bring us some excellent dramas and I do believe they are worth the licence fee we have to pay for them.

I just hope that if this factual inaccuracy is brought to the attention of the BBC, that they can issue a statement putting it right.

I also find that while any illness is a time when people are anxious about their loved ones or themselves, it really annoys me how some illnesses and diseases have a much higher profile than Motor Neurone Disease.  I know how important raising awareness for the likes of cancer, diabetes, and dementia is but with the exception of the latter, they can be managed and, unless they are aggressive or rare, they have a good survival rate and are probably not the death sentences they once were.  However with Motor Neurone Disease, this is not the case.  There is no cure and the current medication which slows the progression down has been in use for 22 years but it does not stop the disease from progressing.  This disease needs to have its awareness and research put as high in the public domain as the likes of cancer and not just for one month of the year.  So, come on, let’s have this disease highlighted so that sufferers and their carers can feel that there is something to feel hopeful for and that we are not alone just because we are in the minority.

 

Lots of love

Angie xxx

 

 

 

It is the 1st December tomorrow and almost 8 months since I was diagnosed with Motor Neurone Disease.  I can’t believe how fast this year is going.  I’m surprised that I am still fighting this cruel disease, not that I am a little trooper.  I never was much of a fighter when I was young.  I have to admit that Christmas and New Year this year are going to be incredibly difficult because of the speech and swallowing difficulties.

I have been asked what my emotional lability triggers are just recently and they are:

Food, walking and talking.

A bit of a strange trio of triggers that set me off either laughing uncontrollably or crying buckets of tears.  I was always an emotional eater, hence why I had a weight problem pretty much all my life.  I would eat to mask the emotions, especially depression, and now food or the difficulties I have eating even the mashed up and softest of food is a trigger for my emotional lability.  It is because I miss eating what I refer to as “normal” food.  I am now on a diet that rivals a baby being weaned from milk and my diet seems to be reverting back to the baby food diet.  Christmas was always one of my favourite times of the year to have a huge feast, I can’t say I will be enjoying my food this year not now I can’t eat normal food or all my favourites that I used to love.

It is just one part of accepting that things are so different for me now and I have to work on that acceptance.

Talking is another trigger for my emotional lability, although because I have difficulty talking now, it tends to be crying through the sheer frustration of not being able to join in with a conversation like I used to do or even just chatting while I was out walking my beloved Oscar and then there’s walking.  I can manage to walk around the house but it takes all my energy to even walk to the end of the street now, let alone do a five mile walk which I did just days before the diagnosis.  It also triggers the emotional lability in that I miss walking my beloved Oscar, my pug who has been my constant companion for nine and half years now.  I used to walk him for an hour every single day, even when I couldn’t be bothered to walk him (just through pure laziness) once we were out, I was fine and we would meet other dog walkers in the park where I would get chatting to them and sometimes that hour would turn into two hours. He helped me cope after I had a breakdown and a battle with depression.  It was because of Oscar and my family that I managed to get out of the house and then I went to College which finally resulted in me gaining my degree in 2013.

I miss these three basics things so much that it is hard for me to feel positive about Christmas and the New Year this year.  All I wish for is a cure for this terrible disease and I would do anything to make that possible.  I’m not overly religious but I would pray to anyone for a cure right now and to be able to go back to being the old me.

We are coping with any changes on a day to day basis, it is all we can do, just cope and deal with my MND daily.  Some days are better than others where I can manage to swallow my food better but on those days I struggle, I just use my PEG.  While I might not be looking forward to the festive season that doesn’t mean I won’t make an effort for those around me because I will, it is what I have always done since December 1993 after losing two stillbirth daughters that year.  I know that I will need a lot of understanding this Christmas but I will try to put a smile on my face and get through it as best I can.

All my love,

Angie xxx

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