Emma is not only a Mummy blogger, but someone I count myself as lucky to have as a friend.
Emma is learning to live with Motor Neurone Disease; a life-limiting and disabling disease, whilst being a Mummy to an awesome toddler!
Emma has an amazing positive outlook, and is eagerly adapting her house to try and maintain a ‘normal’ life. But funds have put a stop to this- she desperately wants a ramp; so she can watch her little girl play in the back garden, and a specialist bed so she can breathe, sleep and stay beside her husband.
Please read down to the bottom; I’ve put the link to her go fund me page.
It’s coming up to two years since symptom onset for me so I thought it might be ‘interesting’ (devastating) to see what two years of MND can do to the body and force myself to remember that I’m one of the lucky ones.
I first felt symptoms a couple of months, perhaps sooner, perhaps a little later, after giving birth to Veryan; it was certainly close enough for me to pass it off as some kind of nerve issue related to my C section.
* June 2017, I was clearly googling my symptoms as I remember telling friends that I most likely had BFS (benign twitching and nothing to worry about).
*August 2017 I started to ask Terry to do the poppers on V’s babygrows as my fingers weren’t strong enough.
*September 2017, it felt ‘odd’ going up stairs and by November I was using my arms on the railings to pull myself up.
* November 2017, it felt like I had a limp but it wasn’t visible. Walking down the slope to work felt dangerous, as if my left foot was slapping the ground and I might fall over my toes.
*January 2018, I remember asking Terry to do all of the active bits at Veryan’s first birthday party as I wanted to ‘sit back and take it all in’ whereas I was actually too weak to do it but didn’t realise. I found it difficult to walk for any length of time but it was unlike any kind of fatigue. It just…was. I think it was around this time that I noticed a problem with my breathing – as if I were heaving slightly when laying down. At work, I stopped using my office regularly as the walk to it was too hard; it was about 75 meters from the front doors.
*February 2018, it became difficult to turn a key, there wasn’t the right movement in my hand so I was doing it with my fist. I also noticed that it was getting strangely difficult to get in and out of the car. I remember asking colleagues to open water bottles for me and I was dropping my pens.
*March 2018, we went for a day out at The Wimpole Estate. My walking was visibly poor and I found things difficult. I was also finding it hard to wash my face in the morning as my right hand wasn’t working properly. When I was eating cereal there was a slightly odd movement of my jaw. I suddenly noticed I had visible muscle loss in my right hand and I asked for permission to use the lift at work as stairs were now too difficult.
*April 2018, constant, violent twitching spread to my arms. I was really struggling to walk and carry Veryan, I remember thinking I wasn’t going to make it to the car one day and almost asked a stranger to help.
*May 2018, diagnosed with limb onset MND. Can no longer go on tip toes, spread the fingers on my hands, walk heel to toe or get up from the floor.
*June 2018, began using a mobility scooter regularly as walking was too difficult.
*July 2018, first fall in the garden. My previously unaffected left hand wastes within the space of a month.
*August 2018, started using a wheeled walker when out and at home. Sitting in any chair/sofa became impossible. If I wanted to breathe then I needed to be sat on my walker or in my wheelchair. I’ve not sat on a sofa for the last 7 months.
*September 2018, I was barely sleeping as my oxygen levels were dipping uncomfortably – I started wearing a ventilator at night. I also began using a power wheelchair. Dressing myself began to be very difficult. I became no longer able to take care of things when visiting the toilet and began to rely on equipment to help me. Strangely, I notice that I can no longer clap as my compromised hands no longer fit together.
*October 2018, cooking and carrying anything, however small, began to be very difficult. My body needed all its energy to be able to breathe and walk. Feeding tube fitted prior to my diaphragm weakening any further. Now unable to hold Veryan while standing.
*December 2018, impossible to manage even the smallest step independently. Terry now dresses me.
*Jan 2019, now using my power wheelchair for all outdoor activities. Now unable to stand without holding on to something and completely unable to stand up straight.
*Feb 2019, starting to drop things a lot more often, my grip is weakening and my writing is becoming ‘wiggly’. I now have to wear my ventilator after eating my evening meal. Getting in to bed is starting to become really hard and I need assistance.
*March 2019, my days of going to the loo unaided are numbered. Pulling my trousers up feels like running a marathon as my hands just don’t work. Putting my hair in a ponytail is a death defying feat because I can not hold my arms up and breathe at the same time. I can only use a fork or a knife at one time as using both is exhausting. I also really need to think about buying myself some specialist cups as holding a drink is a two handed job.
So, that’s what MND can do in two years. There’s a million and one things in between but these things stick in my memory. There is very, very little I can do independently now. It’s not all doom and gloom, I just want people to understand the disease. Remember, I’m one of the lucky ones.
I said to a friend today that sometimes I feel like I’ve been given MND so I can show Veryan courage and strength and then other days I sob in the shower. Whatever kind of day it is, I’m very happy to be alive.
One thing I can do perfectly well…be a loving mother to this little beast. Sometimes we let her sit in her own deckchair and ‘drink tea’ and other times we lock her in the dog’s bed xx
Motherhood after IVF 