MND Awareness Day
Today is Global MND Awareness Day. It deserves a whole week or Month but here we are and I appreciate you taking the time to read this post. It’s a bit of a cop out because if you follow me on Twitter you will have seen the content already but it is important that I share this again far and wide.
If you want to follow me on Twitter… Welcome.
Lock down has been a positive experience for me as I have had Becky and Freddie all to myself. I’m not certain Becky feels the same way as she has been non stop since Race Week and Freddie is starting to get a little crazy. It seems trivial to moan about anything with so many people dead but it has a huge affect on anyone with a terminal illness. Statistically I have about 2 years to live and I’m looking at spending 6 months, probably more, stuck inside my house, missing out on holidays, trips, adventures and making memories. I’m manageable at the moment, Becky can move me on her own to where I need to be. Next year will be a different story I suspect. Hoists, carers and breathing equipment are all on the horizon.
On that happy note I’ll direct you to read my tweets below.
It’s #ALSAwarenessMonth and each day I’ll try and share a little something with you.
I didn’t do the ice bucket challenge, knew and cared little about #ALS #MND. Then in May 2016 I got a letter from my GP saying I had suspected Monomelic Motor Neurone Disease. pic.twitter.com/FvJoxTehQY
— PainInTheALS (@PainInTheALS) May 2, 2020
There isn’t a straight forward diagnosis for #ALS #MND and many people wait many months, even years to be given the terrible news. Mine took 7 months, but I knew long before my consultant told me. It broke me. #ALSAwarenessMonth
— PainInTheALS (@PainInTheALS) May 3, 2020
Muscle weakness/loss is one of the key indicators used to diagnose #MND. For me it was a twitch in my shoulder that wouldn’t go. My chiro noticed the weakness and sent me to my GP. I still twitch but now it’s all over my body. All day and night. Vid Oct 16 #ALSAwarenessMonth pic.twitter.com/J40jWuSS0G
— PainInTheALS (@PainInTheALS) May 4, 2020
Of all the things #MND #ALS has taken from me;
Use of my Arms
Ability to walk
Ability to eat
Unable to sleep more than 3 hours straight
It’s the ability to speak that I miss most. #ALSAwarenessMonth
— PainInTheALS (@PainInTheALS) May 5, 2020
Without being too dramatic, for anyone with #ALS #MND contracting #COVID19 is pretty much a death sentence. I already have my Will and PofA in place. I’ve been shielding for 54 days and on day 1 I wrote my final wishes and plans for my funeral. #ALSAwarenessMonth pic.twitter.com/qk7H07tdsC
— PainInTheALS (@PainInTheALS) May 6, 2020
I have a lot to be thankful to the #NHS for. I have 3 monthly clinics at which I see my Consultant, Specialist MND nurse, Occupational therapist. In addition to Speech, Nutrition, Communication, Palliative and Physio. All at no extra cost. Thank you all. #ALSAwarenessMonth pic.twitter.com/pJysQVy722
— PainInTheALS (@PainInTheALS) May 7, 2020
On that fateful day in Oct 2016, the first person I told was my father and brother. Then my closest friends, then my mum. Then we parked it for 6 mths to get used to it. During that time I built a blog to share my journey. https://t.co/4Xr2GwkvxB
— PainInTheALS (@PainInTheALS) May 9, 2020
The amount of #NHS equipment I have been given is phenomenal.
My top of the range wheelchair.
Cough Assist machine.
Non Invasive Breathing machine.
Communication tablet. #ALSAwarenessMonth pic.twitter.com/jo1i5MmLki
— PainInTheALS (@PainInTheALS) May 11, 2020
There is no cure for #MND #ALS
There is only 1 ‘approved’ drug (Rilluzole) which they think prolongs your life by 2 to 3 months.
When I was diagnosed I was told I had between 3 to 6 years to live. To get my things in order and make the most of my time left. #ALSAwarenessMonth pic.twitter.com/q15BLDAAgq
— PainInTheALS (@PainInTheALS) May 12, 2020
Golf courses are open so I have to post about my favourite past time. I’ve always played golf and finally got to 18 handicap b4 lack of grip forced me to give in. I’m happy that my final round was with my father, and I got to play abroad with my best friends. #ALSAwarenessMonth pic.twitter.com/v3peIyJcOJ
— PainInTheALS (@PainInTheALS) May 13, 2020
It’s not uncommon for people with #MND and #ALS to suffer with insomnia, Lord knows we have plenty on our minds. Once I’m in position I’m stuck until the morning unless I wake Becky to move me. Discomfort, pain, panic, saliva. Oh the joys of life MND. #alsawarenessmonth pic.twitter.com/kDTv5DIiU1
— PainInTheALS (@PainInTheALS) May 17, 2020
Weight is a big issue for warriors with #MND #ALS. You need to keep it on because the disease takes it away. When I was diagnosed I weighed 13st 4lbs, yesterday I weighed 10st 2. There is nothing left of my shoulder muscles which is is why I can’t use my arms. #ALSAwarenessMonth pic.twitter.com/OjBj2n6tQ9
— PainInTheALS (@PainInTheALS) May 19, 2020
I’m now totally #PEG fed. That’s a tube that lets you inject food and medication directly in to the stomach. I’m a little paranoid about blockages so I stick to pre prepared #Fortisip ‘shakes’. 2000 calories a day keeps my weight stable and me alive. #ALSAwarenessMonth pic.twitter.com/hKKh37XL47
— PainInTheALS (@PainInTheALS) May 22, 2020
Many with #ALS #MND will struggle with saliva. Too much of it. Too thick. Too runny. I struggle to swallow and have little control over whether fluid or saliva goes to my stomach or my lungs. Of all my body failures it’s the one that pisses Becky off the most. #ALSAwarenessMonth pic.twitter.com/jXDQKyaSgV
— PainInTheALS (@PainInTheALS) May 23, 2020
The thing I hate most about my morning and bedtime routine is brushing my teeth. It’s hard for Becky. Added to that I can’t breathe with my mouth open and the moment any fluid goes down my throat – I gag. As a result I never feel really clean. #ALSAwarenessMonth pic.twitter.com/yL3GChAfK3
— PainInTheALS (@PainInTheALS) May 26, 2020
I was going to to post something about my daily battle with #MND #ALS but I came across this video and it stopped me in my tracks. Such bravery, such dignity. RIP#ALSAwarenessMonth https://t.co/588GzfJGcJ
— PainInTheALS (@PainInTheALS) May 28, 2020
I am incredibly lucky to have a large group of family and friends who normally provide care and support. We have a Whatsapp group called CrispyCare where they will say if they are available to hang out, feed me and take me for a wee. I miss them all. #alsawarenessmonth pic.twitter.com/GNcTtnBtsQ
— PainInTheALS (@PainInTheALS) May 30, 2020
Apparently as someone who is shielding I am allowed out tomorrow. Unlike a number of sheeple I am capable of using my common sense and do not feel the need to ‘do a Dominic’ nor sit on a crowded beach all day.
I came to this decision on my without needing the Gov’t to tell me. pic.twitter.com/U4WZkkhth8
— PainInTheALS (@PainInTheALS) May 31, 2020
My final tweet of #ALSAwarenessMonth is dedicated to my wife Becky. She bears the brunt of all my frustration, lives with the ugly side of MND yet steps up every day to look after and provide for our family, when all she wants is for someone else to make a her a cup of tea. pic.twitter.com/agB596j4Td
— PainInTheALS (@PainInTheALS) May 31, 2020