This Is My Story – Living with MND/ALS

Hi My Name Is Anthony Bowley And i Have a Illness called MND/ALS (Motor Neurons Diease).

I’ve been living with this horrible disease for 10 Years Now And the Doctors on my diagnosis Only gave me 2-4 Years to Live and for some How im still here 10-Years late.

I Was Born On 3-11-1985 i was just like any other health baby i lived my childhood as any Normal kid would.  As i got to my teenage years i was so fit and healthy i did a lot of sports Football-Martial Arts- I Also used to work out alot (Gym) i was a keen Horse Rider Also Mountain Biking  Through the Cannock Chase-I was also a keen Motorbike Rider.   So i was a healthy lad i first noticed something was not right my right leg was really big much bigger than my left leg  I thought it was of a motorbike accident i had from the year before when i was 18-Years Old.  So I Go to the Doctors and start going through a lot of different tests and quite a shock when the Doc come back with my results and said “Mr Bowley you’re results are back and you’re right leg is healthy but it Seems you’re left leg has had aWasted Away” I was so SHOCKED.. So This is Where My Life Turned Upside Down I Was Still Able to work and move around at this point id just turned 19-Years Old At this point but for the past previous 3-Years I would complain about problems at work i would get tired and a few other things like id lift my arms and my sholder would give in briefly little did i  know it was my illness creeping in..

So The doc got me Referred to a specialist at Birmingham QE Hospital where Over The Next 2-Years i went through so much shite tests and examinations that was horrible Needles in all sorts of places and alot of other things and a lot of my time just lying in Hospital Beds. But over these 2-Years from 19-21-Years Old My Body Really started to get week.

I Woke Up On My 21st Birthday and had a Doctors Appointment So we get ready and go. At This Point i can bearly walk   but we get to the Hospital and the Doctor cae in and this is where i hear the dreaded words “Unfortunately Mr Bowley after all the tests ect we now have your results you have MND (Motor Neurons Diease)”(Yes Diogenesed on my 21st Birthday ) Could only happen to me To Be Honest i didn’t really take it in properly Was  a blur to be fair i suppose it was shock i was gutted and decided i was going to enjoy myself while i could. so i spent a lot of my time in spain at my uncles villa only flying back to attend hospital appointments..  Another Blow was At the Age of 22-Years Old Where i got type 1 Diabetes (I Know Just My Luck) but that added another obstacle where i have to check my suger levels around 6 times a day also have to control my suger levels with Insulin (Nova Mix) and can’t eat or drink a lot of stuff i liked which isn’t nice..

So as i say i spent time at my uncles as my body was wasting away. I Would use a Granny Scotter to get around the resort and i was quite popular around there as my uncles were well known around Roquetas De Mar, Spain Almeria As he owned A Popular Bar Where the whole resort new him so i was well looked after by everyone. I Remember i flew home for a hospital appointment and me ad my uncle was flying back to spain and the cabbin crew brought our meals and i was trying to eat and hold my knife and fork an i couldn’t get my food to my mouth and that was my first time i had to have someone feed me i just cryed my eyes out and that is where my arms stopped working it absolutely destroyed me.  But i tryed to carry on At this point life was getting tough i had limited movement and insuiln controlled diabetes.  So me and my uncle arranged a one last trip so we went to Egypt Sharmel Shake the Red Sea. Absolutely Amazing It was hard my legs were so week when sat down people had to lift me up to stand and i would slowly hobble around i would have this Egyptian Man Come to my room everyday and take me down to the beach where i spent most of my time Swimming in the Sea.  What can i say mind blowing one of the best experience of my life just swimming around with just sholes of fish ,Octopuses ,Eels,Sting ray the odd Shark but you name it it was in there. What an experience that was i will never forget that 2-Times we went my last holiday and i will always be thankfull for that will stick with me forever.

I Stopped seeing my friends from england i was Embarrassed and didn’t want people to see what i become a week frale person from a strong healthy man to something else which i didn’t like i couldn’t even look in a mirror and see who was looking back at me to be completely honest i hated my self and what i become So i covered my whole body in tattoos.   So From the age of 25-26 Years old i had to leave spain as now i had to use a wheel chair for long distances and to difficult for the plain bording ect so my time in spain where i loved to be was now over.

I started getting these blasting headaches when sleeping so ended up at stoke breathing unit and the tests started again i ended up on a Cpap Nippy-3 Machine which would help me take a good lung full of air which was AMAZING but also got rid of all the Carbon dioxide out of my head which stopped the headaches (So it was to much Carbon dioxide Building up in my brain Causing My Headaches ) Which i Use the Cpap Nippy-3    24/7 All the time Im Totaly Relient on it

so i locked myself away in my Bedroom playing my computer which was so difficult used to place my arms in a certain possition on the computer table i had special buttons all over the floor to press with my feet and of course i couldn’t type i had to use a special programme for it.. I only had the use of my middle finger on my left hand and index and middle finger on my right had so i could only just play World of Warcraft so spent my time on that and didn’t see anyone.

this is the point where I lost all my movement and was bedbound and needed 24 hour care I had a breathing Machine (Cpap Nippy-3) Insulin als a lot of other Medication that i had to take i had alot of pain medication and all sorts of other Medication stuff for Toilet ect the list goes on. Im also beeing hoisted out of bed into Wheele chair back to bed i always tryed to be positive and think im lucky in a way I’ve got the medication I’ve got the equipment  there is always someone else in a worse position than me. But still life is hard but not just me this impacts the whole family in different ways we are all affected by my illness  but try our best to be happy  but so hard to get the care i needed. I End up with a company Called Active Assistance And they Gave Me most stress and  make me really mad ive been with them for 5 years and been the worst 5 years of my life i told them the type of people i would like to look after me as its my life i would like someone i can relate to and get on with and have things in common with as i don’t want any old joe. but do they listen nope ive had people double doesing me with medication ,people in don’t even know what illness i got not trained to give my insulin kettamine meds don’t know nothing about my Cpap Nippy-3 Machine.  I had one man not even come introduce him self to me because i had dogs so he sat in the kitchen all night. I woke during the night with my door open and i was freezing so i was shouting “Carer” as i didn’t know his name after 30 mins of shouting my little 11 sister came down into my room and said “Are you okay i heard you shouting from upstairs” Covered me up closed the door turned my stuff off and gave me a drink (Bless Her) But because he never came or answered me she was to worried to go back to bed incase anything happened. Now a young girl should not have to have to worry about me.. also if my breathing pipe sliped off id be dead as it does slip of f.   So i Complained about it the next night they sent another man in who went to sleep and didn’t hear me calling him (Again FFS). Its just trouble all the time i have days uncovered and get no one in all the time five years with this company andnever had a full care team so i got them to employ my to other sisters for nights and my cousin luke for days also my friends sister if i never got them on id be dead now they bend over backwards to cover shifts but they still got their own lifes and familys to sort out and they also need a break but this company see them as my family and expect them to do everything but they do so much more than they should this company sucks so send people i specifically asked not to send just ignore what i want just a job to them but no fuck off this is my life you are fucking with send people that don’t know what my illness is not trained for medicated or insulin so what they expect me to find someone myself to do it its a awlful company but the sad thing is im stuck with them no one else to look after me so depressing 5-Years and still trying to sort my care even tryed making me go to a care home telling me i got no choice.  i was like fuck you surly ii have the right to live at home where i wantto bee and die at home in my own conforts of my own room? . but like i say im just another job to them aslong they get there money they dont give a fuck so from me to them heres a big fuck you.. (SORRY but has to be said).  Active Assistance FYou..

on to a positive note as i can only move my eyes i got a special computer called an Eyegaze which is all controlled by my eyes this is how im writing to you now. To be honest it gave me a new lease of life i can now control my tv my stereo lights also Facebook surf the Web Amazing bit of kit. It mad me think of some of my close friends that i ain’t seen in like 8 years so i bit the bullet and messaged a few of my close friends and was one of the best things i done these boys would do anything for me and i would for them i love them so mucch it was awesome to meet back up since thenwe done alot of things together football matches shoping even a night out on the town even a smoke around the house watching Ufc Boxing football some times i can be out of it due to my ketamine and other meds and they all make sure im okay so just looking forward to the summer because i get out i just stay in when its cold as i freezer lol.

Alot of people don’t relise some of the complications we have i had one operation for a suuper pubic catheter and my feeding peg put in horrible but the worst thing for me is the cronic pain its bad everyday is pain im on all sorts of pain meds i have ketamine every two hours because of the pain but the cannabis is really good for my pain which along with my kettamine gives me abit of relief from time to time considering doctors gave me 2-4 Years to live im doing well a lot of complications but im still here trying to be happy and positive.

Im not usually a talker thats not me i don’t like to moan or cry about things or complain about thing i usually bottle all my anger and fustrations up then explode but i  thought id give you a little insite of my life and how it is to live with MND.  If this dam care company can get me someone i like get on with would make my life so much more livable and not send the people they have been sending and consider my thoughts feelings and requests would make the end of my life much more happy Surly i should be able to end my life happy instead wanting to die surly im in titled to have that one small thing as if they care for me i want someone i like…   Thank you thats a small clip of my life obviously there a lot more i could of said but save that for another time  thanks again

Anthony Paul Bowley #MND/ALS

antj
#MND/ALS
Anthony and Sonny
im in the white top just as i was getting ill #MND/ALS
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MND Sufferer Writes lyrics About His Life Experiences

Hello, I am a MND ( Motorneurones Disease) sufferer, I’m completely bed bound, I am only able to move my head slightly and my eyes, And with my eyes I use a special program on my computer that enables me to control most of my needs with my eyes. During the video you will see me moving my eyes a considerable amount, And that’s just because I’m moving and opening things on my computer. I apologize for my speech, But as you can see I’m reliant on my CPAP machine to enable me to breathe 24/7.
During this video I will be doing a rap that for the first time in my life I’ve ever attempted, I only thought of doing this due to how bored I’ve become lately, And a few people who have heard it have

My Life On Paper

(**VERSE** **1**)
Luke.. As I walk my lONLEY path just feeling so ALONE, And i kNOW all i HAVE to do is just pick up my PHONE,
BUT Im so SCARED off hearing That theres knobody HOME, There is NOBODY Home, And i feeling so ALONE,

(**CHORUS**)
Tone Nobody been AROUND, Despite them Always Claiming to be AROUND, I can see all there mouths moving, YET i here no SOUND,
Im wondering WHY This lIFE, Got PASSED down to ME,
My life is like a PRISON, Will i ever be fREE ??
Oh WHY couldn’t i have a BODY, Just like his TO, I feel like an lion, But ONE trapped in a ZOO,
These are the just the cards that my misfortune got DELT, So let me scream out lOUD, So these feelings are FELT

(**VERSE** **2**)
It feels like yesterday we all used to all gang up and play,
With the group of My brothers from back in My DAYS,
My life was really Crazy, Hectic in every WAY, We would all sell some Drugs just trying and make some pay,
This is not where i saw my life ending up to be, Lying on this bed I Would give anything to be FREE, Dreading the loud screams from that Evil Banshee,
Could be bad News but i can’t Guarantee,

My head aint working like it used to before, It feels like my brain was squased and trampled All over the floor,
Maybe I got short-term memory loss could but I’m usure, I Don’t Recognise People The way i used to before,

I thought id live out my life in a town L.A, This was the land i thought id grow up and stay,
Smoking some Afgani, Some Kush, and and plenty of the Haze, Please light all of your blunts up, As if we was at a 420 PARADE,
So lets try and remember those good old days, I really do try Hard, But its a COMPLETE utta HAZE
My mind is a prison its a total maze, With a flash a loud bang it was all a daze,

With fire And the smoke the pain vanished after each toke,
I might say L.A but i could be from a small town near to stoke, now listen to the words that i have to say,
Because this could be the words on my very last day, I love you all ever ever so much, Even when im gone i will still stay intouch,
so when you look over your shoulder and i will be there, Theres NOT 1 Single reason to ever be scared,
I will watch over you All until the end of your days, So let me start this CHORUS again… and i will rephrase,
Spit one or two more verses about my darker days

(**CHORUS**)
Im wonderin why This life fell down on me,
My life is LIKE a prison will i ever be free ??
Oh WHY couldn’t I have a Body, Just like yours to.? i feel like a lion but one trapped in a zoo
These are just the cards that my misfortune got delt, So let me scream loud so these feelings are felt,
If you feel the same way that I do too, Please Just remember you can break out of your zoo

Im in so much pain, That My pain is feeling my pain and the funny thing is know one is to blame, This is the game that’s been handed down from God,
And he is the ONE who truly understood, But This is the life he has given to me, To try to be free without ever being free,
So this is the life That, I Am going to lead, So let me be the first to start, By planting This Wild seed,

where i can grow a tree for everyone to see,
on the White Cliffs of Dover, Overlooking The sea, I could let that ship sail, To where I wanted to be free,
but I always Seem to end up, Right back at This tree, Where people are still waiting, For me to fly and to Be,
Its Mad thinking about All this Now, That I Could Finally be set Free, Just like a bird i will open my wings and flee,
Back to the heavens where i will reside and be

My Mum and my Dad my life wasn’t so bad, I had a lot more Love than many other Kids had,
Hope you’re the same after this all, And not gone raving mad, And Please Just remember you Are the best mum and dad

So i would like to take this time, That i have got left, To thank each and everyone of you, With My very last breath,
So forget all the sadness, And enjoy a mad sesh.. And don’t think of that time, Where you have to dust off, You’re black Dress,
I don’t want to see any tears, Not One Over my death,
So enjoy the funerall Party, My God you all look your best, And please just try to remember, I will finally be at rest,
Back with the family the ones Whom once left, So You can now close the lid on my Big wooden chest, So please take This All in slow, And let It DIGEST,
I love you GUYS foreve ever GOOD BYE and GODBLESS

Please Check Out My You Tube Channel Operation Eskimo which i attempt to sing thank you for the support mey