All the Fun of Saturday Night

Saturday I travelled up to London on my own, yes on my own as much as my mum hates that I love doing It because it’s just me and I can go at my own pace.

My mum dropped me off at the train station, I met the guy who had my name on the list because I am good disabled person and I pre-booked my assisted travel, when the train came he met me again I followed him he got the ramp and helped on to the train. 

Boom I was on my way to London 

On the train I plugged my iPod onto my ears for some journey tunes, but I didn’t listen to much because we arrived at Southampton station and 2 wheelchair guys got on now I have been a wheelchair user for like 8years and I have never been on a train with another wheelchair user let alone 2 of them. They were nice guys spent the whole train ride to London talking with them, chatting about all sorts Oliver and Toby by time we got to London we all agreed that we probably never see each other again or have 3 wheelchair guys on one train unless it was planed. 

Got off the train said my goodbyes to the guys and rolled to my next part, London underground 2 slow lifts later I was in the underground got on the first tube and headed for Wembley park station. About half an hour later I got off at Wembley park station and head for the lift, roll up to the lift and it said “sorry not in service” I thought what again I had this last time, so I rolled up to the first guy in a underground coat I could see and I explained, he said wait here there is a lift engineer coming down to take a look at it and maybe he can fix it to get you up stairs. I guess not because a few minutes he came back to me and said this is a bit long winded but we are going to take the next tube to the next station get off take the next tube back to be on a side with a working life, yes it was long winded but it was nice he came with me and I didn’t get his name but he was an 80’s child like myself so the extra tube ride’s we took together we spent talking music was fun and turns out the lift broke about an hour and a half before I got there because I asked him. 

Finally made it out of Wembley park station and I gave my mum a ring to say I was still alive and then I rolled to meet with my friends Deb and Rob. I met them and we headed off to find the wetherspoons for food, cheaper beer and more chatting. We found the wetherspoons so it was beer o’clock and they were showing the rugby games and man I tell you I have never been I a pub in England where so many people were cheering on Wales to win was crazy.  After beer, food and chatting it was time so we headed back for the gig.  

The Lounge Kittens, Skindred and Steel Panther now on paper that sounds like a weird mix but man it totally worked the gig was all the fun.

the only thing that pissed me off was the fact that the stewards had a go at me the amount of friends i had with me, when i booked the tickets i explained to them and they said it would be fine but on the day of the gig clearly wasn't but i soon saved the day and they loving mei went to go to the toilet and there was a fellow wheelchair guy in front of me and didn't have his radar keyand the stewards couldn't track one down for him i had mine boom just like Superman i saved the day. All 3 bands were great but Steel Panther really blew the roof off the place they were Ace.

After the gig my friend Rob pushed me back quickly to Wembley park station so I could jump on a tube back to Waterloo to get my 12:05 train home, I made it back to Waterloo underground and pushing like a bat out of hell because I didn’t know what the time was I took the first lift up and rolling to the 2^nd lift this drunk guy see’s me and goes dude it’s  Nikki Sixx

                                                            (I was dressed up like this)

and runs over and try’s to hug me and shit me mumbling away because I still have my tube ticket in my mouth, I was cheers dude but I gotta go catch my train I got the 2^nd lift and made my train with loads of time to spare.

Fucking train toilets suck I hate using them but I was desperate I had to go, and the toilet was broke so I got someone else is pee on me when I got off the train in Bournemouth I had like a 5minute wait and then I jumped on a bus and headed for home, I rolled in just before 3am I was so tired I went to sleep in my clothes, the next day I woke up smelling of beer and stale pee not pretty but All for the Love of Rock N Roll.

FA and the constant of change

In my last talk I done, I got asked 2 questions 1. How does having FA change your daily routine and how do you do things different to normal people and 2. How has it affected your social life?

I’ll get to question 2 later, let me just say I gave the short version answers because I was I had a time I had to stick too, but this my blog so I can go into it with more detail. 

Since 15 when I was diagnosed with FA (Friedreich's Ataxia) the hardest thing to come to terms with is the constant of change, I mean I remember a time where I walked to the toilet like a normal person pulled my pants down done my business and walked away. Yeah okay it was a long time ago and yeah I miss those days but only because it was easier and a lot quicker. 

I am 27 now and a lot has changed most of all is time; everything just takes a lot longer now a days.

Here are some examples of change I gave them

When I wake up I have to use a transfer bored to help me get out of bed.

A few years back my transfers were redeemed as the evel knievel of transfers by OT I use to just jump and hope for the best, most times it work but 9 out 10 I’d miss my target.

More change but that one is more change to benefit me, and now I’ve had my feet done I have more control over my transfers. 

Shower chairs, pee bottles, losing the ability to walk, my speech getting worse.

Right time to share a story

We are in the year 2015 you would like most places would have disabled toilets you would think so but a lot them don’t so I invested in a pee bottle (and because I can no longer pull up my own trousers when I am in m wheelchair more change) I only use it when I’m out and last summer my friends Deb and Rob came down to say with me for a few days, and we ended up in my local wetherspoons pub getting drunk. We all know what happens when you drink you go to toilet and you pee a lot, so anyway I’ve gone off to the toilet and yeah I was some time doing my business I had a lot of pee to come out so we had this couple on the table in front of us and they kept turning to my friends and saying oh you friend has been awhile is he okay? Turns out the old man was disabled and he needed the toilet (to be fair tho if we were on the x factor of disabled I’d win that shit hands down) I think he was a bit of a faker, anyway what he did was not cool he came and opened the door luckily I had finished but my Johnson was still out and he stood there with the door open and went how long are you going to be? Man I felt like slapping him and going fuck where’s the law saying how much time you have pee to in... He was a dick.

To sum it all up I do everything differently to normal people, but you know what I wouldn’t change it because without it I wouldn’t be the person I am today.

2. How has it affected your social life?  

I have covered this before; people who read my blog or follow me on facebook/twitter see I do a lot of gigs, a few nights out, festivals wheelchair rugby and even my talks for Bournemouth University.

All this has come with time 

I have never what you would call a social butterfly I had a few friends at school and when the FA bomb was dropped on me I pretended like nothing was going on I was in denial.  A couple of them knew but not many and then the last day of school comes and you and your friends part ways they are of making plans for future and your stay here thinking fuck by time I’m 18 I’m going be in a wheelchair. So you in role yourself in some collage computers classes because OT’s and mum say you need to do something also  because you gave on school and left with rubbish GCSE’s. You do all this without making any friends because you have no self confidence and you think everybody thinks you’re a weirdo. And then 18 to 21 comes and what friends you have left are done the town drinking  and your sat in your wheelchair in your room playing Xbox because your still not ready to face the world.  I use to spend a lot of time looking at other people and i would think If I could be like that,
I would give anything
Just to live one day, in those shoes
If I could be like that,
what would I do,
What would I do

I just wanted to be anyone but me (that’s a thing of the past now as I just want to be me, this is who I am I’m Justin Scrimaglia and I have Friedreich's Ataxia)

I use to be a bit of a master back then of putting on a brave happy fake face, but on the inside it was my own personal hell which is probably way I fell in love with Rock N Roll and Metal music probably because of how I was feeling at the time, but to me it felt like home.  I found a place where I belong, the music really helped me out as I didn’t speak to people about how I was feeling , so if I was feeling angry I would  put on some Slipknot or something heavy and it would just help.  My very first gig I went to was Motorhead, super heavy and a great night.

It wasn’t till I was 21/24 that I became really comfortable with FA. And now I can talk open and freely to anybody it, how this happened was one day out of the blue I picked up a copy of Ataxia UK magazine which my mum has been subscribing to since we found out I had FA. And before this day I had never read it I’ve flicked through old mags and had my mum and Nan show me things, but this was the first time I sat down probably and read it for myself.  And it had this guys story in it I forget his name but I remember reading his story and it just spoke volumes to me, I was like this is how I want to live my life. I wish I could remember his name and meet him as I would shake his hand and thank him for changing my life. I remember it ending with so you have FA but there is life after finding out you have FA. So after that it was big wake up call for me and I started reading more of Ataxia UK and I started reading about people with FA training to become doctors and things and it’s was like ‘wow some hope’.

After I had my life changing experience I decided to get a tattoo to complete the journey. I have a left sleeve tattoo which is a phoenix starting  at the top of  my arm and then going down my arm and joining the words ‘Family’ which I have inked on the inside of my forearm, I also have 5 cherry blossoms. It’s a Japanese style sleeve so it’s big, bright and very colourful. It was done by the amazing Emma Garrard right here in Bournemouth, she is a very talented tattoo artist. So the reason behind my tattoo of a phoenix is that it signifies my new life by arising from the ashes of its predecessor, so I got a phoenix to represent my old life ending and my new life just beginning. The words Family and the 5 cherry blossoms, are there for my Family who have stood by me throughout all my ups and downs in life.

Now a day I just  don’t worry what other people think of me, if they like me then great if they  don’t oh well their lose and plus when I’m on a night I turn into a rock star because I am usually the only wheelchair person out and most people want to talk to the guy in the wheelchair.

If I can give a little bit of advice to a person recently diagnosed with FA just hang in there it takes time there is no set time to how long it with take as long as you need as long as you have some will to fight that’s why I am a big believer in where there is a will, there is a way.

The Journey To My Right Foot

It has occurred to me that I have never done a post of the story of my right foot. I know I have talked about it and done a video, but this time the whole story written and with pictures (Now if you are if you faint hearted in anyway, maybe Stop Reading Now) Here is a link to the video version https://www.youtube.com/watch?v=j0V1NLGX98s&hd=1

Okay here we go

The story of my right foot 

 I went into Bournemouth Hospital on the 22^nd of August 2012 and they gave me the choice of what foot to have operated on first, as I am left handed so my left side is more dominant I chose the right foot.  The operation went fine but what they didn’t take into consideration was, because my foot had been in that horrible position for so long my skin had lost its stretchiness so they had to cut it off and leave the wound open. (You’ll see in the pictures soon)

I have what is known as a friedreich’s foot (High plantar arches pes cavus deformity of the foot) I don’t walk anymore but I kept rolling over on my ankles when I was transferring and I was getting pain in the balls of my feet. They were worried that I would but the skin open and get infections, so it was time to get surgery which I was put between a rock and a hard place. Because I was told that if the surgery didn’t work I may have to have both legs amputated from the knee, and if I didn’t have the surgery I run the risk of them getting worse and maybe losing them one day.

The surgery I had done was 

They stretched my Achilles tendon, took bone and ligaments of my foot replaced them with lots of metal work, and then they fused my ankle and foot to a 90% angel.

 The original plan was to have one foot done at a time, so have one foot done on the 22^nd and go home for 2weeks and go back to have the left foot done.

The new plan

After surgery I awoke to all this news, and the new plan now was I was going to wait in Bournemouth Hospital until a bed became available in Salisbury Hospital where I was going to be having a skin graft.

I was on a vac machine, it was basically keeping my foot alive sucking all the bad blood out of my open wound. 

                                                               (this is a vac machine)

The next night

You see during the day Bournemouth Hospital was great, but at night it turned into Bangkok, Thailand the night staff struggled to speak English, you were better off asking the cleaning team for help. One night my vac machine started beeping, so I called for a nurse and a nurse and was like can I help? I was like this machine is beeping and her reply was oh right well I’m not qualified to touch this machine, so she went to find someone that was qualified, there was only one nurse that night and she was in a different part of the Hospital it took 40minutes for her to get to me and when she arrived at me bed she went it’s full and needs changing. That nurse done her thing and it stopped beeping, later that night it started beeping again (I thought to myself it can’t full again) so again I pushed the button for a nurse one came and said “how can I help” I said it’s beeping again, she said I’ll be right back she came back and said I’m going to switch it off I looked her and said I don’t think you should do that but hey I’m just the patient, I’m not a Doctor she went ahead and switched the machine off. 3 times that night I woke up with me leg heavily bleeding (My bed looked like a scene from Texas Chainsaw Massacre and of course they had to keep changing my bedding) the just kept wrapping my leg with more bandages so come the morning my leg looked like the leg of the stay puft marshmallows from Ghostbusters.

My consultant was not happy when she heard the tale of what went down, when they came to change the dressing on my leg I remember that day clearly because my  good friend and tattoo artist Emma Garrard so they came to my bed on the ward and pulled the curtain round. In there was me, Emma and the main sister (who was an old timer, I was like I bet she’s seen some blood in her time) and she had 5 or 6 student nurses with her, which all of them left as they could not hack it.

To be honest it was pretty gory and I had a big blood clot, if I had my way I would have ran to but I can’t run. Anyway the sister didn’t do a good job of cleaning my foot up so my consultant came to finish the job and man was she livid she was not happy with care I was receiving on that ward, she told them they weren’t even fit to deal with bunions and bed sores and demanded that I was transferred to Poole Hospital. 

Going from Bournemouth Hospital to Poole Hospital

That was a fun day 

Because I was taking on a stretcher in an ambulance and just before I left Bournemouth Hospital they gave me some oramorph just in case I have any pain along the way.  It’s safe to the journey was pain free but because I had be laying down the whole way by I got to Poole Hospital I felt so sick, they rolled me to my room and I said I was going to be sick so the ambulance driver went to grab me a sick bowl but he was too late, I projectile vomited all over the walls it was like a scene from The Exorcist I missed my nurses by inches. I was led there still puking going I’m so sorry, and they were like don’t worry about it we’ve seen worse. 

After they cleaned me up they transferred me into my new Hospital bed, I had a lovely private room in Poole Hospital even had a sea view which was pretty. I went under again in Poole Hospital for a clean up on the foot, so caught short out the shit Bournemouth Hospital had cheated and every day I was having my dressing changed on my foot.

I even had a Birthday in Poole Hospital all my friends and family came to see me and yes we had shit loads of cake, so much I had to give it away which is not cool but better than binning it. On my Birthday my friend Joe asked what I was taking (medication) all I was taking was paracetamol and sometimes ibuprofen, hey I’ll hold my hands and say I’m a weak pussy when it comes to drugs but that night in Hospital I told them I was in pain and I took everything they offered me and that night in my room it wasn’t Michael Jordan in Space Jam it was me also I had the best sleep too I was out cold. 

I spent about a week in Poole Hospital and then a bed become available at Salisbury Hospital, so I packed my things and it was off to Hospital number 3 now Poole Hospital wouldn’t’ allow me to take the vac machine with me, as they put it “if I took it with me it would take about 6months for them to get it back” so my foot was bandaged up again and in an ambulance I went again at least this time I was sat up.

Hospital number 3 Salisbury Hospital

The plan was I was going to be having a skin graft but here’s what went down, so I got to Salisbury Hospital on a Friday got taking into private room to do hand over and meet the team who would be fixing my foot, after some time of explaining all of what I’ve been through I was left alone in my room. The room was small and not as nice as the one I had just come from in Poole Hospital but thought it will do anyway a guy came in and rolled me down to x-ray they x-rayed my right foot I never saw the pics but I got told I had a lot of metal put in my foot (I love Metal \m/ so that was cool with me) after that I was rolled back on to a ward, at first I was like oh crap I hate wards but man apart from my Birthday in Poole being on that ward was the best. 

Anyway back to the story so yeah Friday I got there and on the Monday I went under for them to look at my foot and do a skin graft; I was like yes we are getting somewhere and then I woke up Monday night and was back on a vac machine, and the surgeons came to see me and told me I had caught a big infection in my foot and they had to take it back down to just bone and metal. After that news I just wanted to scream fuck, the next few days I was being woken up at 5:35am to be pumped with tiger antibiotics to fight the infection.

Then new plan was they were going to do this big operation where they were going to take all stuff they needed out of my left thigh like a main artery and muscle and plum it up into my foot. So after I ran my course of tiger antibiotics the plan was to go under for one more clean and make sure the tiger antibiotics had worked so that day comes and I’m sat in bed watching the rest of ward eating breakfast and of course I can’t eat as I am waiting to go under, and then lunch comes and I’m waiting (belly rumbling I like fuck) then dinners comes now I’m just like FUUUUCK... It was about 10:30pm by time they got me down theatre.

Anyway the tiger antibiotics had worked so next they were going to this procedure where they were going to go into my groin and pump my full of dye and take x-ray pictures to see if my archery was good enough for my foot now this was a wired one as I was awake for this one, now usually when my mum watches stuff on tv like this I’m gone can’t handle it but when it’s happen to you I found myself fascinated by it all I kept trying to look, this lady surgeon put this gel cleaning stuff on my groin and it slipped off and  landed on my balls yes I was naked I was naked a lot in Hospital anyway man it brought a whole new meaning to "Great Balls Of Fire" (https://www.youtube.com/watch?v=b8wFBUF1ZWY&hd=1) she had to get the spray water and hose my balls oh man did we have a giggle about that.

Next step was to have the big operation which was going to be over 10hours, just like Ghostbusters we came, we saw and we kicked it’s ass https://www.youtube.com/watch?v=-xMGRA_FePw&hd=1 (well I was asleep haha) when I woke up I had all kinds of machines and wires coming out of me oh and guess what I had another vac machine. 

The big operation went great but I know had a hole on my thigh they couldn’t close, so a few days past and I went back under and finally had that skin graft done. 

                                                                    (my right foot now)

All of if it looks so much better now as it's all fully healed up.

So there it is folks the journey of my right foot, now I’ve never been a religious person but I fleet like I was been watched over by some higher power or my body is just a lot stronger than I think.

As you know I am a big Smallville fan and yes watched it in Hospital on E4 as they would show re-runs in Smallville they had Lana Lang and my special nurses who looked after my big operation in Salisbury Hospital was called Lara Tang close enough. 

I’d just like to say if anyone is reading this who may of looked after me during this journey thanks for putting up with me and thank you for watching over me, I mean that from the bottom of my heart.