A Year of Not So Terrible Palsy

Happy New Year and happy 1st birthday to Not So Terrible Palsy! I cannot believe that I have been blogging for a year and what an amazing year it’s been, I for one did not think that a year on people would still be reading my blog I’m incredibly thankful. So, I thought I would reflect on 2019 and discuss how much of an impact it has had on my future career…

At the start of the year I knew that I wanted to do more with my disability which is why I started my blog, but I did not think that 2019 would be as influential as it has on me. During 2019 I learnt a lot about myself, my disability and of course occupational therapy and in which my views on these three things have all changed as the link is becoming more apparent making me think more about how I want my future to look like. As mentioned one thing that has changed this year is how I see myself as a disabled individual and I feel like during 2019 I realised that not only is my disability a strength but actually my disability is the best part of me and this is all thanks to CP Teens UK. In January 2019 I went to my first social event with CP Teens and it made me realise just how much I’ve been missing out on. I’ve always been a bit hesitant about going to events with other disabled people as when I was younger, I didn’t want to be seen as ‘disabled’. Which I know seems stupid now; that’s how I saw it! However, I had a really great time at bowling and after this event, I was determined not to miss out again.

In February I met Lost Voice Guy at one of his incredible show! It was a brilliant moment for me because when explaining who I was to Lee he replied “I know who you are” this was really important to me as a few weeks before this Lee had also commented on my blog saying that he loved the name and couldn’t wait to read more. At the time my blog had only been around for a month so to get the response was something special.

February was also great for another reason as Tommy was born! Tommy has taught our family so much in which I have mentioned in my previous blogs No Longer Being the Only Disabled Member of the Family and Down’s Syndrome Awareness Month 2019. I can’t believe Tommy’s not even been in our lives for a year, it’s crazy! Tommy, we love you so much, and hats off to Tommy’s Mummy, Amanda for being a great advocate for Down’s Syndrome awareness during 2019 I can’t wait to see what 2020 has in store for you.

March, (in case you haven’t realised we’re going to be here a while). For Cerebral Palsy awareness month in 2019, I went all out with 5 posts in a month- I loved it. The challenges Ruby’s Makeup, Cutting the Grass, Attempting to Play Darts and Cooking Dinner were so great I enjoyed doing them (and dragging my whole family into it). They all went down really well I even received messages from people saying how much they loved them and couldn’t wait to read another challenge the following week- I was really taken back by the response I received from these challenges! I hope to bring them back soon!

From the end of March to the beginning of May I learnt a lot about my personal and professional development as I undertook my first occupational therapy placement in paediatrics. I absolutely loved this first placement and was very thankful for the opportunities I got given through this placement, I knew right from the start that I wanted to have a paediatric placement so I feel very lucky that this was my first placement and could see myself working in paediatrics in the future! During my time on placement, I delivered my first ever presentation about my blog and what an amazing experience it was I am truly thankful for this opportunity as without this I wouldn’t have found out about other opportunities such as the CountMeIn conference in June 2020. In which I got asked to be a keynote speaker, I am truly honoured and humbled to have been asked I am very much looking forward to going to this incredible event.

This placement will always be significant to me as my response from my presentation made me realise where I want my career to be heading, in which I discuss in my blog and Why I Study Occupational Therapy. So, thank you to all those who made this placement so significant and I look forward to working with you in 2020!

But of course, May doesn’t end there… I can’t forget about driving!

Yes, we all know because I bored you all to death about it in a super long blog post but in May I finally got my car! Getting my car has to be the highlight of the year as I’d been waiting so long and even now when I’m having driving lessons I’m still in disbelief that I’m where I am.

Looking back May was probably my favourite month of the year, from having the best time on placement to getting my car and of course, let’s not forget about the sponsored wobble with CP Teens…

At the sponsored wobble in May, I brought quite a big crew and we all loved it so much it was one of the best days of the year, my family love this charity so much and will go to great lengths to help raise money for it as long as we can.

Sticking with CP Teens at the end of May I got asked to be an ambassador in which I whole-heartedly said yes to and had my first blog post for them published in June! This has got to be one of my best achievements this year I have been wanting to become an ambassador for CP Teens for a while and I did not think that I would become one in 2019. But here we are 6 months in, and I’m absolutely loving it! CP Teens has been a big part of my life this year and I honestly believe that they have helped me to become the person I am today who isn’t fazed by her disability in the slightest.

In July I enjoyed some time off to really work on Not So Terrible Palsy- due to being a full-time student I can’t dedicate as much time to my blog as I would like so it was nice to have the time to work on it and to finally get it to the way I wanted it to look. As a new blogger, this was my opportunity to get my name out there and so I did and had a story featured on The Mighty and also had a few of my blogs published on The Occupational Therapy Hub.

However, over the summer I did enjoy some time to myself! In August I went on holiday and took my new electric wheelchair with me for the first time which was an experience that I was very nervous about; it turned out to be great, I felt so much more independent- no looking back now, my electric wheelchair best be prepared to face more adventures. As well as catching up with friends over the summer I FINALLY had the pleasure of seeing my favourite artist Ed Sheeran, and what a night this was. I still can’t believe it’s happened I don’t want to sound corny, but it really was a dream come true!

As you can tell I like to be busy, so when September came around and it was time to go back to university, I was so ready!!! I love being back at uni- the course, the people just everything about it. I always get scared that I’ve not picked the right course and that I’m going to fall out with it but being back at university brings back all the warm feelings towards occupational therapy and I know that this is the perfect course for me. I have to thank university for being so supportive of my needs which I mentioned in my blog about Reflecting on My First Year at University. University is also very supportive of my blog and commitments outside of university and makes sure I have everything in place to get this balance right and I am very thankful for this. In fact, in 2020 I have a very exciting placement coming up in which I get to use NSTP as part of it- all will be revealed in February.

October, which means my favourite day of the year! World CP Day!!! I really do love this day so much and this year I decided to do another challenge in which I caught the bus in my wheelchair. Not only this the word was out, I could also finally tell everyone that I was going to be a keynote speaker I was so excited, I always wanted to announce this on World CP day so when I found out that I could I was so happy- perfect timing!

At the end of October through to mid-December, I was on my second occupational therapy placement, this was challenging but such a great experience, I really did learn a lot yet again about my personal and professional development as mentioned in my blog about Transitioning from a Service User to a Healthcare Professional. I’m so lucky to have had two wonderful placement experiences this year!

Of course, let’s not forget about one of the best nights of the year the CP Teens annual ball in November! What an incredible night it was, I will certainly be returning next year!

Once bottle green, always bottle green!

Christmas has been great, and I really have ended the year on a high note with the most beautiful family wedding congratulations Mr and Mrs Shaw!

So 2019…

31 posts on Not So Terrible Palsy.
Had my driving story featured on The Mighty.
Had 2 blogs featured on The Occupational Therapy Hub.
Became an ambassador and have written 4 blogs for CP Teens UK.
Completed 2 placements.
Got asked to be a keynote speaker!

What a year it’s been thank you for all your support I couldn’t have achieved any of this without it. I’m still taken back every time someone leaves a positive comment on my blog and says that they enjoy reading my content. So, as much as this blog is to say thank you for your support it’s also to say thank you for believing in me!

THANK YOU! I can’t wait for what is to come in 2020!

Georgia x
@georgiavine4213
@GeorgiaVineOT

Maintaining Braces with Cerebral Palsy

Hello as if we’re in September already! I decided that this week I would do my first throwback post, to my younger years, as I haven’t really talked about my childhood that much therefore, I thought I would start by telling you all about my braces. I’ve decided to tell you about my braces because this was a difficult period of my life- anyone who has had braces knows that they can be difficult at times, but when you add CP into the mix the level of difficulty increases.

So, the background story… Anyone who knows me knows that I never do simple and my situation with my braces wasn’t simple, to say the least as, more or less straight after I’d had my initial appointment to see if I needed braces I had my braces put on as I was classed as an “emergency case”! I was classed as an emergency case as my last tooth that was coming through wasn’t coming through in the correct position and it was, in fact, damaging my nerve. This meant that after I had my braces put on I had to have an operation to remove my last baby tooth and two more teeth (as my mouth was too small for all my teeth), then I had a gold chain put in to bring the tooth that was damaging my nerve down slowly into the correct position. Already this process was a lot complicated than anticipated I remember when I got told all this information and I come out of the room and turned to my mum and just said ‘Why me?’. I just felt like my life was complicated enough without this- which looking back is rather selfish of me, but my 13-year-old self didn’t have the same outlook on disability as I do now.

Having to wear braces never got me down; looking back now I probably would be able to take my situation on board a lot better. However, this still doesn’t mean that physically I would have found it easier because physically maintaining my braces caused a lot of issues. Due to my situation being complex I had to get my braces tightened more often meaning that I was in pain most of the time. It was also very hard to keep them clean independently, due to my CP I don’t have a lot of control over my mouth and tongue so when food gets stuck in my gum I must physically go to the bathroom and brush my teeth. Meaning that if this happened when eating in a restaurant it would leave me feeling a bit embarrassed, over the years (as this happens regardless of braces) I have developed techniques to subtly resolve the situation in my own way without people knowing. But, with braces, most issues were caused due to my lack of control; like I said my control with eating still causes me a lot of issues today but this is a whole other blog post and to be honest is probably something I’m not quite ready to be 100% open about.

I was very keen on making sure that my braces were always clean and I always did what the orthodontist told me but as said it was hard to do this independently and my parents did have to intervene a lot more than I would have liked. However, I did get into a routine. Overall, I had my braces on for 20 months, so I did get better and become more independent towards the end!

Photo by Pixabay on Pexels.com

Elastic bands are common with braces; in my case, they lasted 2 weeks before I had to call the emergency orthodontist on a bank holiday weekend! I’d struggled with the bands and was cautious that I’d end up doing damage, but I didn’t think I could somehow break the bar at the roof of my mouth and cause it to stick into my tongue. Let’s just say, I never wore elastic bands again after that incident.

As you can see having braces wasn’t the easiest 20 months of my life; I am happy with my teeth now, still annoying that this was all because of one tooth but it taught me a lot. It taught me that not every thing’s as easy as it looks at first however practice makes perfect (a clichè, I know) but, it’s true! Yeah, this was a very frustrating period and it would have been a lot easier if this situation wouldn’t have occurred but that’s life, unfortunately, this isn’t the first frustrating situation to occur and it won’t be the last. So, I might as well reflect on it and look at what’s it’s taught me rather than focusing the negatives, this situation is never ideal even for an able-bodied person, but worse things happen!

Thank you for reading,

Georgia
@georgiavine4213
@GeorgiaVineOT

Reflecting on My First Year at University

As previously mentioned, I have now finished my first year at university so, seen as I mention university a lot throughout my posts I thought I’d reflect on my first year to give you some insight on my experiences this past year. But first, I’d just like to say how I can’t believe that I am writing this blog already, well, I could have even written it a month ago! How scary is that? I still feel like a new student! Speaking of how fast time is going last week marked 6 months of Not So Terrible Palsy, now that has gone fast!

I’ve always known that I wanted to go to university from a young age and when I saw photos of my older cousin’s graduating I knew then, that, I wanted to wear my own gap and gown one day. So, when university finally came around in September 2018 although I was nervous, I was certainly more excited as it felt like I’d been waiting for the day to arrive ever since I saw my cousin’s graduation photos! I remember being sat in the lecture theatre thinking I can’t believe that I’m sat here and to be quite honest when I sat in a lecture theatre now, I’m still in disbelief.

However, as I said, there was still a lot of nerves and I still had a few worries as I’ve previously discussed when talking about my wheelchair and placement. I also had worries about making friends because even though I’m a very sociable person I knew that due to my circumstances, I wouldn’t be able to make every night out. But the biggest worry was would I be able to cope with the work? Would I actually be able to do a degree? Which I know seems dramatic; I still had to be real with myself and face reality even if that would be the case. However, this question didn’t come from my own doing this question came from the doctor at my occupational health appointment which I had to have to ensure that I was fit to go to university. I remember him asking me all these questions such as ‘’What would happen if a patient asks you to do something that you can’t do?’’ and to be fair I do have to be realistic and seriously consider which job I want to go into within occupational therapy but I was very distressed after this appointment. This was because I’d been getting so excited about September so when this appointment didn’t turn out how I thought it would turn out I was quite disheartened.

I knew that I was going to struggle a lot more than an able-bodied person; I just had to be more prepared. I remember how daunting my induction day was and to be honest, I didn’t have the greatest day and felt really overwhelmed but then that changed at the end of that day when the lecturer came up to me and said ”Georgia don’t worry we are going to prepare for the hard parts”. This conversation meant a lot to me and was probably the highlight of my day that day. Following this my now lecturers had arranged a meeting with my mum and myself to plan ahead and from this a lot of my worries were dealt with including a big one about not being able to do certain practical elements in which it was decided that before any practical lessons I would have a practice first on my own to save me some embarrassment. This was the perfect solution! For example, as part of my preparation for placement, I have to undertake mandatory training and as part of this, skills such as manual handling are required so, it was fair to say that I was pretty nervous starting the course off with something that I may not even be able to do. But my worries were completely taken care of as we’d come up with a plan to have a go at the manual handling by myself first which made me feel so much more at ease because I knew what I was expecting when the time came to do it alongside my peers. I still can’t thank my lecturers enough for doing this. I wasn’t the best at it but with a few practices, I was improving!

I also was really worried about the workload… Would I have enough energy to make sure that my work was up to standard? My course is all assignment based which works best for me as I’m certainly that person that crumbles under the pressure of exams; I was still worried about being able to write high-quality assignments. I guess everyone has this worry but as I mentioned for me it was also about being able to cope with the workload making sure that all my assignments had the enough amount of time spent on them as it can take me twice as long some days depending on energy levels. Now that I’ve submitted and received feedback from all of my assignments, I am pleased with the work I have done. Some assignments are better than others, so I need to work on this therefore I have been doing a bit of work on these skills during my time off whilst I have time because come September it’ll be harder. I mention this so often but I have to know my body and I know it will be hard to take extra classes in September that’s why I’m doing it now whilst I have the time to put all my energy into it!

My last worry was about living the ‘student life’ which I have mentioned a few times before. I was never worried about making friends one because I’m very sociable and can talk to anyone and two because the course was occupational therapy so, if people weren’t going to befriend me because I’m disabled, they should probably reconsider their degree. I made friends fine and I get along with everyone on the course I mean I don’t talk to everyone but not because we don’t get along but because that’s life. However, this still didn’t stop me worrying about trying to live to ‘student life’ knowing that I live a 20-minute car journey away from the rest of my friends. But as far I’m concerned this hasn’t affected me that much, to say it hasn’t affected me at all would be a lie as I’ve previously talked about; this isn’t because I don’t get invited.

Overall, I feel very fortunate to have had the most amazing first year of university which is full of memories from some great times both in and outside university. My worries a year ago now seem so small I will always worry about my work at university because that’s the person I am but apart from that everything else didn’t seem worth the stress. University will always be harder for me than an able-bodied person because that’s the way the world was designed but it still doesn’t stop me from loving it because I certainly love what I do. Roll on second year!

Thank you for reading,

Georgia
@georgiavine4213
@GeorgiaVineOT

My Driving Journey So Far

Welcome to my driving blog post, despite saying that I wasn’t going to write this post, 2 weeks later here I am… I’ve received a few comments saying that people would like to read this blog post as they find it very useful and insightful. Which made me think that, if I’d had read a blog post about someone’s driving experience when I was 15 then I would be a lot further in this journey. So, here it goes, put your seat belt on (pun intended) because this is quite a story!

When I started to plan for college at 16, I realised that what I’d always known was about to change, because my timetable wasn’t 8:30 am-3:00 pm every day so, therefore, my parents could no longer drop me off and pick me up. This meant that I would be getting a lot more taxis and at this time the thought of being in a taxi alone made me feel vulnerable. But then I had a thought, I thought I’ll start driving lessons soon and then in the second year I’ll be able to drive, which of course made me eager to start driving. So, 6 months before my 17th birthday I applied for my provisional license, my 16-year-old-self thought that it would be enough time to get the ball rolling, not knowing what was ahead.

The first hurdle- as previously discussed as a result of my Cerebral Palsy I have epilepsy, which didn’t make getting my provisional license easy, despite not having a seizure in 12 years. But, after filling out multiple forms, 3 months later my provisional license came. This process itself took a lot longer than anticipated and started to make me realise that this course was going to be more complex than expected but, it didn’t fully prepare me. As soon as my provisional license came, we started looking for a disabled driving instructor knowing that I’d probably need a little extra support. So, after another few months of phone calls, I finally had my first driving lesson 2 days after my 17th birthday. Again, we didn’t think it would take another 3 months on top of this, and had hoped that I would have had a few lessons by this point as with being disabled you can start at 16, (clearly something I didn’t know). But I didn’t mind, it felt right as I was starting around the same time as my peers and I was where I wanted to be.

My first lesson was meant to be 2 hours but after an hour I was on my way back home as we discovered that I needed further adaptions. The next stage was to go to a centre to be assessed so, my report came through from my driving lesson and a date was made to go to the assessment centre. I was waiting to go to the assessment centre for 5 months’, but I didn’t mind because this was over summer so, I could start over summer when I wasn’t at college meaning that I could have more lessons and speed up the process. Over this period, I was told to start revising for my theory test so I did, luckily I didn’t book anything before knowing the outcome of the assessment but I thought that if I was being told to put in for my theory then it couldn’t be much of a wait.

The day had finally arrived, I was going to the assessment centre and I thought that I could see light at the end of the tunnel. The day was a very long day, the assessment centre was quite a drive away as well but, I was prepared for a long day! So, the tests included trying different adaptations as well as having reading and cognitive test you name it, I had it, and as you can tell, it was quite a draining day so I slept most of the journey home. We’d concluded that I was too weak in my legs to be able to use the break and accelerator, so we explored alternative options one of them being a lighter steering wheel which had the break and accelerator attached to the wheel. So, this assessment was useful because from this we discovered that I couldn’t use my legs and that I was cognitively able to drive; we’d not found a way for me to drive. I came out of the assessment feeling deflated as this was the first time that I’d realised that I may never be able to drive. Side note, this assessment was carried out by an occupational therapist- just thought I’d mention it!

From this, I was then referred to have another assessment with a driving instructor, the wait for this assessment was only a month and during that time I was all ready to go on holiday and just forget about driving. Once again, the day came, but this time I wasn’t that excited as I didn’t want to get my hopes up for them to be demolished again. However, this assessment turned out to be the best one as we managed to find an adaptation that I was able to use- a year later and things were finally looking up. The adaptation I found was the tiller which, works a bit like the handlebars on a bike.

I was going to insert a video but the video I have is me using a different adaptation- I tried so many!

So, it was decided that the tiller would be the adaptation I was using! However, this meant more waiting! This was because at the time there was only 2 van’s in the country fitted with this adaptation for learner drivers, therefore, this meant that if I was to have this adaptation I would have to have my own vehicle adapted first before I learnt how to drive. Which resulted in more assessments to ensure that this was the right adaptation.

With a load more of phone calls, emails and letters another 6 months went by. The guy that came was lovely and he walked in and straight away said ”You’re going to get this adaptation, our number one priority is to get you driving.” – relief, I’d not waited another 6 months to get rejected. Just an update for those not counting, the total I’ve been waiting at this stage from applying for my provisional license is now 18 months. Now, it was time to hunt for cars, quite exciting, although my options were quite limited- this is because I needed a car big enough for a hoist for my electric wheelchair, however, a lot of the bigger cars require someone over 25 to drive them so, I had very few options.

A few months went by, and we’d picked a car and got the ball rolling, little did we know that our plans were about to get knocked back again… The plan was to get the car and then send it away for it to be adapted with the tiller; that plan didn’t take off as quickly as expected as the company were having trouble getting hold of the car so we had to wait until they could get hold of the car because as mentioned all the other suitable cars required the driver to be over 25. So, at this point I’m thinking I’ll just have to wait until I turn 25 before I can drive, thinking that, that was my only option. Fast forward 4 months and we finally have a car and the adaptation process begins! At this point, I was going back a forth a bit to have fittings. Once again, the car took a lot longer to be adapted than we thought, but it had to be perfect even if that put another 4 months on!

During this time, I decided that it was time to do my theory- good job I didn’t do it 2 years ago when I got told to! So now that my theory was done, I was just eager to start driving lessons, but there was nothing I could do apart from wait – I’d played my part at this stage.

We are now up to date 34 months later! I finally have my car and have started my driving lessons! This unexpected battle (which is the phrase that I often use) has taught me a lot and even though I’ve spent the majority of these 3 years being very stressed and frustrated with the process this has been a massive learning kerb. My life is always going to be full of unexpected battles it’s just part of CP, and even though this is frustrating it only makes the result more worthwhile. After all this waiting I’d be lying if I said I that I don’t want it to all be over and to pass my test. But doesn’t everyone? Driving will be great for me as it’ll give me much more independence as it doesn’t just allow me to go to place’s, but it allows to go to places alone because then I can go in my chair! So, it will be worth it, in the end, but at least now I can wholeheartedly say that I can see the light at the end of the tunnel!

There have been so many people involved in this journey that I would like to thank! I would also like to thank my parents for literally spending days on the phone because if it wasn’t for their hard work I wouldn’t be at this stage!

I’ve previously discovered that you can apply for your provisional license from the age of 15 and 9 months so if you’re coming up for this age get applying! I wish I’d have known that!


Thank you for reading,

Georgia
@georgiavine4213
@GeorgiaVineOT