A day to raise awareness of a neurological condition that they think I have had my entire life.
A condition they generally think of as the love child between MS and Parkinsons.
A condition that is the reason I now drink from a bottle (mum witnessed this reason first hand the other day as I lost my balance, flung my arms out accidentally throwing my bottle into the air and over the back of the sofa before it landed on the floor. Can you imagine the mess if it had been an open glass?)
I remembered last night a cousin of a cousin spending an hour trying to teach me to catch when I was about 9 but that ability after an hour of trying to catch soon left me. At school I was incredibly uncoordinated dreading P.E unable to hit or catch a rounders ball, play tennis, struggle with hockey and completely and utterly unable to balance on the balance beam during gym.
However whilst ataxia is a daily struggle trying to stay upright and balanced and we don’t know what the future holds I carry on and am doing some things I never thought possible (Giraffe Manor, Alaska etc))
As my type of ataxia is so rare we don’t know how it will progress
Currently I slur my words, choke on nothing as well as food and drink, can’t balance or co-ordinate my walking or even attempt to skip, run etc.
One of my most frustrating symptoms is the ability to not “find” the word I want to say resulting in me saying “goodbye” when I mean “hello”, calling polar bears, snolar pears for a month or just getting really angry searching for the word in my mind.
I currently don’t have constant tremouring or shaking of my body, the inability to walk at all, dizziness or uncontrolled eye movements (although I used to).
So we don’t know what the future will hold but with my doggy by my side as well as friends and family I shall carry on for the time being.
I blogged yesterday about how I had found the accessibility so far in Canada and I touched on the amazing staff on the Rocky Mountaineer who took me up and down in the elevator for breakfast and lunch as well as bathroom breaks.I wanted to introduce you to our amazing hosts who really have gone above and beyond to help me.
First up is Aimee
She and the others have really been amazing but she does definitely stand out in her thoughtfulness (she also laughs at dad’s jokes so we don’t have to which is perfect for the rest of us.
Second is Kyle
Along with Aimee, Kyle spends a lot of time in the dining cart helping keep us fed and watered (wined in mum and dad’s case) but again he’s been so helpful and whenever I got brought down for food early he and Chase would always point out things of interest so I didn’t miss out.
Next up is Chelsea
Chelsea has provided us with snacks, drinks, facts as well as keeping morale up during the waits. Again she laughs at dad’s jokes and humors him.
Finally is Darren
As a South African I loved him from the start even if he has lost his S.A accent. Again he provided us with drinks, snacks and informative facts along the 2 day journey.
All 4 of these amazing people have been so helpful and put me at ease with nothing being too much trouble, resulting in me enjoying the trip rather than worrying.So to them and all the Rocky Mountaineer staff all I can say is thank you for a memorable trip and helping make a rare girls dreams come true.
I hear a lot of travel horror stories from people with impairments and disabilities so having been in Canada a few days so far I thought Id write about my experience.
We arrived at Heathrow terminal 5 on Tuesday and checked in with no problem and i got to stay in Wilbur (wheelchair). We did unfortunately encounter a complete jobsworth at security who has an issue with my immunoglobulin but his manager was brilliant and soon we were through security and after a bit of chilling we made our way to our gate to be ready to board. On leaving our seating ready to board dad forgot my immunoglobulin but luckily the other passengers yelled at him. That was the last time he was in charge of it!!
I was able to stay in Wilbur until the plane door and the air hostesses etc were so helpful it was lovely. They stored the feet of my wheelchair and immunoglobulin in a cupboard and Wilbur was taken to the hold to be returned to the plane entrance on landing.When we landed the air hostesses told me to stay seated and they would let me know when Wilbur was waiting for me so I didn’t have to stand for long and we got to use the express security line as I was in the chair.
Having flown into Calgary we drove to Banff and our hotel the Fairmont Banff Springs. Brilliant hotel with ramps instead of steps in a lot of places but I still had a few issues I will be writing to then about.Neither the bar or the check in desks or concierge desks had any lower wheelchair user parts to them so they were far above my head, if I had had to sign something I couldn’t have.
In the bedroom they had made up the sofa bed for some reason so my wheelchair could not get past so we had to put it away which wasn’t too big an issue but it was half past midnight at this time. I’m lucky in that I can still walk short distances but those who cannot leave their chairs would have been unable to get past or transfer to the bed which was really high.
The bathroom had one rail by the loo and two in the shower. Reception provided me with a shower chair when asked but I still struggled with the lack of rails and the shower curtain did not reach the floor so the floor of the bathroom got wet and slippery so I used a spare towel to help me get from the shower back to the bedroomThursday morning we were booked to board the Rocky Mountaineer and as most travellers in wheelchairs will tell you I was apprehensive but I really needn’t have been.They had a lift to get me onto the train and once I was they had another lift to get me up and down to the top deck. As breakfast and lunch was downstairs I used this lift several times and I have to say it was incredible service.
Nothing was too much trouble for the lovely staff who helped me and I never felt like an inconvenience needing assistance like other places and people can make you feel.
It’s only been a few days but the service for those with Mobility Impairments in North America seems better in so many ways than in UK but we shall see if that continues.
So everyone is talking bout the death of the high street and as much as I try to shop in my local stores I am a big user of Amazon for several reasons.
Yes it’s quick and easy and with Amazon Prime I can get most items delivered the next day, however the main reason I use it is the inaccessibility of so many shops. Steps everywhere is the first and biggest prevention and is a prohibitor not just for those using a wheelchair or mobility scooter but those who still walk with sticks and crutches but find steps a big problem.
So many high street shops (mainly independants) have at least one step at the entrance which immediately means I can’t even consider going in to them. This inaccesibility leads to me ordering online instead or going to a shop which I can get into.
At least these shops identify to me quickly they are not suitable for me to go into even if they are missing out on my business.
Worse than this though is the shops that make you think they are accessible but once you enter then you realise they aren’t and even trying to get out you know it’s going to be difficult often resulting in knocking into items etc.
For me the worst experience of this was in an H&M where there was so little gap between the rails that I couldn’t look at any of the clothes and on trying to leave, my wheelchair sent many items of clothing to the floor.
Shops nowadays also try and fill every bit of floor space with stock so it may look accessible until you are in there and the end of a shelf which you’ve identified as a perfect turning spot has a load of extra stock making it completely impossible to get out.
Payment tills are also a problem as this is when shops try to upsell things you don’t really need. This is fine but means there is limited room for wheelchairs and scooters to get past and if there is a customer between the til I need to get to and me then all hope is lost as there is rarely enough room.
This post if by no means meant to be a moan but an explanation as to why so many of us with mobility issues do so much of our shopping online, it stops immense worry and inability to access shops.
When I was diagnosed with Ataxia 4/5 years ago I didn’t quite know how to handle it and losing my independence was my greatest fear but with my incredible friends and family I’m still able to do most things.
I still have days when it all seems impossible such as when I lose my balance, fall over and bruise my butt (it’s happened a few times)
I had one thing that I still wanted to do and as we can’t predict the progression of my Ataxia I thought it might be best to do it sooner rather than later while I can still do stairs. That thing was to go to a gig performed by my favourite band who I’ve already seen 7ish times (now 8). However the venues they perform in aren’t always the most accessible so when I bought tickets several month ago I realised it needed serious planning.
First thing: email the venue to let them know and ask about wheelchair accessibility. Patterns in Brighton were incredibly helpful listing the number of steps and where they were and letting me sit at the front in my chair which they carried down for me. (Being in a wheelchair gets you a prime position as well :-))
Second thing: Invite a friend who loves the band and doesn’t mind being my carer. Enter the awesome Siobhan Eyley with whom I have an absolute blast whatever we do.
We napped, shopped, went up the i360 , ate lots (but no donuts :-(), got drunk and watched the best band ever.
Third thing: book a hotel room. Turns out cheap hotels don’t have lifts or accessible bathrooms so we found a room with a very small bed for us to share
The bed came in useful especially after getting home at 2.30am Sunday morning so needing a nap Sunday afternoon.
Then it was booking fun stuff.
Thank you to everyone for making the weekend such a blast, especially Siobhan and I am so glad I woke up with no hangover on Sunday.
Last Tuesday I flew to Lisbon with my mum as my carer for a work conference for 3 days and 4 days to relax after.
Lisbon airport is part of an amazing service called MyWay. https://www.flytap.com/en-gb/special-needs/my-way
This amazing service meant that when we arrived on the tarmac and all other passengers disembarked down steps and onto buses an enclosed cabin lift took me from the aircraft door and down to a waiting mini bus. I was then pushed all the way through the airport where were got our luggage and a MyWay person continued to get us all the way to a taxi. This service meant from the moment we landed to getting in a taxi we were escorted. This took a massive weight off our minds and with the same thing going home it meant the journeys were easy.
Travelling around Lisbon though was not. There are many blogs about wheelchair travel and how difficult it is but we still gave it a go.
The hotel that we stayed at was found by the conference organisers with a reduced mobility bathroom which had a shower seat and rails which was brilliant. The Pestana CR7 was brilliant with great food and the staff were so helpful getting me into taxis each day.
The conference was brilliant, meeting people I’ve been emailing for years and hearing some really interesting talks.
Our 4 days relaxing involved an unsuccessful visit to the castle (uneven cobbles on a hill) a trip to a panoramic view 18 floors up (amazingly windy), Lisbon zoo, (lots of animals but they needed more enrichment), Jeronimos monestry (from the outside) and Belem and some shopping.
If you’re going to Lisbon in a wheelchair I would advise booking some wheelchair friendly tours so that each day you see what you want to see with the assistance you need.
Also the wind can be incredible so wrap up warm with a scarf especially.
Staying near Praco de Comercio means it’ll be flat where your hotel is (important so you don’t roll away when leaving the hotel)
So in summary I would say travelling round Lisbon in a wheelchair is difficult but if you plan ahead then possible.
10 years ago I decided I wanted to celebrate my 30th birthday at Giraffe Manor. 5 years ago it was discovered my cerebellar was atrophied and 2 years ago my ataxia started in earnest.
So we had to put more effort into planning my dream. Giraffe Manor has one wheelchair accessible room so once we decided to go sooner than my 30th we booked the room and arranged the rest of the holiday around it.
Our biggest thing was making sure the hotels were wheelchair accessible for me and for this reason we used a travel company who said they had the knowledge to ensure we stayed in hotels that suited me.
Arriving at our first hotel, a lift took me up to the lobby and everything was wheelchair accessible except for our room which had a bath and not a walk in shower. If you’ve ever met someone with ataxia you will know they cannot stand in a bath to shower so I resigned myself to strip washing for 36 hours.
The next morning I discovered mum and dad’s room had a shower so spent breakfast happy in the knowledge I could get clean. Wheeling to mum and dad’s room we discovered that their door way was not wide enough for my chair. Luckily I can still walk short distances but if I couldn’t I’d have been stuck not being able to shower.
Overall the accessibility at the Ole Sereni was lovely and I really appreciated that the staff always asked before pushing me as a lot of people just push me without asking which is highly irritating and makes me feel really helpless and lacking in independence.
During the week we had a lovely guide called James from Southern Cross who was so helpful and meant my first holiday with Wilbur (the name of my wheelchair) went without a hitch.
Giraffe Manor was as incredible an experience as I had hoped with such helpful staff. My amazing friends ven arranged a surprise photoshoot and the help I received during this was incredible with a chair even being bought out so I didn’t have to be photo’d in Wilbur.
On the last day at the Manor I had the pleasure of meeting one of the general managers who listened to my two suggestions of a non slip mat and hand rail in the shower but these being my only comments for the two night stay was pretty incredible and the kindness of all the waiters and staff more than made up for these two things.
Some of the Giraffe Manor staff who made our stay amazing
The accessibility at our final hotel was appalling. It was not the hotels fault but the travel companies as they were in charge of finding us suitable hotels. The entrance to the hotel was down a flight of steps which I cannot do so James had to take us round to the “wheelchair entrance” of the hotel. This turned out to be the service entrance and involved getting the chair over a sewage grate, down a steep uneven slope and along the back entrance to get in the hotels back door.
An hour after we should have been able to check in my mood had dropped as we sat in the bar unable to go to our rooms and this really should have been a warning to me for the rest of our stay.
Having finally got into room my bad mood continued as we once again discovered that the chair couldn’t get into the bathroom and the lip of the shower was so low more than a two minute shower caused flooding across the whole room turning the bathroom into an ice rink which for a girl who is already unsteady on her feet was appalling.
So we decided to explore the hotel in attempt to boost my mood. I really wish we hadn’t. I’ve bullet pointed the issues to save time.
The only way to get the wheelchair to the restaurant for breakfast, lunch and dinner was through the garden as the inside route involved a flight of stairs.
The special restaurant we wanted to go to on the Saturday night was up a flight of stairs so I couldn’t get to it.
The loo in the restaurant was up 8 steps so I was taken out to the pool loo.
Dessert was up a level so my amazing friends and family had to get me pudding
The sofas were up a level so I couldnt easily get to them to relax.
A combination of foul mood and torrential rain led to me and my friends getting room service Thursday night as I would have got soaked wheeling through the garden.
This experience along with the staff telling me off for wheeling myself in my chair and just taking over led to a not great last few days.
On Sunday morning I asked for the manager to come and see me. An interesting ten minutes later she had reassured me that the refurbishment they were currently doing was to make the hotel wheelchair friendly with a new entrance, special wheelchair rooms, loos etc so I will be heading back to Serena Hotel to see how it has improved.
Hopefully this post will make you all realise how important accessibility factors are to those of us who cannot run, jump or even walk.
However even with these issues I had an amazing holiday thanks to mum, dad, Siobhan, Tammy and James.
Thursday morning we were booked to board the Rocky Mountaineer and as most travellers in wheelchairs will tell you I was apprehensive but I really needn’t have been.
They had a lift to get me onto the train and once I was they had another lift to get me up and down to the top deck. As breakfast and lunch was downstairs I used this lift several times and I have to say it was incredible service.
We napped, shopped, went up the 
How Rare? 