Showing posts with label Nystagmus. Show all posts
Showing posts with label Nystagmus. Show all posts

Thursday, 4 July 2013

Rachel's story of the Scottish rally


It’s been a wee while since my last update so I thought I would let you all know how things are going in the Rally2Raise camp after two more rounds of the Scottish Rally Championship.

Firstly, I best start with the sad news that Katherine has had to retire indefinitely as co-driver due to a dicky ticker. The past few months have been quite a challenge with Katherine getting poorly followed by myself catching glandular fever, from which I’m STILL feeling the fatigue.  Thankfully it only took two days to get over the Speyside Stages as opposed to a full week after the Scottish Rally. 

With Katherine and I falling ill at roughly the same time we had to decide whether or not to pull the entry for the Scottish, it was touch and go right up until the week before when I decided I was going to go for it due to a lady who had just passed away.  I had already drafted in Caroline Lodge to co-drive, always a risk when you’re frends with someone and get into a car together but it paid off!

Just before the Scottish we lost a very dear friend and one of the most selfless women I have ever met, Cath Simpson.  I had been chatting to her the week before and she knew it was coming but her attitude to it was something I had never seen before, good humoured and looking on the bright side.  Right till the last.  There was no question that Barry and I would attend her funeral, it just so happened it fell the day before the rally.  Our brief was to wear rally gear so we did.  The ceremony itself was one that suited her down to the ground.  I was doing well until her coffin appeared with her marshals tabard draped over it.  Motorsport in her veins that one!




It was because of  Cath that I wanted to get out and do the event and make sure she was represented in some way so, taking inspiration from her family, we acquired two marshals tabards and hung them up in the rear of the rally car, along with a sticker on the rear window.

With us at the funeral we were extremely grateful  to Colin and Craig Wallace who trailered the car down to Dumfries for us. Without them we wouldn’t have been able to attend the funeral or have had the energy to get down the road and back.  So thank you both!

We completed our pre-event formalities with no problems other than accidentally gatecrashing a photoshoot for the Armed Forces rally team! We then retired to our accommodation.  As everything was last minute Caroline stayed at her house which wasn’t too far away from Dumfries.  I stayed in a posh hotel with a jacuzzi! I’ve never had a jacuzzi in my room before so I made the most of it after completing the finishing touches on the car.  I could get used to that! 

The day of the rally dawned and I set off to meet Caroline at the Heathhall service area. Hampered by a faulty traffic light I found my way unaided! Feeling the usual nerves we left for the pre-start holding area and had the craic with the lads there waiting. 

We loved the start in the centre of Dumfries, it was very well attended and a great advert for the sport! We set off from the control and headed up to Ae for the first of two stages in the forests there. I realized quickly during the first stage that I would have to take it very easy.  I was pretty shattered but we were getting on very well in the car and enjoying it.  

Two stages down we headed for service, luckily there was nothing required on the car except a spanner check. Then we headed out to the last three stages.  I really enjoyed the spectator stage with the watersplash which was stage three,  loads of folk watching and taking photos showing the E.Watson and Son/BSW Ltd and Pirelli stickers on the front of the car!


By that point we had gained a crew to help.  I won’t embarrass them but they were two drivers in one car as opposed to the two co-drivers in our car.  So we thought it only fair to give them a hand on the road section by helping them with times and making sure they didn’t go wrong.  It was gutting to see them off in the penultimate stage. 

We made our way through the final two stages incident free, I think the only moment we had was a slight slide.  I was very glad to cross the flying finish, I have never felt that tired after an event.  I only had one wobble during the day that had me questioning whether I could continue and I soon got rid of that! Once again our Pirelli tyres were brilliant, thanks to AW Motorsport for their help supplying them.

We got to the finish in the centre of Dumfries and there were even more people stood watching including Steven McPherson from our sponsor McPherson Document Solutions. We had avoided results all day and hadn’t looked at our phones.  Sat in the queue waiting to go into the control we snuck a peek only to discover we’d won second in class and first female driver! There were more than two finishers in the class and more than one female driver started the event so it wasn’t a given.  Unfortunately, as we approached the finish line I was made to get out the car and face a bank of photographers!!! I can’t say I was looking my best and was holding the trophy which can only be described as slightly phallic!!  Ha ha ha!!  All joking aside it was an absolute honour to receive it, past recipients such as Louise Aitken-Walker have stood there so it only seemed right to dedicate it to Cath. And yes, she would have found the phallic element to it absolutely hilarious.



As the Scottish was also a round of the British Rally Championship I didn’t let the awareness raising side of Rally2Raise slip.  I made sure that we weren’t overlooked by the press or the increased number of spectators and higher ups.    We were spoken to by a number of journalists and lots of people asked about Rally2Raise and our two supported causes, the Nystagmus Network and Bottle Stop.

All in all the Scottish Rally wasn’t what we expected when we first made our 2013 plans but we adapted and now have a team with a new member which plays to everyone’s strengths... except mine.... I am not the best driver ha ha ha!!

So the Scotttish was done and we were ready to put the entry in for the Speyside Stages in Elgin. And our adventures there will be the next report!

Rach

Tuesday, 30 April 2013

Rally2Raise: The project continues!

After the highs and lows of 2012 we decided to have a conversation about whether to continue in 2013 and, if so, how and where and, finally, who the beneficiaries would be.

It didn’t take long to decide to continue. It was a no brainer but we needed to plan how it would be possible given that we aren’t rich and there’s always too much month left at the end of the money.  We needed sponsors.  We decided what we could afford ourselves and what we would need to cover. Fuel, accommodation, parts etc could be provided from our own pockets but we’d need help with entry fees and tyres. A plan was made to try and attract sponsorship. More of that later!

Next we had to plan what events to do. We decided that we would stay with the Scottish Rally Championship and aim to compete in five events. We wanted to support the clubs who helped us last year where possible so, as it was too late to enter the Snowman rally, we decided that the first event would be the Granite (to be featured in the next blog – stay tuned!). The plan after the Granite, subject to getting a budget together, would be the Scottish, the Speyside Stages, the Merrick and McRae Stages.

Deciding on charities to support was actually very easy.  As most people are aware, the idea of Rally2Raise is using rallying to raise funds and awareness for the chosen charities by competing and getting the car seen in as many different places and in as many forms of media as possible.  2012 was very successful and £2,500 was raised but, as we supported four charities, the total was watered down somewhat by splitting in four ways. 2013 is to be the year we take “raising funds, raising awareness” literally and have one charity for fund raising and one for awareness raising which doesn’t necessarily require funds to be effective in its message.  We also wanted the charities to be small and not especially well known. 

The Nystagmus Network was chosen as the fund raising cause as Archie, Rachel’s son and Katherine’s Godson, has the nystagmus eye condition which normally renders most sufferers unable to drive.  Archie comes from a very motorsport orientated family on both his parents’ sides. He attended his first rally when he was 4 weeks old. The fact that he is unlikely to ever be allowed behind the wheel will be a huge blow when he’s old enough to understand.  The Nystagmus Network helps to fund research into the condition as well as assisting sufferers to live as normal a life as possible.  They offer information to everyone from schools to hospitals as well as anyone else interested in the condition.  For more information about anything to do with them please visit their website at www.nystagmusnet.org.

The Bottle Stop Campaign caught our eye as perfect for awareness raising.  It is trying to get glasses and glass bottles swapped for plastic ones after certain times in late night town centre pubs and clubs.  We had seen the campaign founder Jane’s story via mutual friends on Facebook and decided to look into it some more.   What we discovered saddened us as the story of how Bottle Stop came to be was revealed.  We realised we wanted to support Jane’s cause as she had shown tremendous courage in everything she has been through and is an example of true bravery.  Also, in our jobs, we regularly see the aftermath of people under the influence using glass bottles as weapons. When people get to a certain level of intoxication they wouldn’t care what they were drinking from and the more sober amongst them should understand the reasons for the swap.  There are people who consider themselves responsible and would never act in such a manner but all it takes is a moment and lives are ruined forever.  Again, more information can be found by visiting www.facebook.com/bottlestopnow.

So, we have our events and we have our charities and through some blooming hard work we managed to secure sponsorship from E. Watson and Son, Pirelli, Andrew Wood Motorport, McPhersons Document Solutions, Charles Derby Ecosse, Halo Lettings and San Juan Services in addition to the long standing support from Songasport, Clark Motorsport and Motorsport Mugs.  We still have a lot to raise to enable us to realise the aim of five SRC rounds but we’re quietly confident and have had a lot of interest. 

How do we intend on generating publicity and donations? Well, we have decided to not only challenge ourselves to the competitions themselves, we will also do something out of the ordinary before every event.  The Granite idea was to dye our normally blonde hair Rally2Raise red.  In doing so we have raised over £300! A massive thank you to everyone who has donated so far.  It will all be explained further in the Granite City Rally blog, coming to an internet site near you soon!

There we have it, the Rally2Raise plan for 2013.  We will, of course, be part of other events, such as running as course car on the excellent Saltire Classic Rally near Perth which we did in March. There will also be non-rally related appearances and events. We will also not be asking for donations for the sake of them, we will be earning them and, of course, running another raffle as last year’s was so popular - we already have some prizes donated!  However, if you wish to make a donation to the Nystagmus Network regardless of what we’re doing please visit www.justgiving.com/rally2raise.

We are eternally grateful to everyone who has donated previously, both this year and last, and we look forward to an even larger total at the end of 2013!

Rachel and Katherine

Wednesday, 14 December 2011

Archie on a mission

Recently, thanks to Christmas being on the approach, we have had a lot of folks staying over to see Archie before Santa comes. What has struck me is the amount of people that have said his eye oscillation is in decline. How does that work? He seems no different to me but then again I see him every day and think, due to my PND neurosis, that it looks worse.

The eye doctors were very impressed with him when we last visited and I should latch onto that seeing as he doesn’t need glasses and is otherwise fit and well.

He's on a mission now to destroy everything in reach so I have a distinct feeling his vision is decidedly fine.

Before my next update please look at Nystagmus Network website - link over there >>

Thank you so much for supporting us!

Rachel

Wednesday, 16 November 2011

So how did Rally2Raise come about? Rachel tells us!

I've been asked quite a lot recently about how the Rally2Raise concept came about, well, sit back, get a cuppa and I'll tell you a little story...

As you're hopefully aware by now we are raising money for three charities, nystagmus, cancer research and multiple sclerosis (MS). At the Scottish rally in "summer" 2011 I discovered that a good friend of Barry and myself had pancreatic cancer. It was a bit of a shock as he's very young and works outdoors in a profession that keeps him physically fit.

On the very long truck journey from Dumfries to home near Aberdeen I started to think. I couldn't use my medical skills to help, except offer general advice as a friend and I hated that feeling. I remember that Jemma Bellingham and myself did a very successful campaign in 2007 to raise money for cancer research so I considered doing the exact same again but figured so many people followed suit that the rally family would probably be bored of that now. As I sat looking out of the window I started to form a plan. What am I good at? Baking, being loud, laughing, speaking to folk... How about making it a year long campaign with a logo and loads of events but not just in aid of cancer research?

I had an idea of a two car team, one with a novice driver (me) with a co-driver who's never even sat in a rally car and knows nothing about it. The other an experienced driver with a celebrity co-driver. Again, inexperienced probably. The plan being to work towards competing on the Scottish rally in 2012. Now, the first part is happening, I have a rally car and Katherine Begg, rally novice, is co-driving. The celeb co-driver is actually under discussion, along with the experienced FEMALE driver. Watch this space!

When I approached Katherine with the idea I had only decided on cancer research and needed inspiration so she suggested the MS Society as her mum had passed away far too young from the condition, that was a no brainer, absolutely yes!

My baby had recently been diagnosed with nystagmus so I looked into charities and discovered the brilliant Nystagmus Network. A very worthy cause, helping the sufferers of this often debilitating condition, although my son’s does not require glasses, it can be so bad that people are registered blind. Most sufferers never drive. The eyes move involuntarily from side to side, up and down and it can be caused by a number of things such as injury, disease and idiopathic nystagmus which basically means they have no clue how it started but there’s no sinister reason for it. My son will be monitored until he stops developing, he has been through many tests and thankfully he has idiopathic nystagmus. I want to raise money to not only help sufferers but allow more research to be done as there have been very few advances in treatment since my dad was diagnosed with the condition as a child.

The postnatal depression awareness part of Rally2Raise is to help erase the stigma attached to it and help women realise they're not a failure, it's very common, more common than is known. It's the same as any disease that needs simple treatment to be cured. And it most certainly can be cured. I suffered quite badly after my son arrived in the world and made the decision immediately to let everyone know. I wasn't ashamed, it wasn't a dirty secret, my hormones were all over the place and all I had to do to cure it was take one pill per day. Ok, at first I felt a bit shattered but the improvement was more or less immediate, although it can take up to two weeks to work. Health visitors are there to help, hiding it won't do ladies any favours - that can lead to future issues that could take longer to sort out. I felt unable to cope at first but now realise this was the "depression".

I do think if the name was changed to postnatal syndrome or similar then the stigma would be eradicated. Unfortunately, despite a lot of searching, we were unable to find a national charity to support but, I didn't want to leave it out as I think if we can help just one person realise they have it and they're not on their own and see their GP, we've done our job.

So there you go, that’s the reason for Rally2Raise. Please support us!

Saturday, 5 November 2011

Nystagmus - what is it?

Nystagmus is an involuntary movement of the eyes which often seriously reduces vision. Few people with nystagmus can drive and most encounter some difficulties in every day life, education and employment.

I was unaware that I had a family history of nystagmus. I knew my dad had poor eyesight and that his eyes moved a bit but, as I'd grown up with it, to me it was completely normal. Ok, my dad couldn't drive because of it but again, because I grew up with it, I never gave it any thought.

After my son was born and we got his reflux under control we settled down to family life. I began to notice Archie's eyes moving around at about four weeks but, thinking he was just very inquisitive, I left it. Then folk started to point it out and ask if it was normal, well, now you come to mention it I'm not sure. Away I went to Google and read about nystagmus, still not making the connection to my dad. We made an immediate doctor’s appointment and unfortunately, although the doctor had heard of the condition, she was clueless as to how to proceed and even asked what I'd discovered on Google!

We were made to leave the room while she called the hospital to speak to a specialist. This was making me very nervous indeed as, being in the medical profession myself, I know this means they're quite worried. We were called back in and informed we'd be seeing a consultant at the children’s hospital within three weeks. She couldn't answer any of my questions so I went home and informed my family via text message as I didn't want to speak to anyone. It was now that my dad called and told me about his condition. I was totally shocked but relieved as he lives a perfectly normal life and you wouldn't know he had it. Although, now knowing this was the reason my dad couldn't drive, I looked into it again and discovered that a high percentage of sufferers cannot drive. Coming from a family that is heavily into motorsport and having a dad that was a professional rally driver and world champion I thought this may hit Archie very hard when he grows up so I made the decision there and then to tell him from an early age should that be the case.

At our first appointment we saw the consultant and he immediately asked if he could video the eye oscillation as they don't see that many babies with such a pronounced movement. I agreed. As soon as the camera came out Archie started smiling and it broke my heart as he was unaware of what it was for. He had an eye drop test and a whole lot of others that I can’t remember but the general consensus was that he would have to undergo a MRI scan to check there was nothing sinister going on in his brain. I immediately knew from my work that this would require a general anaesthetic. Not my ideal situation but if it meant getting a diagnosis and possibly a treatment I would cope. He was also to have a light test to determine the wiring of his retina to the brain.

The day of the light test we went in and I was, as usual, anxious with Archie taking it all in his stride. We were straight into the room and I sat on a chair with him on my knee while electrodes were attached to his head. They don't deliver a shock by the way, they just measure the brain waves. He loved the wires hanging off them so I had to keep him occupied so he didn't wreck them. Then the lights came on and he was in awe! He loves lights, so much so that he tried to pull the lamp closer to him and broke it, yes my baby is freakishly strong! At the end of the test the lady conducting them said all was normal. Excellent!

Next test was the dreaded MRI. We arrived in the morning with a starved child, not fun. We stuck him in the cot provided and proceeded to entertain him to keep his mind off the rumbly tummy. He loved the attention. I found out we were first on the list with him being the youngest and we were sent for on time. We made our way down the twisting maze to the MRI anaesthetic room and I discovered I wasn't as anxious as I expected. Upon entering the room the anaesthetist wasted no time, gave him the oxygen and gassed him down with no messing, I couldn't help but laugh as Archie tried to eat the anaesthetic tubing. Hungry boy! My other half, Barry, was very obviously shocked I didn't come out in tears, as was I as I fully expected it. We had time for lunch then returned to pick him up. He didn't cry, he just went straight back to sleep then devoured a bottle and a full jar of mango when we got back to the ward. We were allowed home pretty fast.

We heard nothing for ages from the hospital but were assured that if there was anything untoward they would have picked it up immediately. So I continued with the visual stimulation and discovered there is nothing wrong with his eyesight as I can't leave the room for a second without him chasing after me like a greyhound. We recently had another appointment with an orthoptist. I didn't fully understand why but he explained all about the tests and findings and we were very happy to discover that he doesn't need glasses, his vision is very good, his tests were all normal and there is no reason at the moment why, he couldn't drive one day. Over the moon doesn't cover it, although I'm only cautiously optimistic about the driving, I understand this is a condition which is very hard to gauge in babies.

I feel we need to raise awareness of the condition as most folk don't know what it is and even the professionals that do don't fully understand it therefore advances over the years from when my dad was diagnosed have been few and far between.

The condition does not affect personality, let me tell you, anyone that knows Archie will tell you that he is very happy, very outgoing and loves to be the centre of attention... long may it continue!

For more information on nystagmus please visit www.nystagmusnet.org.