One of my main reasons for starting the Rally2Raise project was my 39 year old very good friend being diagnosed with pancreatic cancer.
As a medical professional knowing about this version of the disease I found it difficult to provide reassurance for both my own fiancé and the sufferer's close family and friends. After all, he had age on his side at 39.
As time has drawn on since the diagnosis, the news has come to me today that our pal is not well at all. We are sending every last bit of good wishes, love, hope and healing to him, if there is any justice in life he will make a full recovery. Come on lad, you’ve got a wedding to attend next November, be stronger than that dirty, indiscriminate disease. We love you very much, Rach, Barry and Archie.
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
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
Katherine's emotional roller coaster - Part 5
Mull, vodka & another wait...
Realising that the next appointment was booked for when I was away on Mull I had to again delay it. The next appointment was made for the 19th October. One thing you'll have realised is that all my appointments are rebooked, anyone would think I have an active social life?! :)
The week before my appointment was to be both a holiday and work on the Mull rally, plus the launch of Rally2Raise. What better place to start than this hugely popular rally? It was a great launch, we raised a good amount of money and raised the profile of who we were and what we were trying to achieve. My daughter was actively involved ensuring that everything was just right and making lists of jobs to do. To say she was excited is an understatement.
Rachel and I were very impressed with how people responded to it all and offered to help the causes. It was also a great break away from all the worries for me. The vodka consumed was record breaking and the laughs and adventures that followed will stay with me for many years. I could probably write a book just on the escapades of that week. As has been told through our blogs we have faced many setbacks but always seem to come back stronger and more determined to overcome whatever is thrown at us next. But I digress. Mull was fab for many reasons and I was ready to face my next appointment, calmer and less emotional.
Thinking that it was just going to be another scan I again went on my own! Idiot!!! Mr Parmeshwar discussed that due to the results of the biopsy not necessarily being in keeping with what the scans were showing they may have to redo the biopsies! "Oh joy" but they wanted to do the mammogram and ultrasound scan first. It could be that the lump/mass wasn't going to be there this time as some just appear with menstrual cycles. Or if there was no change at all they might just leave well alone but keep "an eye" on it. As you can guess I was hoping that it had gone altogether. So off I went again for more scans and revisiting the waiting room. At least I knew the routine this time but really wish I'd asked someone to come with me. Plus I'd expected to be back home pretty quick so hadn't had my breakfast or a cup of tea!
The ultrasound again was the point at which I just felt in shock. The nurse performing the scan said "I'm sorry Katherine we're going to have to take some more biopsies." "Oh shit" is what I thought. So it had changed :(
A quick few texts to my nearest and dearest followed but I couldn't ask my dad to come through (although he did offer) cos he couldn't have come with me for the next part anyway. Sigh.
I had to wait for the biopsies because they were having to fix the X-ray machine, so I sat anxiously waiting to go back in. I was mostly anxious because the pain I got after the last ones had gone on for a good couple of weeks and I wasn't looking forward to experiencing that again. The same lady that performed them last time called me through and briefly explained what they were to do again minus the insertion of the metal tag. I just sighed in agreement with it all. It had to be done. "CLICK CLICK CLICK CLICK CLICK" five biopsies taken. But because she wanted to be certain that she'd caught a sample of the mass she explained she was going to take some more! "Crikey"
"CLICK" "OUCH, Oooh that was a bit sore" - the local anaesthetic hadn't quite reached that bit. Another injection followed plus another three samples taken, so nine altogether!! "Wonderful" I just thought "this is gonna hurt". They are great people at the clinic like I've said all along I just didn't expect to be going through it all over again. I didn't need to see any of the medical team again, I was free to go once I'd made my appointment for the results. Can you guess what's coming next? Yup, it clashed with my first week in my new job and they couldn't change it to my day off. They only do result appointments on a Tuesday apparently. There was no way I was going to miss a day at work on my first week for my results. It was intense enough as it was. So I made it for the following week, which gave me time to swap my day off. Phew!!
Now I was free to go for a cup of tea. A quick text to my mate Mat who works in day care theatres followed and off I went for a well deserved cup of tea with some of my old work colleagues :)
Realising that the next appointment was booked for when I was away on Mull I had to again delay it. The next appointment was made for the 19th October. One thing you'll have realised is that all my appointments are rebooked, anyone would think I have an active social life?! :)
The week before my appointment was to be both a holiday and work on the Mull rally, plus the launch of Rally2Raise. What better place to start than this hugely popular rally? It was a great launch, we raised a good amount of money and raised the profile of who we were and what we were trying to achieve. My daughter was actively involved ensuring that everything was just right and making lists of jobs to do. To say she was excited is an understatement.
Rachel and I were very impressed with how people responded to it all and offered to help the causes. It was also a great break away from all the worries for me. The vodka consumed was record breaking and the laughs and adventures that followed will stay with me for many years. I could probably write a book just on the escapades of that week. As has been told through our blogs we have faced many setbacks but always seem to come back stronger and more determined to overcome whatever is thrown at us next. But I digress. Mull was fab for many reasons and I was ready to face my next appointment, calmer and less emotional.
Thinking that it was just going to be another scan I again went on my own! Idiot!!! Mr Parmeshwar discussed that due to the results of the biopsy not necessarily being in keeping with what the scans were showing they may have to redo the biopsies! "Oh joy" but they wanted to do the mammogram and ultrasound scan first. It could be that the lump/mass wasn't going to be there this time as some just appear with menstrual cycles. Or if there was no change at all they might just leave well alone but keep "an eye" on it. As you can guess I was hoping that it had gone altogether. So off I went again for more scans and revisiting the waiting room. At least I knew the routine this time but really wish I'd asked someone to come with me. Plus I'd expected to be back home pretty quick so hadn't had my breakfast or a cup of tea!
The ultrasound again was the point at which I just felt in shock. The nurse performing the scan said "I'm sorry Katherine we're going to have to take some more biopsies." "Oh shit" is what I thought. So it had changed :(
A quick few texts to my nearest and dearest followed but I couldn't ask my dad to come through (although he did offer) cos he couldn't have come with me for the next part anyway. Sigh.
I had to wait for the biopsies because they were having to fix the X-ray machine, so I sat anxiously waiting to go back in. I was mostly anxious because the pain I got after the last ones had gone on for a good couple of weeks and I wasn't looking forward to experiencing that again. The same lady that performed them last time called me through and briefly explained what they were to do again minus the insertion of the metal tag. I just sighed in agreement with it all. It had to be done. "CLICK CLICK CLICK CLICK CLICK" five biopsies taken. But because she wanted to be certain that she'd caught a sample of the mass she explained she was going to take some more! "Crikey"
"CLICK" "OUCH, Oooh that was a bit sore" - the local anaesthetic hadn't quite reached that bit. Another injection followed plus another three samples taken, so nine altogether!! "Wonderful" I just thought "this is gonna hurt". They are great people at the clinic like I've said all along I just didn't expect to be going through it all over again. I didn't need to see any of the medical team again, I was free to go once I'd made my appointment for the results. Can you guess what's coming next? Yup, it clashed with my first week in my new job and they couldn't change it to my day off. They only do result appointments on a Tuesday apparently. There was no way I was going to miss a day at work on my first week for my results. It was intense enough as it was. So I made it for the following week, which gave me time to swap my day off. Phew!!
Now I was free to go for a cup of tea. A quick text to my mate Mat who works in day care theatres followed and off I went for a well deserved cup of tea with some of my old work colleagues :)
Monday, 21 November 2011
Katherine's emotional roller coaster - Part 4
The Long Wait...
I can't quite remember what day I received the phone call but having a missed call on my phone from the breast clinic was a scary thing. I phoned them back feeling quite shaky. Fortunately (or not) it was just a call to say there had been such a large number of samples to be tested and there was going to be a delay as to when my results were through. It would be another week.
A few thoughts went through my head, I'm not going to have to face an interview with the thought I'd be picking my results up afterwards (the Blackpool interview). I wouldn't have to face an interview knowing my results (the Lancaster one). But also, that I couldn't make the next result appointment because I was going on my long awaited and deserved holiday with my daughter on Thursday. I'd already had to delay my holiday because of the Lancaster interview, I wasn't going to be able to delay it again. "Oh for f**ks sake" I thought, the frustration was so overpowering. I explained to the lady on the phone that I would be away and so the results appointment was made for when I returned. They couldn't relay the results over the phone so I had to wait. 30th August!! Oh well, at least I was going to be away in Scotland spending time with my daughter, Rachel & gorgeous Godson Archie. Then later my Dad and Pam were coming up too :)
It was during this time that Rachel was developing the concept of what is now known as Rally2Raise. Plans were being formulated and contacts being made, it was a great way of gaining perspective in my life and having, along with my holiday, another focus. Plus of course I knew I'd got the job as an ODP at Blackpool Victoria Hospital! Wahooooooooooo!
On my hols now, the days passed by and I can honestly say I hardly thought about the results. Quite a contrast to the days previously when sleep was sparse and thoughts were frantic and extremely depressive. The holiday was undeniably the best medicine in coping with things.
30th August came and off I went with Dad to meet Caroline the Macmillan Breast care nurse at the breast clinic for my results. She was lovely, the result showed it as normal breast tissue (??), no malignancy. A huge relief for my Dad, and although, yes it was for me too, I still wanted to know what it was and questioned in my head whether they actually got the sample they needed. Seeing as how the lump was so small they might have missed it?
They wanted to monitor the lump and so I had another appointment made for four weeks time. They had to allow time for all the bruising and swelling to go before they could scan it again. They were looking for any growth or change in the lump. I just wanted it out......
I can't quite remember what day I received the phone call but having a missed call on my phone from the breast clinic was a scary thing. I phoned them back feeling quite shaky. Fortunately (or not) it was just a call to say there had been such a large number of samples to be tested and there was going to be a delay as to when my results were through. It would be another week.
A few thoughts went through my head, I'm not going to have to face an interview with the thought I'd be picking my results up afterwards (the Blackpool interview). I wouldn't have to face an interview knowing my results (the Lancaster one). But also, that I couldn't make the next result appointment because I was going on my long awaited and deserved holiday with my daughter on Thursday. I'd already had to delay my holiday because of the Lancaster interview, I wasn't going to be able to delay it again. "Oh for f**ks sake" I thought, the frustration was so overpowering. I explained to the lady on the phone that I would be away and so the results appointment was made for when I returned. They couldn't relay the results over the phone so I had to wait. 30th August!! Oh well, at least I was going to be away in Scotland spending time with my daughter, Rachel & gorgeous Godson Archie. Then later my Dad and Pam were coming up too :)
It was during this time that Rachel was developing the concept of what is now known as Rally2Raise. Plans were being formulated and contacts being made, it was a great way of gaining perspective in my life and having, along with my holiday, another focus. Plus of course I knew I'd got the job as an ODP at Blackpool Victoria Hospital! Wahooooooooooo!
On my hols now, the days passed by and I can honestly say I hardly thought about the results. Quite a contrast to the days previously when sleep was sparse and thoughts were frantic and extremely depressive. The holiday was undeniably the best medicine in coping with things.
30th August came and off I went with Dad to meet Caroline the Macmillan Breast care nurse at the breast clinic for my results. She was lovely, the result showed it as normal breast tissue (??), no malignancy. A huge relief for my Dad, and although, yes it was for me too, I still wanted to know what it was and questioned in my head whether they actually got the sample they needed. Seeing as how the lump was so small they might have missed it?
They wanted to monitor the lump and so I had another appointment made for four weeks time. They had to allow time for all the bruising and swelling to go before they could scan it again. They were looking for any growth or change in the lump. I just wanted it out......
Thursday, 17 November 2011
Katherine's emotional roller coaster - Part 3
Tick Tock....
After my appointment I went back to work with Ashia to see Pauline and try and explain all that had gone on. I was mentally exhausted and the big hug I got from Pauline was a great comfort to be honest. Again, reassurance came that all would be ok regardless of the result. I was sent home, sore and dazed but as it was my last ever day as a student ODP at Lancaster the next day she asked me to come in just so I could say my goodbyes etc.
I went home to a very quiet house that afternoon, my daughter was away on her holidays with her dad. I just felt so lost and not looking forward to telling my dad about the appointment and consequently what had been found. He was at work until 6pm so I thought I'd go round and see him at 7. Time has never gone so slowly and I just wound myself up with the stupid thoughts of "what if?" over and over.
I phoned my daughter and tried to be as normal as possible (extremely hard for me I can assure you at the best of times!). She was excited about all the things she'd been up to that day and the upcoming events at the clubhouse that evening. I felt so sad inside for what Bethany might actually have to try and comprehend when the results were through. She is an extremely bright little girl and knows way too much about "sad stuff" for an 8 year old already that I decided I wasn't going to tell her anything until I had to. Her worst nightmares and dreams have been about losing me or her dad so why would I tell her about this when I had no answers? With that in mind it was best that I kept those who knew to a minimum as well as I really didn't have anything to tell did I?
Now to tell my dad! OH GOD! I felt so sick. As soon as I walked through their door I know they (my dad and step mum, Pam) knew something was up. I can't remember what I said I just know it came out more as a wail then the calm manner I'd envisaged and planned. Damn it! I'm way too emotional sometimes. More hugs followed and the telling off for not phoning him at work! Also, what shocked me most was how calm he was. It was definitely what I needed, my brain was just in overdrive and needed this calmness to make me see that all was fine. We would face whatever happened as a family and I would be supported throughout. At times I do try and face things on my own, I'm extremely stubborn and too independent for my own good. It's normally the wrong times too. A sense of relief washed over me and knew my next hurdle was just getting to results day without spontaneously combusting.
My last day as a student had arrived, a day that I'd been looking forward to for the last 4 years had come at last. What was supposed to be a day of celebrating achievement and an end to the stresses of "studentdom" had been marred by this bloody lump! Luckily as it was my last day those at work probably thought the tears that kept welling up in my eyes were due to the fact it was my last day and that the only four students on the course not to have got a job before qualifying was us four at Lancaster. It was quite a good shield to hide behind as it meant I didn't have to explain to everyone what was up. The truth is I just wanted to go home and be away from everyone, it's how I normally deal with events in my life. I hadn't slept all night, I was extremely sore and couldn't stop thinking about the worse case scenario. I followed Ashia around all day, she was like my comfort blanket. I really didn't care what anyone thought about that either. Like I've said before, she is great at distraction and helped me smile and giggle. I just hoped I hadn't spoilt her last day by being an emotional pain in the butt. I don't think I'll forget the last goodbye in Recovery when all four of us (I did tell my uni mates about the lump) and Pauline said our last goodbyes because we just all started crying. What a day!!
Tuesday was to be result day, only 6 days to go! Or so I thought!!
After my appointment I went back to work with Ashia to see Pauline and try and explain all that had gone on. I was mentally exhausted and the big hug I got from Pauline was a great comfort to be honest. Again, reassurance came that all would be ok regardless of the result. I was sent home, sore and dazed but as it was my last ever day as a student ODP at Lancaster the next day she asked me to come in just so I could say my goodbyes etc.
I went home to a very quiet house that afternoon, my daughter was away on her holidays with her dad. I just felt so lost and not looking forward to telling my dad about the appointment and consequently what had been found. He was at work until 6pm so I thought I'd go round and see him at 7. Time has never gone so slowly and I just wound myself up with the stupid thoughts of "what if?" over and over.
I phoned my daughter and tried to be as normal as possible (extremely hard for me I can assure you at the best of times!). She was excited about all the things she'd been up to that day and the upcoming events at the clubhouse that evening. I felt so sad inside for what Bethany might actually have to try and comprehend when the results were through. She is an extremely bright little girl and knows way too much about "sad stuff" for an 8 year old already that I decided I wasn't going to tell her anything until I had to. Her worst nightmares and dreams have been about losing me or her dad so why would I tell her about this when I had no answers? With that in mind it was best that I kept those who knew to a minimum as well as I really didn't have anything to tell did I?
Now to tell my dad! OH GOD! I felt so sick. As soon as I walked through their door I know they (my dad and step mum, Pam) knew something was up. I can't remember what I said I just know it came out more as a wail then the calm manner I'd envisaged and planned. Damn it! I'm way too emotional sometimes. More hugs followed and the telling off for not phoning him at work! Also, what shocked me most was how calm he was. It was definitely what I needed, my brain was just in overdrive and needed this calmness to make me see that all was fine. We would face whatever happened as a family and I would be supported throughout. At times I do try and face things on my own, I'm extremely stubborn and too independent for my own good. It's normally the wrong times too. A sense of relief washed over me and knew my next hurdle was just getting to results day without spontaneously combusting.
My last day as a student had arrived, a day that I'd been looking forward to for the last 4 years had come at last. What was supposed to be a day of celebrating achievement and an end to the stresses of "studentdom" had been marred by this bloody lump! Luckily as it was my last day those at work probably thought the tears that kept welling up in my eyes were due to the fact it was my last day and that the only four students on the course not to have got a job before qualifying was us four at Lancaster. It was quite a good shield to hide behind as it meant I didn't have to explain to everyone what was up. The truth is I just wanted to go home and be away from everyone, it's how I normally deal with events in my life. I hadn't slept all night, I was extremely sore and couldn't stop thinking about the worse case scenario. I followed Ashia around all day, she was like my comfort blanket. I really didn't care what anyone thought about that either. Like I've said before, she is great at distraction and helped me smile and giggle. I just hoped I hadn't spoilt her last day by being an emotional pain in the butt. I don't think I'll forget the last goodbye in Recovery when all four of us (I did tell my uni mates about the lump) and Pauline said our last goodbyes because we just all started crying. What a day!!
Tuesday was to be result day, only 6 days to go! Or so I thought!!
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!
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.
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.
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