Gearing up for the next visit – 20th July 20, 2011

Time is wearing on and we are getting closer to heading off to the Evelina once again, we will be leaving good old Kirkcaldy around 10am Friday morning, and stopping off in Sheffield overnight.

Route planned and ready to rumble… You may have read my previous posts about being on holiday, and we have learned this week the downside to this is you naturally come back from holiday with a mountain of washing, beside all the other bits and pieces you pick up whilst away !!! After Jane and I have managed to clear the backlog of laundry, not at all helped by the very un-sunny weather conditions we have quickly found ourselves in the position where we are re-packing hold-alls ready for the visit that is imminent – so busy, busy, busy there then.

Other than planning for the trip we have arranged for Rhys our eldest son (14) to go to his Grans to stay for the week, after lengthy discussions it transpires the thought of going to London and sitting in hospital foyers and waiting rooms did not sound too appealing to him (at his age I totally understand where he is coming from, especially so with the local team he plays football for having a couple of friendly games and training restarting after the summer break). Always has had a busy social calendar our Rhys.

So it will be Mum, Chloe, Robbie and I making the trip, at least this will free up leg space in the car, so we will all be comfortable.

Another upcoming event is a skydive, which my brother’s wife, and her sister are doing in aid of the Dystonia society on the 6^th August, a really touching gesture as (like us) neither of them had heard of Dystonia prior to Robbie’s diagnosis.

Most of the family regularly asks for updates on Robbie and how he is doing, and all have offered help in a variety of ways, this helps immensely and at least shows us they care.

One area I am finding really difficult at the moment is, as Robbie is getting bigger and taller (and he has taken a real stretch lately) some people (probably through their own ignorance of the condition) seem to be less tolerant of Robbie’s instability, and tend to scowl when he walks in front of them, holds them up or gets in their way, I am not the type of person to sit and explain to every person what is wrong with Robbie, but when it happens it makes your blood boil, and it does make you want to lash out, however thus far I have managed to keep the head and not lost it… If by any twist of cruel fate you have a child in a similar situation I am confident you will understand where I am coming from.

In a similar fashion, if people have concerns about the safety of their child whilst playing with Robbie, then maybe they shouldn’t put their child in that situation, people need to simply understand it is his movement that is affected mainly by Dystonia, not his mental, cognitive or emotional state.

I also feel it would be good to share with you all, there have now been a couple of occasions where younger children, standing in a queue somewhere with their parents have asked “What is wrong with him”, all much to their parents embarrassment, this is by no means offensive to me, and I am happy to explain to these kids what is wrong and what problems he has. If nothing else at least they are being honest and asking what they are truly thinking, as opposed to older children and adults who simply have a tendency to look at him through the corner of their eye, or simply ignore him.

In summary I think having re-read this, this part of the blog is a bit dark, and maybe I am just getting rid of some angst that has built up within me, but I think the main point I am trying to get across here is, I have no objections to being asked what is wrong with Robbie, and Robbie loves to talk about himself and he certainly doesn’t mind so if by chance you come across anyone is a similar position don’t be afraid to speak to them, and a smile from a stranger isn’t always a bad thing.

Okay I will step down from my soap-box now… Robbie has had a good week although sleeping is still a bit of an issue, other than that we are all good, roll on Friday and lets get those wagon trucks rolling…

Holidays Are Over 17th July 2011

Holidays are over, not at all... With my redundancy now being confirmed officially (I now have the written confirmation all commences from 20th July), there is still a nagging doubt at the back of my mind on the choice I have made, but hey it is done and I really need to start to relax about it. This is the first time in years I have been unemployed and it is all still a bit daunting.

On the positive side, it is great to have so much time on my hands for a change, without the burden of work related issues at the back of my mind, it is very easy to say work and stress do not affect your family life, but I believe we all know deep down this is not the case and stresses and strains at work do have effects on your mood both in and out of the workplace, it can be very difficult sometimes to switch off from work after 5.30pm some days. Now it is time to have some fun as we slowly (and it does feel very slowly) strive towards the 5 day visit to the Evelina for round 2 of Robbie's treatment.

Fun is the name of the game in the house at this time, quality time with your kids really is the best tonic in the world - 

Several questions are now beginning to come together on our questions sheet for the staff at the Evelina, having now had time to digest the purpose of the visit, we have come to realise  this is our opportunity to really probe on the issues we feel are foremost as part of Robbie's treatment, and no doubt there will still be areas we probably haven't even considered thus far... all will be updated in the blog as and when it arises next week. Some examples on questions so far have been set out below -

• Will Robbie be able to stop his medication after DBS? 
•  How long after op his he likely to be able to return to school?
• Splint – Is there any way this could ever be fixed or will he always need it?
• Will he be able to handle the car journey after the op, or are we better to break up the journey (650 miles)?
• Does / will he need to wear anything special to protect his head initially after the op?

etc etc etc... and so the list goes on....

I have also built a very comprehensive travel schedule (too much time on my hands maybe, I am never this organised), the plan is to head off on Friday 22nd so we are in plenty time for his appointments (and for me to take on the scary thought of driving in central London - possibly a shut your eyes and hope for the best situation here!)

The tests begin at Kings College Hospital initially then back to the Evelina for the 5 days... Hey it will be an adventure I keep telling myself !

Robbie is fully aware he is going back to the hospital, however doesn't seem upset or phased by the whole thing, as I may have mentioned earlier, I am not entirely convinced he has taken on board the extent of these tests, however it is our intention to share with Robbie what is going on, if he has any questions we will answer them as truthfully as we can, to be honest when I ponder this un-phased attitude maybe it is just the case Robbie has become accustomed to going to hospitals, and routinely accepts this as part of his life.

As far as Robbie and Chloe are concerned at this time, it is their holidays from school, a chance to play, run, fight and argue together as brother and sister should, their holiday certainly isn't over and when the weather allows (which in the UK can be very unpredictable) they are out in the garden causing as much mess and mayhem as possible, does this upset me, no, not in the slightest this is their own special safe area, where I know where they are, what they are up to, and they are only a few steps away should any of them need help, or fall over, friends are welcome to come play too - 

So as the say "Life is peachy" at this time, the thought of work, money etc firmly out of the way for a short time we can concentrate on living and enjoying life.

Overall, Robbie seems quite content just now, with only a few occasions where he has talked of "being sore" the sleep thing is still proving to be an issue, however now we are home from holiday, this is much easier to deal with as his room is quite safe, and he can get up and wander to the toilet etc till his hearts content, we know he will drop off eventually.... Yawn !

Holiday Day 5 12th July 2011

So far it has been a really great holiday, weather is good, spirits are good, and the whole family are enjoying themselves.

Robbie has a new found love in swimming, he seems to be really up for this activity and it seems water gives him more freedom of movement, and general confidence within himself. He is freely kicking his legs and paddling away like crazy, although he tends to twist around and end up swimming on his back with the dystonic movements he loves this activity and it really is the best exercise I have seen Robbie take in many many months... Whilst in the pool (which we have visited daily since arrival) he doesn't have any objection to being splashed, sitting under waterfalls or going through splash zones he is, quite simply having a ball.

One area I am going to touch on which I found a bit irritating, frustrating, and rather saddening was Robbie decided he wanted to go down the flume, and after struggling with me up several flights of stairs we eventually reached the top of the flume ready to go ride the waves as it were, we were met by a lifeguard who insisted only one person can ride, despite me explaining Robbie had problems with mobility, he absolutely refused to let the two of us ride together saying "It stops in a very shallow pool he will be all right" I advised but he has stability issues and going down the flume wasn't a problem but getting to his feet at the bottom would be, he still did not take on board the issues, and I decided it was best just to trawl back down the stairs and told Robbie he couldn't go down it because he couldn't swim very well yet. Was Robbie dissapointed, sure he was, but at the end of the day I also understood the lifeguard had a job to do and had rules and regulations which he could not break... we soon got over it and went and played at the water fountains instead. Again another sad reflection and example of the day to day things people with no knowledge of the condition can relate to, until it is presented to them on paper before their eyes.

The first day in the pool lasted about an hour, he came out and was very tired, he actually came home and slept on the couch for an hour, but after his nap woke up again full of beans.

Other than the pool, he is just loving dawdling around and about the chalet with his little sister, even better still his Uncle and cousins arrived yesterday which brought new company and playmates into the whole equation and has simply added to the drama and excitement for him.

Other than the swimming pool, Robbie has a great love for funfairs, and the scarier the rides the more he seems to enjoy... this is fine, however Dad is the biggest wimp going on these things, but I still smile on and do it... (Through gritted teeth most of the time) Mum's turn next time !

There are a few areas where there is some concern and I think it may be beneficial to share, these areas are the following.... 

• Eating seems to be becoming a bit more difficult for Robbie of late, he frequently does not want breakfast (this has been the case for a few weeks now) this seems to be simply down to Robbie not having much of an appetite first thing in the morning, also when he is eating his arm keeps going the wrong way and he finds it difficult to use a knife and fork and when he does, he has very poor coordination, he usually tends to use his fingers where possible.

• Moods can still be a bit of an issue, wheter these are as a result of frustration, or side effects of his medication it is still quite difficult to tell, sometimes it makes you feel like you are walking on eggshells to try and avert any outbursts, although to be fair this hasn't been as much of an issue during the holiday - possibly because there are so many distractions away from his usual day to day routine.

• Sleeping, Robbie still goes to bed without a fight, but again has the tendency to stay awake for hours after being bedded, he is up and down to the toilet, comes out of bed for drinks, back to the toilet and on and on it goes. that said he does drop off eventually.

The above "concern" areas have been fine though (plenty of work arounds for these especially so with little nurse Chloe on hand to assist), because the one important and heart warming thing is, Robbie has not mentioned any pain at all this week, it is absolutely fantastic to see this little guy get some relief from this..

We have spent a fair bit of time just looking, and thinking about the target goal setting areas we discussed whilst seeing the complex motor disorders team at the Evelina at our last visit... we will cover this in detail at our 5 day visit at the end of the month - my initial thoughts tend to sway between helping his arm and hand coordination to assist him better with clothing and eating himself, however other area of consideration is his ankle/foot as Robbie currently wears an orthotic splint to help correct his gait, and I am sure given the chance to lose this, would probably make Robbie much happier... basically I just see us approaching a junction in life ahead and we need to simply establish what route we will take... 

Holiday Day 1 8th July 2011

As you would expect Robbie and the rest of the family were up bright and breezy this morning, the thought of heading off on holiday had obviously been the catalyst for the whole family's early rise, shattering the peace and tranquillity of my usual early morning "me" time.

I like to think of this time as my escape from the world, I usually get up around 5am, and this allows me the time to wake up and have a coffee or three, reflect on the day that's been, and anticipate the day ahead. Normally I hate being alone and become very bored, very easily, as I need company however that early morning rise is the equivalent to a childs "golden time" at school and today there was none of that...

Chloe was first to rise, the kettle hadn't even boiled and in she waltzed "Are we going on holiday today" was the question with a bright grin that spread across her face, next little Robbie strutted in (about 10 minutes behind her) broadly beaming and visibly excited at the prospect of heading off on holiday. Next to arrive on the scene was Mum again even Jane seemed to have a new found cheery disposition (even for it being so early), eventually even Rhys our 14 year old son appeared on the scene and whilst he was being the "forever cool" teenager as you would expect, there was still that excited look on his face.

Robbie and the rest of the kids were raring to go, this was very apparent by the amount of times I was asked "are we going yet" and eventually after the car was packed with all the luggage eventually we set off, music playing and the whole family singing along to their favourite tunes which had been compiled earlier that week in anticipation of the two and a half hours journey to our destination.

The weather on the journey across was like four seasons in a day, and we went from brilliant sunshine right through to torrential rain, but we carried on regardless, and thankfully about half an hour before our destination the rain stopped and the sun came out, again further enhancing our holiday spirit.

We arrived at our destination, bang on check in time, so we quickly picked up our keys and wandered off to find our new home for the week, Mum, Robbie and Chloe decided they had sat in the car for long enough and decided to walk. We did have Robbie's chair, but he wanted to walk for a bit which was really encouraging... off they daundered while I headed back to the car to get our luggage to our destination. To my delight I arrived their before them so was able to get in and be hanging out the window watching for them coming, sure enough by the time I had put the kettle on, (got to get the priorities right) they appeared from around the corner and were quickly running to claim their new sleeping quarters, Robbie and Chloe quickly agree they were having the room with the big double bed, further enforcing my beleif these two have the strongest of sibling bonds and are like bread and butter the perfect combination.

Sleeping accommodation claimed they were very quick to head outside to scout their new surroundings, of course Dad tagged along in the background just keeping an eye from afar but the two of them were pretty much left to their own devices... (maybe should mention poor Mum was left behind to unpack all the family clothes. I am sure some of you who may be reading this are saying that sounds familiar, but we really do appreciate this although it may not show sometimes, we love her to bits and appreciate she is the glue that holds us all together x)

Robbie was having an absolute ball, running around, jumping, rolling around the grass, him and his sister were absolutely loving the moment, this was an absolute pleasure to behold, the thoughts of the weeks that lay ahead totally diminshed, the concerns on Dystonia at the back of my mind, this time is about having fun, forgetting our worries and switching off for a week.

The only time Robbie did struggle a bit today was at dinner, he wanted to sit in his chair to have his meal and we sat him at the table with his chair, there were a few issues with his arm coordination, where the slightest assistance was required, however we got there... and then the funniest thing happened we came out the restaurant and Mum and Chloe had popped into the shop to get some things, me and Robbie went and sat next to the park to wait, and lo and behold Robbie gave me a big cheesey smile and produced a dinner fork from down the side of his chair, it must have fallen down there he proclaimed !!! So if anyone is looking for the cutlery thief who "pinched" the fork - IT WAS ROBBIE :)

Happy days... Day 2 here we come...

Holiday Time Out 7th July 2011

At long last the holidays have come around !

Robbie has had a few really good days, albeit sleeping is becoming a real issue, sure he goes to bed no problem, he just seems to have issues actually dropping off to sleep. This seems to be becoming a familiar pattern, however is more apparent on days where the weather isn't so good and getting out and about the house isn't really an option. This could merely be a case of Robbie not burning enough energy off, but we are watching this closely.

Even better, we are all off on a week's holiday from tomorrow, this will be an ideal time to establish if there is any ongoing sleeping pattern problems developing as no doubt our days will be filled with entertainment, swimming, funfair's, kids clubs and lots of activities. This holiday will be a good distraction from the barrage of appointments we will have over the coming weeks and to be honest I think the whole family need the break... a bit of "us" time.

Personally I have made a tough choice at work, as Robbie needs more in the way of care and support over the months ahead, (and as my work was looking to make redundancies) I have after long and hard thought  decided to go down the voluntary redundancy route, hence from the 18th July I will be able to become a full time father and carer to my kids as my request has been accepted. 

In fairness to my work they tolerated me being off for over six months last year when the dark days of no diagnosis loomed over us, I did not want to go back to this situation again this year and when the chance of redundancy existed I could not miss the window of opportunity I had been presented with, to secure a lump sum to get us some together family time with no distractions. 

Sure I will miss the wages, sure I will miss the company but deep down I truly believe I have made the right choice for my family. Fingers crossed a few months from now I will be able to get back into work, however if there is one thing Dystonia has taught me, there is so much more to life than money and career. Your family and their health is paramount... 

When Robbie needs me I will be there, right by his side, I am sure some of you may have your own opinions on this strategy I have adopted but ultimately I am doing what I feel is right for me and my family at this time...

Get by with a little help from my friends July 2nd 2011

The clue is in the title, that old Beatles classic line pretty much sums up what this chapter of my blog is in relation to... Where can I get help or support ?

I think at some stage of this whole process, you will need to seek out support or advice (Certainly it has helped me immensely during some thought provoking and frankly scary moments) to be fair pre-diagnosis we were simply stumbling around in the dark asking only one question - Why ?

These were the worst times, however once diagnosis is given, believe it or not, things do get easier, you can research the condition and reach out to external sources for help and guidance... There is light at the end of the dark tunnel you have travelled down.

I fully appreciate this is probably a very much "personal feelings" type of subject as some like to keep things to themselves and deal with problems alone, however many others (self included) like to reach out and seek reassurance and advice from parents/carers who have been through a similar situation.... Personal thoughts are - It's good to share experience...

First and foremost Family are your closest allies (certainly they are in my situation anyway), Dystonia does not only affect the child with the condition but also those responsible for their care, along with any siblings... I am lucky in that as previously mentioned I have a very tight family, where we all help each other to get on.

Robbie's closest friend at this time is his little sister Chloe (4 Years Old)  who is always a little rock for him to lean on, she is always there for him, if he stumbles she is there to help him up, if he drops his fork she is the one who will retrieve it for him, if he needs help with the buttons on his shirt again Chloe is there... She really is a little wonder and for someone so young helps with Robbie's care and daily needs without a second thought.

Chloe and Robbie have a very tight bond, however I need to be very clear they are like any other brother and sister and have some very intense moments also, where they fight like cat and dog, but ultimately when all goes wrong they are united, and deep down there is the thought, and comfort of knowing these two will always be there for each other.

Other than direct family, there are a number of resources out there for you to look at or link up with, one particular group I am currently finding very useful and welcoming is via the social network site, facebook, and here I have found some real friends who have been through this whole process, and these people will discuss any concerns, questions or issues you may have, and point you in the direction or even give some reassuring comfort - The Evelina Childrens Hospital Deep Brain Stimulation Group can be found in the following link The Evelina Children's Hospital Deep Brain Stimulation Group alternatively type the group name in your facebook search bar.

Other than that there is the Dystonia society website at http://www.dystonia.org.uk/ another truly wonderful group of people, who also have a dedicated helpline on 08454586322 (Don't be afraid to use it, they are wonderful) They also carry a wealth of literature, leaflets etc which can be downloaded at any time (these can make explaining Dystonia to friends and relatives so much easier). They also have regional support groups in many areas across the UK.

In the event you want to ask anything on a more personal one to one level, I am happy to accept and try to help with any questions you may have by contacting me personally.

I will of course share any new resources I may come across over time, however I 100% recommend you drop by the above sites which are open to all...

Okay time to close off for the day, as it is breakfast time here... Kids have just woke up, and even better still the sun is shining... start of the Scottish school holidays and six weeks of uninterrupted fun to be had... :)

Do I suit short hair? 1st July 2011

Okay so where are we now, as the appointments start to filter through from the Evelina, and as Robbie seems to have forgotten about his dread of getting his hair shaved, a visit from the hairdresser seemed an ideal opportunity to "start the process" and get Robbie used to short hair. don't be misled his hair is normally quite short anyway, however just a bit shorter on this occasion...

Overall it wasn't too much of a shock to the system and he seems quite happy with his "really short" cut... At this time, the idea is the hairdresser comes back to us late August before we go down for Robbie to get the DBS implant, and again it will be cut short... only a bit shorter again next time round, we still don't envisage us being able to shave it at this stage, and if necessary the staff at the Evelina has advised the surgery team will shave it if necessary on the day.

Personally I think he looks dead smart with his short hair, (then again I am a forty something with virtually no hair) so I am probably not the person to seek advice from about hairdressing :)

As per my post earlier this week, in contrast to what I was saying about being moody, Robbie seems to have really picked up his spirits this week, and we currently have a happy, smiling and really good natured Robbie... Playing with his sister and the family pet "Fudge" .... Maybe the holiday build up spirit has hit us all as the whole family seem to have a spring in their step.... So all good there.

So far we have had the following itinerary confirmed with the Evelina, just waiting on the appointment at Kings College hospital (He is to attend this hospital for a Magstm appointment ? - As and when I get more info on this I will add to the blog) to come through now...

Appointments confirmed to date -
Mon 25th July - Admission to Savannah ward

Tues 26th July - 8.30am - 5.00pm
(am - speech assessments)
(pm - PET scan under general anasthetic)

Wed 27th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - MRI scan under general anasthetic)

Thur 28th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - goal setting)

Fri 29th July -  8.30am - 5.00pm
(am - neuropsychology)
(pm - meeting the surgeon)

Quite a busy week at the Evelina, however we have a holiday to look forward to first, (Robbie knows only 7 sleeps till this) and this seems to be a very good distraction to all of us...

As they say we will "cross these bridges" as we come to them, all in good time... I think personally as we are such a strong family unit we will get through this as we know we can all lean on each other at any time, and I dare say some of these sessions will make us all laugh, smile and maybe cry a little... but we will share it all as one and we will get there....