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... :)