Wednesday, 26 November 2014

Wish 27- Donate unused medication and medical supplies



I feel so lucky to live in a country where I just click a button online when my medication needs renewing and my Mum pops off to the pharmacy, show my card and walks out with hundreds of pounds of drugs. I now get free prescriptions but for a while used the scheme where you pay just over £100 for a  year’s unlimited prescriptions. I know this is so different to lots of other countries and ill people have to sometimes choose between keeping the roof over their heads vs drugs to keep them alive or pain killers vs being able to have dinner. 

Nothing makes me feel guiltier than when my medication is changed and I have lots of used tablets still in their packaging to be thrown away. They are perfect and someone in the world would give anything to have free access to them.

This is why I’m featuring 3 charities which take unused medication and medical supplies (when my Nan died we had things like PEG tubes to donate) and distribute them to places where people are in need.

My wish is for people to donate any unused supplies and raise awareness of this amongst friends and family.

Wish 26- Use your computer space to help find a cure!

Ever wanted to help find a cure for Parkinson's, Huntingdon's, Alzheimer's diseases or some cancers? Now you can, even while your asleep!

This wish is inspired by a lady called Allison who is a friend of a friend. Alison is in her 50's, very positive and also is living with the terminal condition Multiple System Atrophy (MSA).

Allison's husband Nick found research going on into related conditions. This research isn't centred in a lab being done by scientists in white coats and goggles but rather a computer program that is researching the abnormal way proteins fold in these types of conditions (hence the folding bit). This is where you come in...

More people are needed to run this program, it's really simple providing you have enough computer space (I don't) and you don't need to sit with your computer while it runs. To quote Nick "The Folding@home project is open for anybody to join. The only requirement is that they have a reasonably modern computer that is powerful enough to run the simulations, but most (desktop) computers bought in the last five years or so should be okay. Laptops are not particularly suitable as one of the main ways that manufacturers use to extend battery life is by using lower power central processors and graphics systems. Having said that, higher-end and "desktop replacement" laptops are quite capable of running the folding simulations.".

They have added a fun and competitive element to it with having people work in teams and 'earning' points with a leaders board. You can join as an individual or as part of the team and I would love it if some My 30 Wishes supporters would join team Folding4MSA (team number 2508). Let's have Allison know lots of people are helping find a cure in her honour.

If you have any questions, don't ask me! Semi kidding here but Nick is the person to ask. He can be contacted on Folding4MSA@virginmedia.com and the website is http://folding.stanford.edu/

I will post Nicks explanation below, don't be put off if your not technically minded, I'm told it's very simple;



The Folding@home project is open for anybody to join. The only requirement is that they have a reasonably modern computer that is powerful enough to run the simulations, but most (desktop) computers bought in the last five years or so should be okay. Laptops are not particularly suitable as one of the main ways that manufacturers use to extend battery life is by using lower power central processors and graphics systems. Having said that, higher-end and "desktop replacement" laptops are quite capable of running the folding simulations.

All that is involved is for volunteers (Donors) to go to the website:

http://folding.stanford.edu/

and click on the "Download" button at the top. This will offer to download and install the most suitable "Client" for the machine. Clients are available for Windows, Apple Mac, Linux and now there is one that runs entirely within the Google Chrome browser.

Next, the Donor can choose a username (not required as they can fold under the "Anonymous" username) and/or a team to join. The teams are purely a bit of fun and to add a sense of community and competition to the project.

The Donor can then set the Client to use as much or as little of the computer's power as they wish, from only folding when the computer has been idle for a few minutes right up to using the full power of the machine. If the Client is set to use the full power the user may notice significant slowdown of other programs if they try to run them on the machine at the same time.

Finally the Donor just has to press the "Fold" button to set things off. It is as simple as that!

When installed, the Folding Client program connects to work allocation servers at Stanford University and downloads "Work Units". It then runs the simulation on the Work Units (which may take anything from a couple of hours to a few days depending on the client settings and the power of the computer) and returns the results to the servers at Stanford. The client then automatically downloads another work unit and so on.

Donors are allocated points for each Work Unit completed within the required time and if the Donor is a member of a team these points are also added to the Team's total. To maximise their points score the Donor can register for a "Passkey" which is a unique code for that Donor and this then enables "Quick Return Bonuses". These QRB's are extra points awarded for completing the Work Units faster than expected. The faster the Work Unit is completed the bigger the bonus.

As the simulations are quite compute-intensive the computers running them can get quite warm and use a bit more electricity than they would just using desktop programs, but this is normal. The QRB bonus system encourages Donors to leave their computers switched on and complete the simulations as quickly as possible in order to score the maximum points, hence the "Even while you sleep..." campaign.

Obviously we would love any new Donors to join team 2508, "Folding4MSA" but they are free to join any team they wish or even create their own. The name of the team actually has no bearing on what Work Units are assigned to the Donor's computer although the Donor can specify a preference in the Client program for the type of projects that they would like to work on. This, however, is purely a preference and the servers are free to allocate any suitable Work Units to any machine. Currently there are no Folding@home projects specifically targeted at MSA. Most projects are to do with Parkinson's, Huntingdon's and Alzheimer's diseases, as well as cancer, but the research is still relevant to MSA and there may be MSA-specific projects set up in the future.

Joining team 2508 is a way of the MSA community coming together with a team spirit to do what they can for research and raise awareness of the condition.

As part of my contribution to the MSA community I was intending to build a very powerful computer specifically for running the folding simulations and setting up a team for MSA. I built the computer (which is running very well) but before setting up a new team I decided to see if a team had been set up for MSA already and join that. Searching the Folding@home team list I found just one team for MSA, team 2508 which was then called "TEAM CURE MSA". The team itself was set up in about 2002 by an American scientist, engineer and artist called Ray Strand who was diagnosed with MSA about that time. Unfortunately Ray passed away in 2008 as a result of his MSA, and after that the team seemed to peter out. Through my research I managed to contact Ray's widow, Clare, who is a senior administrator at an American University and asked her if she would be agreeable to me taking over the team. She was delighted with the idea and although it appeared that Ray had taken the team administration login details to his grave, with the Clare's help and that of one of the Folding@home administrators I was able to get administrative control of the team. One of the first things that I did was to change the name of the team to "Folding4MSA" as I felt that it was "trendier" and easier to remember. This was one of the first teams set up in the Folding@home project and there are now over 220,000 teams (most of which are dormant unfortunately), so having team number 2508 carries quite a bit of kudos!

I have not managed to set up a homepage/website for the team at the moment, but that is next on the list of to-do's!




Wednesday, 19 November 2014

Describing severe M.E in poetry

I've always loved writing poems and they are mostly light hearted, infact I won the iPad I'm typing this on after writing a poem about a family car (you can read it here) for a competition. I find writing very therapeutic though and started blogging years before the word 'blog' came about. Mostly I would just write a line or two about what's happening as that's all I could manage but sometimes I would write a poem although it often felt like the poems wrote themselves.

Recently I came across one called 'Her', it jumped out at me as I wrote it when I was 17, I never thought I would need to add that 'she' has taken all my 20's away from me and I'm staring at the big 3-0 from bed. This is the poem;

"Her"

She dresses in black
From head to toe
And follows me around
Wherever I go

My heart still beats
My lungs still fill
But she stole my life
Against my will

Left is an empty shell
Vikki has now gone
All thanks to 'her'
This is going on to long

She haunted my childhood
She stole my teen years
Left me like a baby
Detaching me from peers

She has done all this
Over a long time
But strangely enough
She has committed no crime

For She is really just M.E.



This is another poem which almost wrote itself, I was around 18 at the time and someone had really annoyed me by saying my parents should just use tough love to cure me (yes tough love cures Neurological conditions....), it just flowed out in my desperation to explain what life was like (even though I didn't send it to the person). Sadly much applies today still.



'Can you imagine?'

Can you imagine waking up not able to move, not even a finger,
Wiggle a toe, move an arm or a leg?

Can you imagine laying there not able to move, but vomiting,
Being too scared to breathe, choking till your parents roll you over?

Can you imagine being so ill you can hear the voices of your parents but not know who they are?
Or hear English but not understand a single word?

Can you imagine going months on end without seeing anyone outside the family,
Not a single soul, not even a milkman or passerby?

Can you imagine being in so much pain that you just want to give up,
Feeling like there are thousands of hot pins sticking in you?

Can you imagine going years and years with a continuous migraine,
Not easing for a minute or a second of your life?

Can you imagine going over 8 months without sitting up or propped up,
Feeling so dizzy that you can't see straight?

Can you imagine feeling like you are moving, falling over backwards,
And at the same time rotating you sideways all the time?

Can you imagine going over a year without going downstairs in your own house,
Not seeing the living room, kitchen, garage, or garden?

Can you imagine life like this?

I don't need to imagine; after all, I live like this every single day.

Still think M.E. is just about feeling tired?

Monday, 17 November 2014

Thank you

Photobucket Pictures, Images and Photos


Thank you everyone who is helping make my wishes come true. I've still got a long way to go to tick off the list so please keep passing my blog around and asking friends to help. At the end of the week I will post an update on each wish so keep your eyes peeled.

Wish 24- Get a carbon monoxide alarm

We used to have detector dots by our boiler which change colour if carbon monoxide is being leaked, you have to check them to see if there is a leak (CO is colourless and odourless). My Dad got rid of them early 2008 and brought a £20 alarm instead (which came with a smoke alarm too) and didn't think too much of it.

I was at my best point in 2008 and Mum and Dad did a very rare thing and went away for a night (stocked my bedroom with everything I needed). Our alarm went off late at night, turns out our boiler was leaking CO. Symptoms of CO poisoning include vomiting, headaches, drowsiness. Guess what daily symptoms I have caused by my ME...

I would never of attributed symptoms to our boiler and gone to check the 'dots', seeing as carbon monoxide poisoning can be fatal it turned out to be the best £20 Dad had ever spent. The alarm sounded before I developed any problems and we all lived happily ever after. Would we of had that happy ever after if my Dad hadn't brought an alarm?

My wish is for 30 people to get an alarm if you don't already have one, I've seen suggestions of taking them on holiday with you after a brother and sister died on holiday. You can buy them for as little as £5 online (and don't forget to check the batteries in alarms regularly).

To learn more visit http://www.co-bealarmed.co.uk




Edit-Funnily enough but complete chance I have added this wish on the first day of CO awareness week!

Saturday, 15 November 2014

Could you be a fairy godmother?

I pushed myself really hard for a Post Pals project and am really not good at the moment, yet I'm conscious that time is really flying with my birthday rapidly approaching and I still have so much more wish awareness to raise!

I wondered if anyone could help by being a 'fairy godmother' please, taking on one of the wishes and trying to get people to grant the wish. For example posting the link about 'know the glow' (how a picture can save a child's life) on a parenting forum or asking a sewing group if they would make some Ispy bags. If you could be a fairy godmother I would be eternally grateful. Please shout on fb or on my email my30wishes@hotmail.com

Thank you to Diane and Laura who have been working as fairy godmothers.


Friday, 14 November 2014

Raising awareness with parents

There are thousands of parenting sites on the internet, from forums for parents, 'Mummy Bloggers' to Facebook groups connecting local families. Could anyone help My 30 Wishes please by sharing these links on any forums/blogs/groups?

Simply by posting them hopefully one less disabled child will be upset as they haven't been invited to a party or saving a child's life.

Please let me know if you post them :)


Know The Glow and save a child's life http://my30wishes.blogspot.co.uk/2014/08/wish-11-know-glow-and-save-childs-life.html

Read this short guide on what to say and not to say to parents who have lost a child
http://my30wishes.blogspot.co.uk/2014/08/wish-16-read-this-guide-to-supporting.html

Invite a child/family with special needs to a party http://my30wishes.blogspot.co.uk/2014/08/wish-21-invite-someone-with-special.html

Thank you!

Vikki

Thursday, 6 November 2014

Beach wheelchair clarification

My local paper is supporting My 30 Wishes which is fantastic and I'm very grateful. However I'm on the front page talking about my biggest wish- to raise funds for a beach wheelchair. Only it says it's to buy myself a chair so I can visit my favourite beach in Norfolk. I just wanted to clarify that the chair isn't for my personal use, it is for ANY disabled visitor to be able to enjoy the beach in the chair free of charge. I plan to turn it into a charity called 'Brenda's beach chair' (named after my Nan).

There's more about my wish for a chair Here and you can donate Here

Tuesday, 4 November 2014

Spread the Hope and a big Thank you

Hi Everyone, I'm sorry for not updating or replying to emails. I was in a bad patch ME wise anyway then completely over did it on Friday, I've only really woken up today!

I wanted to write some thank you's but first things first
SPREAD THE HOPE ITS NOW AVAILABLE FOR DOWNLOAD!!!

Wish 10- for people to download Spread the Hope charity single. Money is split between 4 charities including Post Pals and it has been written by my 'best bed friend' Jessica. She wrote the song during a 4 YEAR hospital admission with v.severe ME. It's an amazing achievement to have it released. Details are on the site http://spreadthehope.christmas

Secondly a big thank you to everyone who has been reading, sharing and wish granting! I had a lovely email after a donation from Sue which I will share soon, the childhood cancer awareness post is up to 745 reads which means 745 more people now know the signs and seeing as 10 children in the UK are diagnosed with cancer each day the reader might be the one to help them.

Thank you again to everyone and sorry for not replying to emails or sending thank you's- I will as soon as I can.

With love,

Vikki