Running partner for number 99

Run 85 completed.  I chose the Diggle-Dobcross-Scouthead loop, and at 6.7 miles it's good to get it over with as early as possible on the weekend.  When I got back from the run, Jake was asking about what is going to happen on run 99.  I haven't given it much thought to tell you the truth, except I am proposing to do the bare minimum in preparation for the Great North the day after.

However since noticing his picture in Running Fitness magazine, it seems Jake has taken a keen interest in the runs and asked "You know when you do your 99th run? Well can I run some of it with you?" When I said, yes, I would really like that, he replied "Well, I'm just considering it...for now"

I know I have spoken about many highs that this challenged has given me, however this must be up there with the best of them.  It'll be great to run back down the Boat Lane and meet Jake halfway down and run together for the last few hundred yards.  The last time we ran together was in the Great Manchester Mini Run at Man City's Stadium, I really enjoyed it - so I'm looking forward to running down the Boat Lane towards home with the pair of us in our JDRF vests.

Today's run is dedicated to Emily Brown

I'm dedicating today's run to Emily Brown.  Emily is 7 and was diagnosed in April 2009.  Emily lives in Amesbury, Wiltshire with her Mum Laura, Dad Iain and 7 year old sister Katie.

Laura told me:

"It is relentless. You never get a break from type 1 diabetes. You have to think about it constantly. As a parent of a six year old child with diabetes, I have had to learn how to inject my child, how to count the carbohydrate she eats at each meal and latterly how to use an insulin pump. I record everything my daughter eats, I test her blood sugar on average 12 times a day. I am constantly looking at all the information I have gathered and trying to interpret it to see how I can improve control of her blood sugars. I have two very big fears for my daughter."

"One is that she will suffer a severe hypo and become unconscious or worse. This fear is particularly prevalent overnight, so I wake up at 2am every night to test her blood sugar to ensure that she is safe. The second fear is that I may fail to control her blood sugars well enough to prevent her getting diabetes related complications in the future. I am very conscious that by the time my daughter is twenty she will have had diabetes for fifteen years. As a parent, how could I look my daughter in the eye if she developed eye or kidney problems at that young age, because I had not managed to control her diabetes to the best of my ability whilst she was younger? I am lucky in that I have a very supportive team at our local hospital who recognise my efforts and concerns and do their best to help. My daughter has been able to access an insulin pump and that has made a huge difference to the quality of her life and also to the control we manage to get, hopefully helping to reduce the likelihood of long term complications. However, even with this support I feel that as a family we face huge battles constantly. Her twin sister has had to learn to take a backseat at times as we are dealing with diabetes - changing infusion sets, testing for ketones, testing blood sugar, counting carbs, filling insulin cartridges. Her sister is constantly being asked to "wait a minute." Whilst my daughter with diabetes has had to deal with sitting at school and watching all her class mates eat cakes and she has had to bring hers home so that it can be carb counted and she has the right amount of insulin for it. She has had to come to terms with having daily injections, then infusion sets put in. She has to deal with feeling rotten every time her blood sugars go out of range (which sadly is quite often, despite a tremendous amount of effort being put in). She also has to put up with being woken at night and force fed glucose tablets if she is hypo or having a new infusion set inserted if there appear to be problems with her pump. I am constantly on call."

Laura adds:
"I receive on average two or three phone calls a week from school with diabetes related issues that I need to deal with. I also end up having to go into the school on a regular basis to deal with problems that have arisen. This makes it very difficult for me to work. It is nearly impossible to get a break from diabetes as very few people are willing to look after my daughter due to the extra responsibility of having to deal with her diabetes. For instance recently my daughter asked my mother "Nanny, when can we come to your house for a sleepover again?" To which my mother replied "You can't because I don't know how to work your insulin pump." My daughter is a bright, sensitive, kind and sociable six year old and I wish more than anything that she didn't have to face the challenges of living with diabetes."

Read Laura's entry on the JDRF 1 Campaign scrapbook:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79§ionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=14&profile=155


I'm proud to dedicate today's run to Emily and her family.  Today Pat and I are are running the "Trombone Trail" - Full details on this run later...

Today's run is dedicated to Charlie Howard

One of the things that I have really enjoyed during the challenge is to be able to raise awareness of fellow families with children living with Type 1.  One of those is young Charlie Howard, who I am dedicating today's run to.

Lucy Howard, Charlie's Mum told me:

"Charlie was diagnosed in January 2010 at the age of 13 months following 2 trips to our out of hours Dr who told us he had a stomach bug. We insisted on taking him to hospital where he was diagnosed within 10 minutes of arriving. After 2 nights in PICU and a further 10 days in hospital we were allowed home on the basis we could ring or return to hospital if necessary. Charlie was very lucky as he received an insulin pump a week after diagnosis. The pump has made a huge difference to Charlie's blood sugar levels as we can tailor it to meet his needs. That's not to say that every day is easy - he's recently starting having tantrums which makes hypos more tricky to spot but is reassuring in that he's just like any other 2 year old! We all get involved in looking after Charlie, our daughter Kate is 4 and she's a dab hand at reading the meters and telling me if he's high or low. Having a child with Type 1 diabetes does change life for the whole family but we try to do as much as anyone, we just have to plan things carefully. Meeting other families in the same situation has been very helpful, we can share experiences with people who really understand."

Read Lucy's entry on the JDRF 1 Campaign scrapbook:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79&sectionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=2&profile=308

Today's run: 6.4 miles

Today's run is dedicated to Imogen Keywood

I'd like to dedicate today's run to young Imogen Keywood.

Imogen's Mum, Teresa told the JDRF 1 Campaign :

"My baby daughter was diagnosed with type 1 at just 15 months old, and it has totally changed our lives. There is a huge amount of ignorance when it comes to type 1, and nobody understands how dangerous type 1 is and the difficulties that you come up against on a daily basis. Having children is a huge responsibility in itself, but having a child who has type 1, you are faced with fears and worries daily that most people do not ever have deal with in their whole life. Insulin injections just keep type 1 diabetics, it does not cure this dreadful life threatening illness.  There needs to be more government funding for type 1, so that there can be research into finding 1 the prevention to type 1, and 2 the cure. All type 1 should be entitled to have the choice of an Insulin Pump that tightens control, and thus gives type 1 sufferers a better, healthier and longer future. An Insulin pump should be standard to all type 1 sufferers. There should also be more awareness. Although Type 1 is rare in children under the age of 4, it is becoming and more frequent illness with more children being diagnosed at a younger age."

Imogen is now 2 and a half years old and I'm proud to dedicate today's run to both Imogen and her family.

Read the scrapbook entry at:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79&sectionTitle=Type+1+scrapbook+gallery+-+how+type+1+affects+other+people's+liv&page=12&profile=172

Today's run - 6.4 miles
Yesterday's run - 7 miles

The Half Way Mark

That's 50 done.  It feels good to be able to sit down, take stock and realise that I'm now officially over the half-way mark - or will be after tomorrow's run.

I took advantage of the good weather by running one of my favourite routes - Start at the wonderful Diggle Hotel (Best pint in Saddleworth) up to Standedge Cutting and up to the Trig Point above Castleshaw, round the reservoirs and back home via the boat lane.  I knew that Carolyn was planning a surprise, but I was not expecting a cheering station at the end, complete with JDRF balloons, followed by a nice carb-heavy lunch.  The promised massage was later at 4pm, so I have to take my hat of to Carolyn for making the run one to remember.

Although a variety of my running partners were unable to join me (Pat - Cambridge Folk Festival, Colin - Injured his calf, Gaz - Fractured his wrist), no matter - It was a run I had been looking forward to. 

Spurred on by the good weather and sense of occasion I wore my faithful team Pingu JDRF Vest and set off.  On the decent from the top of the boat lane I was greeted by Carolyn, Jo Taylor and her son Ned cheering and clapping as they came into view.  Again, not wanting to labour the point but I was really touched and have to add here how much a good support Carolyn has been since the challenge started.

Energy boosting cake...

I've just come back from the sports massage that took place at Body and Mind in Mossley and it appears that my leg muscles were not in the knotty mess I presumed they would be in.  It was good and I'll go again before the challenge is over.  They've got a great set up and really friendly, professional staff - there is even a loyalty scheme in place, so I'd recommend it.  Their website is http://www.bmtcentre.co.uk/

I dedicate today's run to Ryan Welton (see previous post).

It just leaves me to say a big thank you to everyone who has supported me, Jon and Louisa at JDRF, Those who donated to the charity, donated free running gear and discounts, joined me on the runs and offered encouragement - it's very much appreciated and will keep me going through the next 50 runs.

Today's run - 7.6 miles

Today's run is dedicated to Ryan Welton

Well, the half-way mark is here.  I'm going to enjoy today's run because:

1) I'm heading out around 11:30, and there was no getting up at silly o'clock today - it is a Saturday, after all...and the sun is shining so to be running on the fells looking out over cattleshaw is going to be great.

2) It's good to have 50% of the challenge under my belt, and I can start counting down until the Great North Run.

3) I'm feeling the benefits of the daily 10K's - Running further distances, motivated to do more, and enjoying work during challenging times.  I've lost a few pounds too, which needed to happen.

4) Carolyn has booked me in for a sports massage this afternoon, and everyone I know has been full of support, encouraging me and donating to the charity.

5) That today's run is going to be dedicated to Sarah Brown's son Ryan.  Sarah works with me, although she is based in Southend and we have yet to meet up in person she's been a great support ever since Jake was diagnosed with T1.  Sarah does a lot of campaigning and has introduced me to other areas of support such as Diabetes Power.  Thanks Sarah for all your advice and I'm hoping to be in Southend soon so I can thank you in person.  I'm proud to dedicate my 50th run to your son Ryan.

Sarah tell's Ryan's story:

"I will never forget the day those three words ‘Type 1 Diabetes’ entered our lives.  It was August 2008, the height of summer, when my son, Ryan, fell ill.  He had seemed to be the picture of health albeit drinking more than normal but only to be expected with hot summer days spent on the beach. He liked to sleep during the day, but what teenager doesn’t? Mood swings were common, just teenage traits surely? It wasn’t until he fell extremely sick with vomiting and extreme weakness that we took him to see the doctor who immediately admitted him to hospital as an emergency after doing a simple urine test.  The rest was just a blur.....  ketoacidosis.... type 1 diabetes.... blood tests...... needles.... insulin.....  It was simply the worst and most frightening day of our lives!

Since then Ryan has learned to cope with several daily finger prick tests and injecting himself with insulin and I feel as if I have become an expert of the condition after reading all the literature I possibly can! He has involved his friends, giving them knowledge on his condition so they can support him in his daily life.

Our latest challenge is obtaining an insulin pump for Ryan.  This will put an end to the several injections a day he has to endure and will mean he will have a pump attached to him with a constant delivery of insulin to keep his sugar levels at a more stable level.  We have to wait until the end of the year to see if he will be granted one but, as with many things, it is all down to funding and, at present, this is not available so we shall have to wait patiently..... or take our fight to the PCT for something that should be readily available to give Ryan a better quality of life. 

Since Ryan's diagnosis, I have built a large support network of friends on the internet, all of whom either have Type 1 Diabetes or are parents of a child with diabetes.  Without these people, I would have found it even harder to cope with the many ups and downs that looking after and supporting my son brings.

Tom only wanted a couple of paragraphs and I feel I have gone on quite long enough now but, when it comes to our lives with diabetes, I could truly talk for England!  I just want to say a huge 'thank you' to Tom for this incredible challenge he has taken on to help raise funds for vital research into, hopefully one day, finding the cure for Type 1 Diabetes and is a great honour that he is dedicating run number 50 to my dear son, Ryan."

Look out for the second blog post later with details of today's milestone run

Today's run is dedicated to Dylan Dawe

Today's run is dedicated to young Dylan Dawe, who is approaching his 4th birthday, he was just 13 months old when he was diagnosed with Type 1 Diabetes.

Dylan's Mum Sabrina Dawe emailed me a couple of weeks ago:

"Well done on your amazing challenge- had already had a look at your blog, it's great.

I did the marathon this year myself for JDRF, so I know how difficult it must be running every day.

Best of luck with it all and thank you for dedicating one of the runs to Dylan". 

Thanks for the encouragement, Sabrina, and proud to dedicate today's run to Dylan.

Read Sabrina's entry on the JDRF 1 Campaign Scrapbook:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79&sectionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=11&profile=180

Today's run - 6.4 miles

Today's run is dedicated to Loraine Sheils

Jake and I are in Liphook for a few days, staying with my Mum and Dad whilst Carolyn is "away with the girls".  A long journey yesterday, hampered by all cliches regarding the M25 becoming reality.  The area seems to alter every time we visit.  The biggest of these is the new A3 Tunnel at Hindhead, the famous bottle-neck that caused countless delays for commuters and holiday makers travelling between London and Portsmouth over the years.  This will come to an end next week when the tunnel opens, however I can't help feeling annoyed (along with my fellow drivers yesterday evening) that the tunnel has been ready for over 3 weeks, and on the busiest Friday of the year it remained closed.  It appears this is due to waiting for the current Minister for Transport to find a window in his diary to commence the pomp to snip the tape.

I'd like to thank my Mum and Dad for the generous donation they made last night on my justgiving site - this really gives me a boost and helps with the confidence they have in me to reach the 100 - thanks again!

Jake opted to sleep with me last night, and getting up early for the run today I thought I had managed to get away without waking him up.  Not so.  I heard a small voice from behind the door as I tip-toed down the stairs.  "Dad - my legs are aching...".   A quick check of his blood sugar reading confirmed this and he was soon playing on his DS whilst taking a glug of Lucozade and a couple of biscuits.  Job done.

I did the route I worked out yesterday, taking in old familiar sights of the A3, Hammer Vale - passing the Prince of Wales pub, where I used to drink way too much of the lovely Butser Ale, and the strong HSB.  I made my way back to Lynchmere, over past Highfield School and back around the village and my old schools.  A trip down memory lane if ever there was one.

Elizabeth Sheils has asked that I dedicate today's run to her Mum, Loraine which I am happy to do - in fact today's run will be dedicated to both of them.

Here is Elizabeth's email to me regarding the dedication:

 "I have had type 1 since the age of 5 (and I am 21 now!) The diabetes technologies and knowledge back in 1995 were not as they are today. I went onto a mixed insulin syringe regime and only go introduced to carbohydrate counting and multiple daily injections when I reached secondary school. I have just recently gone on pump the beginning of this year!

Being diagnosed so young I really had no idea what was going on, which meant my mum had to fully look after me. During the early months of my type 1 I had panic attacks in the night which we were told was my bodies way of dealing with the stress and confusion. Being 5 years old I didn’t really understand why people were trying to put needles into me and say I had to eat at certain times without sweets.  I do remember my mum, Loraine Sheils, staying with me in hospital overnight which made me feel a lot less anxious. Being the first type 1 in my primary school caused a lot of concern for the teachers. It meant my mum had to be on call just in case my blood sugar was too high or too low making it impossible to have paid employment. She was and still is always there for me.

My mum has done a wonderful job in supporting me these past  16 years. I haven’t had much support from friends during my school years and my family were reluctant to get too involved. Therefore she has been my support system without having anyone herself to lean on. She has given me the guidance and confidence to manage my diabetes and has always taught me not to let it get in the way of my life. I have learnt the skills to be able to manage my type 1 to the best of my ability whilst working towards all my other goals in life.

I am passionate about trying to improve the lives of those with type 1 and hope to raise as much awareness as I can. I have been working with JDRF for the past three years as a T1 Youth Ambassador and I am currently working with a clinical psychologist in a diabetes centre as part of my psychology degree. I know I never would have achieved all the things I have without the ongoing support of my mum. "

Read Elizabeth's JDRF 1 Campaign Scrapbook entry:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79&sectionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=4&profile=286

Thanks Elizabeth - today's run is for you and Loraine

Run 40 is dedicated to Finlay Bloxham

That's 40 in 40 so far.  I treated myself this morning to running the route with the least hills, the Diggle-Friezland road route that is 6.4 miles - I know how to enjoy myself don't I?  This milestone run is dedicated to young Finlay Bloxham, who is just coming up to his first anniversary since being diagnosed with type 1.

Louise Bloxham, Finlay's Mum told me:

"Finlay is 5. His diagnosis date is 24th July 2010 so coming up to our first anniversary.  He will be so excited when I tell him about this dedication! We are doing the Bristol JDRF walk in September and have raised so far just over £900. Not as exhausting as your endeavours but I think 4.5 miles will be a stretch for little legs! 

Louise told JDRF's "1 Campaign" last year:

"Finlay's diagnosis came on the first day of the summer holidays last year. Looking after his diabetes requires constant vigilance, it never goes away, even when he's at school I am thinking about it and hoping he is not high or hypo. I have to weigh his food and work out the carbohydrates and give him his insulin injection. Everything requires planning, even going round to his friend's house for tea presents difficulties. It's hard on the whole family.

Read Louise's JDRF 1 Campaign scrapbook entry:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?section=79&sectionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=4&profile=284

http://www.jdrf1campaign.org.uk/

NICE decide Lucentis is not an effective use of NHS resources - JDRF News

A new treatment for visual impairment caused by diabetic macular oedema (DMO) has this week been added to the list of medicines that are not considered an ‘effective use of NHS resources’. NICE has concluded that it does not recommend Lucentis® (ranibizumab) for use within the NHS in England and Wales for the treatment of visual impairment due to Diabetic Macular Oedema (DMO).

JDRF believes it is vital that patients with diabetic macular oedema receive safe and effective treatments for their condition. This is why we supported the early development of Lucentis through our Innovative Grant programme. Further collaboration with Genentech, a biotech company based in San Francisco, and Johns Hopkins Medical School, enabled clinical research to help reveal the full therapeutic benefit of the drug for people with type 1 diabetes.
DMO is caused by swelling in the centre of the retina – the light-sensitive area at the back of the eye that provides detailed vision. The swelling results from damage to small blood vessels caused by years of elevated blood sugar levels, which –even with the best possible treatment – are hard to avoid entirely when living with type 1 diabetes.
The standard treatment for DMO has been the same for the last 25 years – laser treatment to destroy areas of abnormal blood vessel growth at the back of the eye. However this treatment does not improve vision, it only slows the progression of the condition.
Therefore the decision by the National Institute for Health and Clinical Excellence (NICE) to not recommend the drug ranibizumab (marketed as Lucentis) for use within the NHS to treat DMO is disappointing. Current research indicates that ranibizumab is highly effective in treating DMO and, significantly, that it meets an unmet need for patients who do not respond well to the current standard laser treatment.
Lucentis has been approved in the USA for the treatment of DMO, and is also approved in Europe for treating another eye condition, wet age-related macular degeneration. The fact that ranibizumab has not been NICE approved for the treatment of visual impairment caused by diabetic macular oedema means that clinicians may be forced to turn to unlicensed and therefore untested alternatives, putting patients’ sight at risk.

If left untreated, diabetic macular oedema can lead to vision loss. The condition affects approximately 28% of people who have had diabetes for at least 20 years. The standard treatment of this condition has been the same for the last 25 years – laser treatment to destroy areas of abnormal blood vessel growth at the back of the eye. However, despite reducing the progression of the condition, this treatment does not improve vision.
JDRF campaigns to raise awareness of type 1 diabetes, informing key decision makers about the issues people living with the condition face. If you haven't already, get involved with JDRF's 1 Campaign. Together we can lobby the Government to invest more money in medical research and to improve access to treatments.