Our Dear Friend Simon Waller In The Uk Has Passed

[RichGotsPots]

I'm not sure if many of you knew Simon, He used to be an ice skater before Hyper Pots set in. He had EDS, Crohn's and some other issues. He traveled all the way from the UK for treatment at Mayo in Arizona. He got a lot of help there and when he came back he was very optimistic. But he got meningitis and passed away a few days ago. May he RIP!

I hope that doctors will come to realize how Dysautonomia weaken the immune system and treat us all with that in mind. I caught a bad Pneumonia this time last year as many of you may remember and I fought very hard. It's imperative that doctors keep our weak immune systems in mind and treat use cautiously and swiftly.

[k&ajsmom]

I was just reading about Simon. So sad to hear he lost his fight.,especially so young. He was truly a remarkable, courageous person, and I hope everyone will keep his spirit alive with his story and spirit. Rip and prayers of strength for his family and friends

[anna]

Yet another EDS/POTSie is taken away sooo sad.

[rach73]

Hi

a tribute page has been set up on facebook for Simon. Here is the link

https://www.facebook.com/?ref=tn_tnmn#!/pages/The-Simon-Waller-Tribute-Page/327591434023507

A very sad day.

Rach

[corina]

I'm so sorry to hear this. Do any of you know if he was a member here at DINET?

[Monstrosity]

RIP

[sue1234]

I'm like Corina...was he on this forum? If so, what was his username? I can identify people by their username.

Sad to hear of his passing.

[Rachel]

I'm sorry to hear that Simon has died. That's really sad.

To my knowledge, he wasn't a member here on the DINET forum. I think he was involved in other dysautonomia groups.

[tinkerbella]

Very Sad, may Simon rest in peace and have taught doctors something about POTS while here on earth. Prayers to all the family.

[RichGotsPots]

This is just a little more info about him that a friend of mine wrote:

"So sad to hear of the passing of my friend Simon Waller today. Simon was once an Olympic level competitive ice skater from the UK. Despite being in outstanding physical shape, he developed POTS as a result of an autoimmune disease, just like I did. He had Crohn's. He was extremely knowledgeable about POTS and autoimmune conditions, and even earned the nickname Dr. House from the other POTS patients. He could not find decent medical care in the UK, so he spent his live savings and then some to come to Mayo Clinic in Arizona last year. Many other patients and friends donated to help pay for his trip, because we all wanted him to have a chance to ice skate again and just live his life like a normal young man.

I am devastated by this loss. But at the same time, I am furious. How many doctors in the UK told Simon that nothing was wrong, or that he was just being a hypochondriac? How many doctors have told all of us who have POTS that if we just get a little exercise, we'll be fine? There are doctors out there right now who are telling the media that POTS is caused by a lack of exercise. I wish that were true, because then it would be easy to fix all of us. But in reality, many people with POTS, like Simon, have POTS as a result of a serious underlying heath condition that causes autonomic neuropathy. It's time the medical community stops pretending that POTS is no big deal and starts recognizing that POTS can be caused by underlying conditions that need to be taken seriously and treated aggressively. I don't want to lose any more of my online POTS friends due to ignorance and poor medical treatment."

[rach73]

Hi,

Simon did not die from POTS. Simon contracted meningitis and due to very serious health problems including POTS and Crohns his immune system was compromised. Unfortunately his body was too weak to fight off the meningitis.

I am posting this as I do not want people believing that Pots killed simon. His medical history was very complex hence why he sought help from the USA.

I dont know whether POTS has caused deaths or not. But I do not want people worrying unecessarily when hearing of Simons passing.

Rach

[arizona girl]

Thank you Rach for posting the true cause of his death. Pots is a syndrome that can be caused by many conditions, sadly some of them are life threatening, if left on treated.

This is why it is always important to rule out as many causes as possible.

I have a compromised immune system along with autoimmune diseases that damaged my small fiber nerves causing autonomic dysfunction. We are now treating my complex medical conditions and I have had some improvement in my hyper pots. Sometimes small fiber nerves can recover depending on cause. I will have to be on treatment for life however, as what I have has no cures yet. There are good treatments available though to help me manage my diseases.

With a suppressed immune system and the type of autoimmune diseases simon had a disease like meningitis could have easily become unsurmountable. It sadden's me to know that had, he had earlier and/or a proper diagnosis he may have survived this. I hope his friends and family take up his cause and educate where the failures were in his case.

I urge all of you to rule out a cause seriously. I won't lie getting a proper diagnosis was difficult and took many years. That is why in spite of managing my illnesses, I am still giving my time to Dinet. Dinet helped me figure out what was wrong. If I can help one person get there faster then I, it would make my struggles worth it. Take care all!

[RichGotsPots]

Simon didn't die from POTS but I do believe it weakens us to fight off other common illnesses. Its just like someone with COPD wouldn't want to catch pneumonia. COPD doesn't cause pneumonia but it does cause fluid in the lungs which can make the body more susceptible to pneumonia and also the lungs weaker to fight it. POTS takes the energy out of a lot of us especially severe cases. Many of us have so many issues related to different organ, lungs, GI, liver, heart, you name it and one of us have it..

[rach73]

Here is the eulogy that was read at Simons funeral for thise who dont do facebook

My husband Adam was given the incredible honour of being asked by Simons mum, Scott to write and read the Eulogy for Simons service, we would all like to share it with you

Simon

Who was Simon Waller ?

Simon was so many things to so many people, it is difficult to find the words to describe who he was and the loss we all feel.

He was a loving son to Scott, a doting brother to Adam and Lawrie.

He was a dear nephew and grandson and he loved his Papa very much.

As a dear and cherished friend he was loved by us all.

Simon was an amazing skater, whose talent and dedication could have taken him to the very top of his sport. When Simon started his skating career his talent and determination was quickly recognised by his peers as someone to watch for the future. He learned so much from his coach, Jon who carefully nurtured Simons talent and helped to shape the skater and coach that Simon was to become.

Simon's dream was to compete at the Olympics and in pursuit of that dream he travelled extensively, competing and training in many different countries. Simon spent time in the US training with Lorna Brown, who recognised his amazing talent and much to Scott's pride and delight, likened him to the next Robin Cousins. At his peak, Simon truly was brilliant, not only from a technical perspective, but he also performed with such passion and artistry that he took your breath away.

Eventually Simon settled in Australia before his health prevented him from competing at the highest level.

Simon loved living in Australia and often spoke of the great times he had with friends and family in Perth. In particular he would often speak of the wonderful times he spent with Lawrie and Scott when they visited.

Simon's focus switched to coaching and he quickly established himself as a brilliant coach. His natural affinity for the sport and his enthusiasm and knowledge of physiology and technique made him a favourite with his students of all ages, from elite skaters to beginners alike.

It was through skating that Simon came into our lives. He was Emily and Kate's first coach before leaving for Australia, but he stayed in touch with the girls through Facebook and continued to provide advice and encouragement. When he returned from Australia he quickly became a part of our lives and over time became like a big brother to Emily and Kate. It was only then that we discovered his love of experimental cooking and his ability to create an explosion in the kitchen from seemingly innocuous ingredients

Skating was only one part of who Simon was. As his health deteriorated and prevented him from being physically able to partake in his sport, Simon never gave up hope. He relied increasingly on his friends and family for support and after treatment in Arizona, he was particularly grateful for the loving care that his brother Adam gave him when he returned to the UK.


Simon was a gifted scholar who achieved 12 GCSE's at school and 4 A levels which were self taught. He was offered scholarships at Brunel University but chose to study an Open University degree which offered him the flexibility to train. Simon realised the importance of education and pushed his students to follow an academic path as well as aspiring to skating success.

Simon had an inquisitive mind and spent a lot of time online with friends or researching his conditions. He was determined to understand everything about possible treatments to enable him to regain his dream. He never gave up and his involvement in many of the online medical forums earned him the nickname of Dr House, or Dr Simon, something Simon took great pleasure from...

He helped so many people through his work online and touched so many lives. Far more than anyone realised. The number of responses and messages of support that have been sent since his passing has been phenomenal.

Simon was a great inspiration to so many people. He was kind, generous and thoughtful and would always think of others before himself.

When Simon's health really got bad, he was still determined to spend time with those he loved. He used the Spoon Theory to explain to us that the spoons represented the energy he had for that day. On an average day he maybe had 8 spoons to use and he would apportion these across the day. For example, going for a coffee, he'd use 1 spoon getting dressed, 1 spoon for the journey, 2 walking to the coffee shop, 2 for chatting , 1 for the journey home and 1 left for the rest of the day.

Knowing he was willing to use his spoons to spend time with us was a precious gift.

For anyone else, what Simon had to deal with would have been too much to bear, but Simon was special, he never gave up hope and anyone who got to know the real Simon loved him.

Simon was never defined by his illness, but believed in living his life to the full and with "No Ordinary Moments". His mantra was "In pursuit of your passion, be neither timid nor afraid" and Simon lived his life by this.

Simon was very close to his mum, Scott, to whom he owed so much, including his great love of the arts. He loved all forms of performance art and enriched the lives of everyone around him through his constant involvement and appreciation.

He had a great love of language and poetry and would often express himself and his feelings through the written word.

He was an eloquent and articulate young man with a wicked sense of humour. He loved comedy and would spend endless hours watching standup on his laptop.

He loved to tease and bamboozle his friends and family with long words and was not averse to inventing new ones. Particularly if he was losing at Scrabble....

"Huggles" was a favourite word, which irritated Emily so much that she bought him a dictionary and went to great lengths to point out that it wasn't a real word.

Simon's philosophy was based on love, forgiveness and second chances. He didn't judge others and always looked for the best in a person. He pushed all those he knew to believe in themselves and to be the best that they could be and inspired those around him.

Simon was always generous and thoughtful and always had a knack for buying exactly the right gift and saying the exactly right thing.

So who was Simon Waller ?

Simon was a fiercely independent young man who had such great potential, he lived his life to the full and achieved so much in his 25 years. We all have our precious memories of Simon and he would want us all to remember him as the talented and vibrant young man who skated with a passion and flew across the ice, free of pain and full of joy.

As a gentle and loving soul, he was a light that burned brightly and was taken away from us all far too soon.

Lawrie's analogy for Simon is the story of The Snowman. It is a perfect fit for Simon on so many levels. He came for a short while, took us on an incredible journey but when it was time to go, he melted away to leave us with the wonderful memories that we will all cherish forever.

This is the link to his tribute page https://www.facebook.com/#!/pages/The-Simon-Waller-Tribute-Page/327591434023507?fref=ts

Thanks

Rach