Life has a way of giving you a massive reality check at times though doesn't it?
On Friday I was told that Val Franklin had passed away, then on Sunday we found out that Rob Burrow had lost his battle against the disease. A stark reminder that at present there is only one winner when MND is involved.
I'm guessing that some of you reading this may well have known Val and so are fully aware of the lovely person she was. I first met her next to the 18th green at Rushcliffe Golf Club, as we waited for a group of ladies to finish a '72 holes in a day challenge'. Raising money for Stand Against MND. Val was one of the first people I'd met in person who also had MND. At that time I was visibly more advanced in my progression than Val, in my powered wheelchair and reliant on my ventilator. A casual observer would never have known we had the same illness.
Val would later tell me that she found that first meeting quite difficult. Looking at me was frightening, like seeing what the future could hold. To their enormous credit, Val and her husband Pete agreed to come over for a cup of tea to pick my brains about my journey. Nobody ever warns you about the mountains of admin that come with a degenerative disease, and if you don't keep up with it at your end you might not get the help you need. I'd been through a lot of it and I hope had a few useful tips.
Opening up and wanting that information takes immense courage. It shows in my view an acceptance of your circumstances, and a determination to make the most of the time you have. I'm so pleased that Val and I shared that outlook.
You would never have known what we were discussing based on the amount of laughter in the room. I was left with that familiar feeling of confusion as to why MND seems to attack such lovely people.
Val and her family became and remain stellar supporters of the charity, and I would frequently see them at the monthly golf club quizgo (highly recommended if you enjoy trivia and are of course willing to donate any winnings to a local charity...)* Val always had a smile and a chat whilst Pete always had a one liner at the ready.
*Not compulsory
Over time we saw each other less and less as we both found spending time out and about more challenging, until I heard the news last Friday. RIP Val, it was lovely to know you. All my love to the Franklin family.
A life with MND, particularly when you are integrated with patient communities on line and in person, means that losing people is tragically a frequent occurrence. A consistent reminder of your own proximity to death.
So how to react to such sobering news on such a regular basis? I remember I am alive. I have opportunity. I love. I laugh, I strive, I experience. In Vals honour, in Robs honour, for all the fallen warriors I've lost along the way,
I will live the most significant life I can muster.
Nothing else matters
1885 comments
Dedicated Nurse Loses $340K to Crypto Scam…
Held lives daily as a nurse, bought supplies myself, saved $340K for my kids’ dreams. ‘Sarah’ friended me, empathized, sold “secure” crypto at 15% monthly. Trusted and lost it all. Locked in supply closet, sank crying—convinced I’d betrayed my calling and my children’s future. Found JetWebHackers late-night. Messaged in despair. They acted fast, blockchain traced, full $340K back in weeks. Funds hit… clutched a chart, tears of relief flooding. They restored my faith. If scammed, hold on—JetWebHackers are true lifesavers. Thank you from my heart! God bless.
#JetWebHackers
EMAIL: jetwebhackers @gmail. com
WhatsApp: +1 (260) 228-9998
Führerschein, Personalausweis, Original Datenbank registrierter Reisepass, biometrischer (mazzini865docs@gmail.com) Reisepass, Führungszeugnis, behördliches Führungszeugnis, österreichischer Führerschein, LKW Führerschein Kosten, Führerscheinfragen, Probezeit Führerschein Österreich, internationaler Führerschein Österreich, Führungszeugnis beantragen Berlin, mit hochwertiger Ausstattung und Materialien China usw. Unser Team hat langjährige Erfahrung in verschiedenen Agenturen. Surge Dokumente erstellt von unseren Insidern. Wir bieten einen Service, der Ihnen hilft, Ihre Ziele zu erreichen, wir können Ihnen helfen. Führerscheinbescheinigung Typ 0, Führerschein Schweiz
Echte registrierte Reisepässe online kaufen
Echte Personalausweise online Echte registrierte Dokumente online kaufen (IELTS, IDP TOEFL, GMAT, ESOL, GRAAD, DIPLOMA,) Echte Aufenthaltserlaubnis online kaufen
Echte Staatsbürgerschaft online erhalten
Website: https://buylegitpassports.com/buy-germany-driving-license/
https://buylegitpassports.com/buy-canadian-passport-online/
EMAIL:mazzini865docs@gmail.com
Telegram https://t.me/flypassport
WhatsApp：+49 176 36223102
wechat_GorgeAvelson22
Telegramm: @Buylegitpassports1
It’s the programmed ATM card that can hack into all ATM machines. Its works with any currency and in any country where you might be living. It is programmed in a way that when a transaction is carried out with the card ,it can’t be traced. To make use of this card ,you need no account number or even pin of anyone. It’s simple because there is a manual attached that teaches usage ,and also gives more explanation concerning the card. So friends, its a new year and a new beginning. If you need funds to start up some business, pay up bills and loans or money to live a good life? Then you got to make this opportunity yours. Though it is illegal as you and I know ,since the government can‘t satisfy everyone’s needs, I have to do what I have to do, to get what I want and for my family to be happy and everyone at large to be the same ..Though this post is not for everybody, but for those who truly need change from a poor state to a wealthy life. A way to say happy new year to you and you out there. address once more is ( francoispinault807@gmail.com )
just days into the new year and my partner left me and my kids due to certain challenges. Life took a downturn from that point, I felt an unbearable emotional pain that got me hooked up to drugs to help with the pain, my life took a different dimension within hours .when I had an encounter with Dr Osazu love spell home he was able to bring a level ground between me and my husband and I have reunited with my kids. My home is back to what it used to be, thank you Dr Osazu and here is his email. osazu_spell@outlook.com
telegram -— https://t.me/solution59
First, I want to complement this page administrator for creating this platform for us to express our feelings. Herpes is a serious and recurring disease which can’t be cured through drugs or injections by the American doctors but the best way to deal with herpes is by taking natural herbs medicine from DR. Akhimien is the greatest herbalist doctor in the world and there are only a few American doctors that know about this herbal medicine from Dr Akhimien.. I have read about Dr Akhimien the great herbalist doctor from Africa who can cure disease with his powerful herbal medicine. For the people suffering from the following diseases, Herpes, HIV/Aids, Cancer, Also, Hepatitis, Diabetes, Hpv, Infections ETC should contact him for his herbal medicine because I am a living testimony and I was cured of herpes. Although, I sent him what he requested and he sent me his medicine through the UPS courier delivery company which I took for 3 weeks. today when I went for a test I tested herpes negative. You can reach him through his email {drakhiniemodion@gmail.com} or WhatsApp him at +2349133157031 Or website is https://drakhiniemodion.wixsite.com/drakhimien