It’s been a little while since my last blog, I would love to write more but there have been so many things going on that it has been difficult to find the time. Which is a wonderful problem to have for someone in my position, and something that I am grateful for. It’s very important to me to stay in touch with you all and so I have found a few hours to put together an update.
So what have I been working on I hear you ask… The first thing to tell you about is probably the most serious. I’ve been in discussions with my various medical teams about whether or not I should have a tracheostomy. For those of you who don’t know what that is, it’s a procedure which places a ventilation tube directly into my trachea (windpipe), bypassing my mouth and nasal passages.
Why now? Well, my mouth and nasal passages don’t really do anything of use anymore. I can’t eat, drink, speak or express anything. In fact they pose more of a risk than anything. Since I can’t control the production of my saliva anymore or manage it in my mouth: there is a real risk that I could aspirate saliva and develop a life threatening chest infection as a result. So bypassing that area definitely seems to have some benefits.
However, actually undergoing a tracheostomy procedure comes with its own risks, particularly recovery. It’s also necessary to think about the reality of life with a trachy, which is not simple for me or my care team. We ultimately came to the decision that a trachy is not for me. We are going to be more proactive in the management of my saliva and stay on my non-invasive ventilation set up.
This has all been quite difficult for me mentally. When I began my MND journey I was very honest with myself, I accepted the decline I was going to experience and researched the interventions which would be available to me. Did I want to live with:
- A Ventilator - Yes
- A Wheelchair - Yes
- Hoists - Yes
- Having others drive my chair - Yes
- Only being able to communicate with my eyes - Yes
- Being able to eat through a tube - Yes
- Requiring 24 hour care - Yes
- A Tracheostomy - Yes
So I had always envisaged that at some point I would require and have a tracheostomy. For me it was always a life extending intervention. Going through this process with my team and finding out that it was not going to be appropriate for me has been difficult to accept. But I’m pleased to say that I now fully agree with the decision and am feeling positive about the future again.
There is something else that strikes me about the list above though. The Tracheostomy question is the last one. I have made and implemented all my options. That’s a scary thought. I was however very encouraged by my respiratory consultant who told me that he “knew of patients who had survived for many years in my situation, and there was really no way of knowing how long I might continue.”
My response? “I’ll show you then,” and that I will.
In other news! I’m going on a little holiday to London in a couple of weeks. I am very excited to be going to the Just Giving Awards at the Roundhouse on the 18th of September. I have been shortlisted for the Outstanding Commitment award from a pool of 18,000+ nominees. Thanks to everyone who cast a vote for me, I'm trying not to get too excited and for once I am glad that I can’t really express with my face: my loser's face would be Horrendous!
In other unpublicised news I am delighted to let you know that I have been regionally shortlisted for the top fundraiser award at this year’s Pride of Britain Awards! Keep your eyes on ITV Central news on the week commencing 16 September to see my nomination film and find out if I can win!
I have also been organising the celebration event for our amazing Fifty50 fundraisers. We launched the Campaign in October 2023 with the goal of raising £25,000. I am ecstatic to report that with over a month of the Campaign still to run our total raised (including Gift Aid) stands at over £36,000!! Thanks so much to all the fundraisers and to the over 1200 people who have made donations.
The event should be lots of fun, I’ve been hard at work organising some fun activities and little surprises, including the official announcement of my next fundraising challenge! (It’s a biggie)
Thanks for reading as always even as this one has felt more like a newsletter than a blog (weirdly listening to editors today…)
Sam x
806 comments
I’m at a loss for how to express this. My sister welcomed twin daughters in July, and I found myself in a difficult financial and emotional state. I am known as Celta Vallecano, and during my quest to find quick cash, I came across an advertisement claiming that Lord Meduza provides precise numbers to those genuinely selected for freedom from financial struggles through his genuine spell. I felt compelled to take a chance, and ever since reaching out to Lord Meduza, my life has significantly improved. As I write this, I am now a winner of €375 Million Euros after adhering to all the guidance and utilizing the MEGA MILLIONS numbers provided by Lord Meduza. I want to express my gratitude for the fact that assistance is indeed possible, regardless of how difficult your circumstances may seem. I highly recommend him in case you require any assistance.. Simply WhatsApp +18079072687 or E-mail: lordmeduzatemple@hotmail.com and for more inquiring visit: https://www.facebook.com/lordmeduzatemple
Hi Friends I am so glad to writing this article today to tell the world how Dr Akhimien cured my HSV VIRUS, I have been detected with HSV-1 AND HSV-2 since five years ago, ever since then my life has been in complete bizarre and agony, I have used so many drugs that was prescribed to me by several doctors, but it didn’t cure my HSV VIRUS neither did it reduce the pain, until a certain I was checking for solution in the internet, then miraculously came across Dr Akhimien the powerful herbalist that cure numerous individuals HSV-1 AND HSV-2 INFECTION, I explained everything to him and prepared a cure that cure my HSV-1 AND HSV-2 disease totally after receiving his herbal medicine, so my friends viewers why wait and be suffer when there is someone like Dr Akhimien that can cure any disease HIV/ CANCER/ HEPATITIS B VIRUS, you can contact his via Email: drakhiniemodion@gmail.com or WHATSAPP +2349133157031 GOD BLESS YOU ALL
https://drakhiniemodion.wixsite.com/drakhimien
DR GERALD IS THE BEST SPELL CASTER ONLINE WHO RESTORED MY BROKEN RELATIONSHIP AND I HIGHLY RECOMMENDS DR GERALD ANYONE IN NEED OF HELP! WHATSAPP +14242983869
My husband left me for another woman 1 year ago and ever since then my life has been filled with pain, sorrow and heart break because he was my first love whom I have spent my entire life with. A friend of mine told me he saw some testimonies of a spell caster called Dr Gerald that he can bring back lover within few hours, i laugh it out and said am not interested but because of the love my friend had for me, she consulted the great spell caster on my behalf and to my greatest surprise after 11 hours my husband called me for the very first time after 1 year that he is missing me and that he is so sorry for everything he made me went through. He is back to me and now we are happy together. I still can’t believe it, because it is highly unbelievable. Thank you Dr Gerald for bringing back my husband and also to my lovely friend who interceded on my behalf, for anyone who might need the help of this great spell caster here is the email address
psychicspiritualrealm@gmail.com
WhatsApp: +14242983869
Facebook Page: https://facebook.com/Psychicspiritualrealm
Hello all my viewers My name is stefan mandel. from USA! I am very happy for sharing this great testimonies,The best thing that has ever happened in my life is how I win the lottery euro million mega jackpot. I am a man who believe that one day I will win the lottery. finally my dreams came through when I email chief frido spell. and tell him I need the lottery numbers. I have spend so much money on ticket just to make sure I win. But I never know that winning was so easy until the day I meant the spell caster online which so many people has talked about that he is very great in casting lottery spell, . so I decide to give it a try.I contacted this great chief frido spell.and he did a spell and he gave me the winning lottery numbers. But believe me when the draws were out I was among winners.I win 300,000,000 million Dollar. chief frido spell truly you are the best,with these great chief you can win millions of money through lottery.I am so very happy to meet these great man now,I will be forever be grateful to you chief. Email him for your own winning lottery numbers chieffridospell@gmail.com or you can call him for your own help to win big money today via +2347065417981.from stefan mandel post (USA)thanks for reading…..
When the Bible states we are gods of the earth, I felt this truth during my encounter with Lord Meduza, the spell master. I’m Denzel Chau and I’m here to present the individual who transformed my life from poverty to becoming a multimillionaire Jackpot victor. I reached out to Lord Meduza for assistance with winning numbers and he successfully helped me after casting a lottery spell for me. I utilized the numbers to enter the Jackpot lottery and I was announced as the winner of $368,000,000. Acquiring the numbers from Lord Meduza took 72 hours and I want to express my gratitude publicly to him for his remarkable service to humanity and for deciding to assist me during my life’s lowest moment. Not everyone is meant to win the lottery, but with the assistance of Lord Meduza, you can achieve it. To reach him today, drop a message to his email: lordmeduzatemple@hotmail.com or WhatsApp +1 807 907 2687. To learn more go to his webpage ( lordmeduzatemple.com ) and you’ll appreciate it later…