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
661 comments
CONTACT Mr PATRICK WILLIAMS IS A NICE MAN…. call (2349071562811) or add him on WhatsApp (2349071562811) I was thinking that illuminati is not real, But today with Mr Patrick Williams I now believe that illuminati is real, when you come across wrong person’s you will think that life is not real but when you are with the real one you will experience the goodness of your life, To Mr Patrick Williams has made me discovered my purpose of life. Welcome to the great brotherhood of Illuminati 666: . WhatsApp Mr Patrick Williams , from , Nigeria, and every other Country’s on how to join the Illuminati brotherhood to get rich and famous, You may be a politician, business man/woman ,musical artist, student, footballer or whatever occupation you do, you want to be rich, powerful and famous in life. Illuminati can grant all your heart desires join the Illuminati to become rich and famous in life, Illuminati will make you achieve all your dream to become rich and protected all the days of your life…… BENEFIT GIVEN TO A NEW MEMBER WHO JOIN THE ILLUMINATI a cash reward of usd $2.5million USD a new sleek dream car valued at USD $70,000.00USD a dream house build in any country of your own choice one month holiday (fully paid) to your dream tourist destination.One year golf membership package a V I P treatment in all airports in the world a total lifestyle change access to bohemian grove monthly payment of$10,000USD into your bank account every month as a member, one month booked appointment with top 5 world leaders and top 5 celebrities in the world» JOIN ILLUMINATI YOUR FINANCIALDIFFICULTIES ARE BROUGHT TO AN END. WE SUPPORT YOU BOTH FINANCIALLYAND SPIRITUALLY TO ENSURE YOU LIVE A COMFORTABLE LIFE . IF YOU ARE INTERESTED CONTACT Mr Patrick Williams on WhatsApp +2349071562811 Or call him +2349071562811 email him on : mrpatrickwilliams666@gmail.com For immediately response….My Regard to mr Patrick Williams…….
A great testimony. ’On how I join the great ILLUMINATI by Mr Patrick Williams IS CONTACT
(2349071562811) I never thought that ILLUMINATI existed. Until I found Mr. Patrick Williams . Who told me how I will be initiated into the great brotherhood of the Illuminati. He gave me guidelines on what to do. And I did exactly what he told me to do. Now I am a complete multibilonia To want to get rich today, just message him now WhatsApp (2349071562811) This is my story testimonial of how I finally JOIN ILLUMINATI Be careful many of these posts and testimony about how to
Join ILLUMINATI, some are not real,I Was Scammed twice trying to join the ILLUMINATI organization ☑️ I was promised MONEY, CAR AND HOUSE but it was all a scam, I lost more than $6000 USD until a friend of mine ♦ ️ ️ ️ ️ ️
From chicago, he directed me to the real name of the agent is Mr Patrick Williams…. where I finally became a member of ILLUMINATI and 2.5millions USD a car House and without a visa ….. he gave me as a new member am here to share this testimonial about what happened before getting the real agent ..
Be careful, not all of them are real … if you want to be RICH AND FAMOUS….Then contact the real agent Mr Patrick Williams….
On WhatsApp
Via: (+2349071562811) or email him mrpatrickwilliams666@gmail.com If you are ready to join this is how I join the ILLUMINATI fraternity……. ………
LIFE CHANGING TESTIMONY
I lost $57,800 crypto trading platform after being promised 15% daily profits. It was a financial nightmare! Desperate, I turned to a trusted friend who introduced me to the amazing team at JetWebHackers. In just 48 hours, they tracked down the scammers and recovered my funds! Their exceptional service changed my life. If you’ve been scammed, don’t hesitate—contact JetWebHackers for a swift recovery!and also i got mine ATM blank card last week from jetwebhackers and I have used it to get $55,000 Jetwebhackers is giving out the card just to help the poor and needy though it is illegal but it is something nice and he is not like other scam pretending to have the blank ATM cards. And no one gets caught whenusing the card. get yours from Jetwebhackers ⭐️⭐️⭐️⭐️⭐️
Reach out to them today and turn your situation around!
WEBSITE: jetwebhackers. com
EMAIL: jetwebhackers@gmail.com
WHATSAPP: +1 (505) 428-8792
CONSULT A LICENSED BTC / ETH RECOVERY EXPERT -SPEED ETHICAL RECOVERY HACKER
Greetings friends.. I hope everyone is doing well. I’m here to talk about my experience with SPEED ETHICAL RECOVERY. A month ago, I fell victim to internet scammers that I had met on Facebook and had begun corresponding with. He also informed me about investing in cryptocurrencies, which we discussed. once a few weeks, I invested $185000, and once I med the investment, our conversation stopped, and he stopped paying attention to me. Later, I discovered that it was a hoax. However, SPEED ETHICAL RECOVERY assisted me in getting my lost cryptocurrency back. I’m thrilled to share it today, so if you find yourself in a similar circumstance, I suggest SPEED ETHICAL RECOVERY.
Website ; https://speedethical-recovery.lovable.app
mail ; speedethicalrecovery@hotmail.com
Whatapp ; +447394810353
All thanks to God Almighty who use Dr. Guba to cure me from Herpes virus with his herbal Medicine, For those suffering from the same Virus You can contact his WhatsApp +2347077581439, he can also cure your health issues Like HBP, Hepatitis B Virus, Herpes, HPV, ALS etc. Email him atdrgubahealingherbs@gmail.com, or website: https://drgubahealingherbs.wixsite.com/guba-healing-herbs