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
808 comments
If you are reading this ,I hope it finds you well,My name is Pollin Collew. My relationship with my boyfriend was the best love I have ever experienced. It was a bit toxic though as I wasn’t in the best of places just coming out of my divorce. But our souls were so beautiful together. The good were amazing, we were friends but the challenging times were hard. We were together on and off for nine and half years. We got married at the end we had problems and I freak out and thought I was locked in another toxic marriage and broke it off we separated ways i dedicated some time to myself doing therapy and soul cleansing when I began to stabilize and find my self and love life again and I realized what a gift he was,I still love him however now he will not have anything to do with me again. I missed him. I have tried to move on from him but my heart won’t let me so I reached out to Abdul Basser who helped me fix our problems and brought us back together. I’m grateful I believe he can help you too contact him through these options. +27717403094 or visit his website for more services,https://africanancientspells.mystrikingly.com/
https://streamable.com/41l6w0
https://uaeplusplus.com//pages/registerNew/companyRegistered.aspx?ID=zhSdCzxgmk8=
Thanks,Abdul Basser
A Life-Changing Experience, Psychic medium Ibrahim A Testimony of Gratitude
I would like to share an extraordinary experience that has transformed my life. I came across a remarkable testimony online forum about a powerful and renowned psychic medium, Ibrahim. At the time, I was skeptical because I had never encountered anything related to magic or spell casting before. However, the story of psychic medium Ibrahim’s work resonated with me, and I decided to give it a chance. For years, my family and I struggled financially, and despite my best efforts, I never had luck winning the lottery. I loved playing, but winning seemed impossible. Everything changed when I connected with psychic medium Ibrahim, who provided me with the exact correct winning lottery numbers through a powerful spell. In just 24 hours, I was able to play the lottery and won the Lotto 6/49 prize, a remarkable $88 million cash prize, on September 27th in the Gold Ball Draw. This incredible win has completely changed my life and the financial well-being of my entire family. After 13 years of trying unsuccessfully, I am now living my dream life. I am beyond grateful to psychic medium Ibrahim for his assistance, psychic medium Ibrahim has truly been a blessing to me and my loved ones. I encourage anyone who is interested to reach out to psychic medium Ibrahim for guidance. his website https://africanspellcaster.mystrikingly.com,https://rumble.com/v6uozw1-connecting-with-affordable-psychics-what-you-need-to-know-27785149508-.html or email profibrahim98@gmail.com. Also reach him text or call +27785149508.Thank you once again, psychic medium Ibrahim, for making my dreams come true.
Hello everyone, I’d like to take this opportunity to express my heartfelt gratitude to Prof Ibrahim, a powerful psychic medium Astrology who helped me reunite with my ex-lover after a painful breakup. For 10 long months, I thought our relationship was over, but Prof Ibrahim psychic medium brought us back together. Within 28 hours of the spell being cast, my ex reached out, apologizing for the hurt and promising to make amends. I was overjoyed and welcomed her back into my life. If you’re facing similar relationship challenges or other difficulties, I highly recommend contacting Prof Ibrahim. His spell casting abilities are truly remarkable and powerful. You can reach Prof Ibrahimvia WhatsApp:Tel: +27785149508 /
Email:profibrahim98@gmail.com
https://africanspellcaster.mystrikingly.com
https://www.youtube.com/shorts/s1ewUeVVAHk
https://uaeplusplus.com//pages/registerNew/companyRegistered.aspx?ID=fqaUj4kc2u8=
https://write.as/ibra/
https://rumble.com/v6up0ez-finding-the-best-psychic-in-your-area-27785149508.html
powerfulspellcastertraditionalhealer27785149508197.home.blog
Hello my name is Lisa Johnson from USA I want to tell the world about the great and mighty spell caster called Abdul Basser my husband was cheating on me and no longer committed to me and our kids when I asked him what the problem was he told me he has fell out of love for me and wanted a divorce I was so heartbroken I cried all day and night but he left home I was looking for something online when I saw an article how the great and powerful Abdul Basser have helped so many in a similar situation like mine he email address was there so I sent him an email telling him about my problem he told me he shall return back to me within 48hrs I did everything he asked me to do the nest day to my greatest surprise my husband came back home and was crying and begging for me to forgive and accept him back he can also help you contact email basserabdul59@gmail.com or WhatsApp him +27717403094, you can also visit his website https://africanancientspells.mystrikingly.com///youtube.com/shorts/QQazQvYZPuo?https://streamable.com/41l6w0,https://uaeplusplus.com//pages/registerNew/companyRegistered.aspx?ID=zhSdCzxgmk8=
I am so excited to share with you how Ibrahim made me achieve my dreams after 13 years of playing the lottery,power ball. I saw a couple of comments about him several years ago. I wondered how it was possible. Until it finally worked for me the numbers he gave me were what I played, I’m still in shock… I, a Lapeer county man, won the $8,000,000 power ball, the only word I can use to describe the feelings of finding out that I have won the 8 million dollars is shocking. I am just now believing that this is real. Ibrahim is indeed a powerful psychic medium you can reach him at +27785149508 /
Email:profibrahim98@gmail.com
https://africanspellcaster.mystrikingly.com
https://www.youtube.com/shorts/s1ewUeVVAHk
powerfulspellcastertraditionalhealer27785149508197.home.blog
https://write.as/ibra/
https://rumble.com/v6uozw1-connecting-with-affordable-psychics-what-you-need-to-know-27785149508-.html
https://photos.google.com/album/AF1QipOW2O3Qs4DZ8RHkSGMVeW7qCgxM5zPbPni6-KS1
for quick results.