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
930 comments
Hey everyone! I wanted to share an amazing journey I had. My marriage was going through a tough time, and I was searching for help. I found a testimony of a spell caster Priest AZ online and reached out. He told me not to worry, he gave me some instructions which I obeyed. With his power and love spell, he helped me get back my husband, and restored our marriage. I’m forever grateful for his intervention. If any of you out there is going through a similar situation, If you need to get your husband back to you, you need to fix a broken marriage, you need to stop a divorce or you want to restore a broken marriage/relationship. I want to encourage you to seek help from priest AZ, Contact him at Mightylovespell@gmail.com. WHATSAPP: +2349122985051
After I and my husband got married, we relocated to another city and we both got jobs and started working and living together happily. We never had any problems until a colleague of his started doing all she can to get my husband’s attention. I never knew all along what was going until he started sleeping out and making excuses. Things got out of control and he eventually stopped attending to my needs. I knew at that point I needed help so I contacted Dr Isikolo and explained everything to him. He told me all that has been going and promised to fix the problems for me which he did. He cast a love reunion spell for me which reunited i and my husband and he started being the man I always loved him to be just after 48 hours Dr Isikolo worked for me. We are both happy now and it would not have been possible if not for Dr Isikolo. Contact him if you need any help. His webpage: https://isikolo-temple.com or text him on WhatsApp via +2348133261196
My name is James Liam and I want to share my experience of how I recovered my stolen Bitcoin with the help of Smithwhitehackservice. A few months ago, I lost a significant amount of cryptocurrency to scammers, and I felt completely hopeless. After doing some research and coming across Smithwhitehackservice, I decided to give it a try. Their team was incredibly professional and supportive, guiding me step by step through the recovery process. To my surprise, they were able to recover my funds successfully. I’m truly grateful for their service and highly recommend them to anyone who has lost their cryptocurrency to fraud or hacking.
Contact info ::
Email :: SMITHWHITEHACKSERVICE@GMAIL COM
WHATSAPP +1 (559) 508 (2403)
hello am Sebastian..
My story changed when I met DR easbnam through Elizabeth Traffords post on how she won the lottery with the help of DR easbnam. Spell is still very effective, I was convinced after using the numbers provided by DR easbsnam when I told him I wanted to win the lottery because of the post I saw online about his winning numbers, he said he has helped a lot of people and I won’t be an exception to that, he put in work for me after I provided the necessary Informations he requested from me, after then he gave me the numbers to play after 24hours and directed me on how to play and when I should play them which I did, I won £5.2 million pounds, I’m excited that my dream has come through, DR easbnam is the best when it comes to winning the lottery with spell and prayers Email: easbnamspellhome@gmail.com or whatsapp him on +2349134682114 or also contact him via his Facebook page: https://web.facebook.com/profile.php?id=61552423487938&sk=about
This is my testimony on how I finally joined the new world order, Illuminati after I have been trying to join for over 2 years now but scammers took money from me several times. I have been searching to join the Illuminati for so long, but scammers keep taking my money until early this year when I meet with Lord Felix online I contacted him and I explained everything to him and he recommended the registration used and I paid for the big member to get me started and I was initiated into the World Order online and I receive the sum of $1,000,000 us dollars in to my bank account instantly after my online initiation ritual and also I will be earning $33,000 us dollars monthly, I’m very happy! And promise to spread the good work of Lord Felix. If you are interested in joining the new world order Illuminati today, contact Lord Felix today instead of accepting scammers to take your money all in the name of helping you join, Contact Lord Felix Via email illuminatiofficial565@gmail.com or WhatsApp +447918641801