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
810 comments
I never knew I could get my fiancé back to me until I contacted Dr Isikolo who helped me. I had a terrible misunderstanding with my man and we went different ways. I was down emotionally and knew not what to do to help the situation. So I got to know about Dr Isikolo. I contacted him and got him to help with my problems. He told me all that I needed to know and understood and I complied with procedures and he eventually fix the problem for me and now I and my fiancé are back together and I know we will get married soon. It won’t have been possible if Dr Isikolo didn’t help me as promised. The result of his work surely manifest after 48 hours and it 100% guaranteed. Its visible for me to see the effect of the result of everything he did for me and truly the love and affection between i and my fiance is restored back fully and it gladdens my heart that i didnt loose him to anyone out there. He can as well help you if you reach out to him now. Text him on WhatsApp him on +2348133261196 or go through his page: https://isikolo-temple.com
Hello to everyone around the globe. I’m Jefferey Vargas from Malta. My girlfriend ended our relationship for seemingly no reason and I came to understand that my financial struggles may have contributed to this, as a healthy relationship is difficult without money and aside from God, having more money is often seen as vital. For spellcasting, Lord Meduza is the right person to turn to. My girlfriend left me for another man due to my financial situation, but after connecting with Lord Meduza, he created a spell that not only brought my girlfriend back but also made me a lottery winner of €116 million by providing me with the 6 lucky numbers. Everything feels almost unreal but I assure you this is genuine and it’s occurring. My life is incredibly beautiful and I owe my deepest appreciation to Lord Meduza as his efforts are the epitome of excellence.. I strongly encourage everyone here to reach him for help via email: lordmeduzatemple@hotmail.com or you WhatsApp this number +1 (807) 907-2687.
Hello, everyone, my name is Jessey Anthony am from the Australia-Queensland I was so happy to see a testimonial given by someone called Petrov Ganovish about his cheating ex-wife that wanted his father’s money so I have to contact the email of the man that helps him out in exposing her, for him to help me to expose my husband cheating and wrong deals with other women out there i had to contact PROFESSIONAL WIZARD HACKERS to assist me in the job right now, i have complete access to his phone. I got concrete evidence. it was unbelievable to see the evidence of my hubby cheating on me. Who likes to live with a cheater, I used the evidence I got to file for a divorce. I’m thankful to PROFESSIONAL WIZARD HACKERS for helping me out of my dilemma and suspicions. His services are highly rated and affordable he is best and good in his work contact him email: professionalwizardrecovery@programmer.net or professionalwizardrecovery@gmail.com / WhatsApp: +44 7442 684963 Immediately for your areas of Hacking services I have to share the Good news with everyone so u can be able to know the truth of your spouse through mobile spy or phone spy and the offer other services related hacking and funds recovery. Contact him WhatsApp: +44 ( 7442 684963 ) for any type of hacking, he is a professional hacker that specializes in exposing cheating spouses and figure out your relationship status. I wish you the best. Email: professionalwizardrecovery@gmail.com
Telegram: https://t.me/professionalwizardcryptohackers
My appreciation goes to Dr Lucky for curing my HERPES with his healing medication, i do not have much to say but with all my life i will for ever be grateful to Dr Lucky to reach me when i thought it was all over, today i am happy with my family after the medical doctor have confirmed my HERPES status Negative, i have never in my life believed that HERPES could be cured by Dr Lucky healing medication. so i want to use this means to reach other persons who have this disease that all hope is not lost yet, try and contact him by any means for any kind of disease with his Email ( drluckyherbalcure@gmail.com or
him facebook page https://www.facebook.com/drluckytreat ) Or Whatsapp his number (+2348154637647
My appreciation goes to Dr Lucky for curing my HERPES with his healing medication, i do not have much to say but with all my life i will for ever be grateful to Dr Lucky to reach me when i thought it was all over, today i am happy with my family after the medical doctor have confirmed my HERPES status Negative, i have never in my life believed that HERPES could be cured by Dr Lucky healing medication. so i want to use this means to reach other persons who have this disease that all hope is not lost yet, try and contact him by any means for any kind of disease with his Email ( drluckyherbalcure@gmail.com or
him facebook page https://www.facebook.com/drluckytreat ) Or Whatsapp his number (+2348154637647