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
907 comments
As I sit down to reflect on the past few months, I can’t help but feel a mix of anger, betrayal, and disbelief. I was one of the many Canadians who fell victim to the Maple Leaf Digital Growth Fund, a scheme that promised a seemingly irresistible 5% monthly return on investments. At first, it sounded like a golden opportunity, especially in a world where traditional savings accounts barely keep up with inflation. Little did I know that I was stepping into a trap that would cost me and my friends dearly.It all started when my close friend, Mark, approached me with the idea. He had been raving about the fund, sharing how he had already made a
WhatsApp: +1 (920) 408‑1234 significant profit. Mark was always the savvy investor in our circle, and his enthusiasm was contagious. He convinced me and a few others that this was a chance we couldn’t afford to miss. We trusted him, and that trust led us to invest a combined total of $4.7 million, with each of us believing we were making a smart financial decision.As the months went by, the returns came in as promised, and I felt a sense of relief and excitement. I even encouraged a couple of my colleagues to invest, thinking I was helping them secure their financial futures. However, everything changed when withdrawals were suddenly suspended. Panic set in as we tried to access our funds, only to be met with vague excuses and delays. It was then that the reality hit us: we had been duped.When PRO WIZARD GIlBERT RECOVERY stepped in, I felt a glimmer of hope. Their team of recovery specialists quickly identified the operation as a Ponzi scheme, revealing that the returns we had received were simply payments made from the investments of newer participants. I was devastated. The realization that I had not only lost my money but had also influenced others to invest was a heavy burden to bear.Their skills were apparent as they navigated the intricacies of the case. When they revealed that they had successfully retrieved all the funds, a profound sense of relief washed over me. Such a positive outcome is uncommon in these scenarios, and I felt immense gratitude for their hard work.This ordeal has imparted a crucial lesson about the necessity of thorough research and skepticism in the investment landscape. I’ve come to realize that if an opportunity seems too good to be true, it often is. I’ve learned to exercise greater caution when it comes to encouraging others in financial decisions. I’m thankful to have my money restored.
Email: pro wizard gilbert recovery (@) engineer. com
Telegram: http s:// t. me/Pro_Wizard_Gilbert_Recovery
Website info: http s://pro wizard gilbert recovery. info
Love Spell To Reunite With An Ex.
This spell will allow you to reunite with an ex that you want to get back together with.
Instructions: Each spell I cast is created specifically for you and your exact needs. In order to cast your spell, I will need some information from you:
Your name and partner’s
Upon completion of your spell casting(s), I will contact you to confirm that your spell has been cast.
Results manifest within 24 hours. Whats App Number +2348167159012
If you have any questions, I am more than happy to answer them. Contact me doctor odunga at odungaspelltemple@gmail.com
#voodoodoll #voodoomagic #voodoo #voodoospells #lovespells #lovespellsthatwork #love #lovespellmaster #spell #spellcasting #spellcatingwitch #castingspells #witch #witchesofinstagram #witchcraft #curse #protectionspells #wicca #wiccan #spirtualhealer #spirtuality #mantra #psychicreading #psychic #reunion #getmyexback #exback #moneyspells #wealthattraction #skulls
FIX THE FOLLOWING PROBLEMS TO ALL ACROSS THE
Get your ex back spell Lottery Spell Money spell Pregnancy spell Prosperity spell Protection spell Get a huge loan without paying any fee spell Long life spell Freedom From Prison spell Love/Reunion spell Marriage spell Popularity spell Killing/Revenge spell Healing spellGLOBE ON:
Contact for any of these at:
EMAIL: odungaspelltemple@gmail.com Call/Whats App +2348167159012
My name is Billy Harlan from Texas, USA. I was targeted by a group of individuals who ended up stealing a significant amount of money from me through crypto and Bitcoin.
It all began about two months ago when I received an email promising high returns if I invested in crypto and forex. They presented detailed earnings reports and trading charts that looked very convincing. Looking back, I can admit it was easy to believe.
At the time, I had no idea I was being set up. I started by investing just $5,000 and my within two weeks, I had invested $218,000. However, they claimed my investment had grown to $703,000. To this day, I’m still shocked at how they were able to convince me to invest that much.
Once I realized it was a scam, I contacted the authorities but unfortunately, there was nothing they could do to recover the funds. Not willing to give up, I reached out to a few friends. One of them recommended Morphohack, a private investigator and fund recovery team.
Their team was incredibly helpful and professional. Morphohack worked hard to help me recover my funds, and I’m very grateful for their support. I’m sharing this in case anyone else finds themselves in a similar situation, there are people out there who can help and you can reach them by email: Morphohack@cyberservices(.)com
CAN LOST SEED PHRASE BE RECOVERED?
Yes- Miraculously, i was able to recover the seed phrase to my Crypto Wallet. Thanks to the expertise of a professional digital asset recovery firm known as TROJANHACK CYBER SECURITY COMPANY.
At time, i was going through one of the most emotionally draining period of my life. i faced the terrifying possibility of losing my entire life savings worth 818,000 American Dollar. but TROJANHACK came through. They were calm, methodical and reassuring throughout the entire process.
utilizing a combination of advanced techniques and sophisticated tools- some which operate in deep digital spaces. they successfully retrieved my lost seed phrase. i was left in awe of their skills and professionalism.
They can be contacted via email at Trojanhack@qualityservice.com
if anyone lost access to their digital assets or struggling with a compromised wallet. TROJANHACK should be your first call. they are the best in the world of crypto recovery.
Hire a Hacker to Recover Stolen or Lost Bitcoin; Trusted Crypto Recovery Expert; Hire OPTIMISTIC HACKER GAIUS
Could you be careful with investment sites? I recently fell victim to a scam, losing $167,000. You invest to make a profit, but not to be scammed. I was a victim, and I wouldn’t want anyone to be a victim of this. Then I saw a review of OPTIMISTIC HACKER GAIUS Crypto Recovery Services, I contacted them via the Website (https://optimistichackargaius.com) and they assisted me. And retrieve all my lost money. You can get in touch with them if you’re a victim. Chat with them on WhatsApp +44 737 674 0569 Or Email them at (support@optimistichackargaius.com)