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
809 comments
Using herbal natural remedy was what got me tested negative to HSV 2 after being diagnosed for years. I have spent so much funds on medications like acyclovir (Zovirax), Famciclovir (Famvir), and Valacyclovir (Valtrex). But it was all a waste of time and my symptoms got worse. To me It is very bad what Big pharma are doing, It’s also crucial to learn as much as you can about your diagnosis. Seek options reach out to: WORLD REHABILITATE CLINIC
INSTANT LOVE SPELL CASTER TO HELP GET BACK EX-LOVER AND HELP FIX BROKEN MARRIAGE WITH 100% GUARANTEED RESULTS, +447477869404. USA, UK, FRANCE, CANADA, AUSTRALIA, NETHERLANDS, AUSTRIA, BELGIUM, IRELAND.
Allow me to present my testimony, My name is Mylene Sint Jago and I hail from Curacao. I am here to share with you an extraordinary experience I had with DR. SARUMAN. My husband and I had been married for seven years and were blessed with two adorable children, a boy, and a girl. However, our happiness came under threat when my husband’s behavior suddenly changed. He started coming home late from work, and his attention towards me and the kids dwindled significantly. It wasn’t long before I discovered that he was seeing someone else. I tried to fix our marriage, but my efforts were fruitless, and I became increasingly worried and desperate for a solution. One day, while browsing the internet, I stumbled upon a website that recommended DR. SARUMAN https://perfectsolutiontemple.weebly.com as a solution to marital problems and relationship issues. Intrigued, I decided to give him a chance and contacted him for help. To my surprise, he responded promptly and performed a powerful spell for me. To my amazement, just two days later, my husband came to me and apologized for his wrongdoings. He promised to never leave us again, and ever since then, our family has been reunited, and our lives have been filled with happiness and love. I cannot express my gratitude enough to DR. SARUMAN for his intervention in saving my marriage. If you or anyone you know is facing similar challenges in their relationship, I implore you not to ignore this message. DR. SARUMAN has the power to restore broken relationships and bring joy and fulfillment back into your life, Facebook: https://www.facebook.com/permalink.php?story_fbid=pfbid0bdAy8QgDnZeQA3hnsQeYppZGqC2KYYUYKn4yZiiMXxAiyEmBRsP1v7bvJEmqnVd5l&id=61560420964460 Youtube Link: https://youtu.be/wv5jF27EKIs Email: perfectsolutiontemples@gmail.com or you can chat him directly on his WhatsApp: +447477869404. I would advise you to contact DR SARUMAN because he is the right man to help you get all your spiritual problem solved with his powerful spell.
*LOVE SPELLS
*MARRIAGE SPELLS
*MONEY SPELLS
*BEAUTY SPELLS
*WEALTH SPELLS
*ATTRACTION SPELLS
*HIV CURE SPELLS
*CASINO SPELLS
*REMOVE CURSE SPELLS
*PROTECTION SPELLS
*LOTTERY SPELLS
*GOOD LUCK SPELLS
*FERTILITY SPELLS
Traditional Healing Spell In Durban City, Lost Love Spell Caster In Bloemfontein City In Free State Call ☏ +27782830887 Love Spells In Pinetown, Bring Ex Love Back In KwaDukuza South Africa,
I am here to try to meet your needs depending on what your situation may be. Call +27782830887, It’s time for you to get the help which could answer your long time prayers. All services are through the guidance of my ancestors who give me the ability to summon them upon and try and help in what afflicts you.I am an expert healer who solves all types of problems. like the following
Bringing back lost lovers in one day
Divorce or Court issues
Financial problems and DEBTS
Preventing your partner from cheating on you
Making your partner love you alone
Get a divorce settlement quickly from your ex-partner
Removal of bad luck and debts
Buy a house or car of your dream
I help students pass their exams/interviews
I help those seeking employment
Speed up money claim spell,delayed payments,pension and accident funds
Unfinished jobs by other doctors-if not satisfied-come to me.
Win business tenders and contracts
Do you need to recover your lost property
Promotion at work and better pay.
Do you want to be protected from bad spirits nightmares?
Are you a herbalist who wants to get more powers?
Why you can’t keep money or lovers?
Why do you have a lot of enemies?
Why you are fired regularly on jobs?Never too late to solve your problems.
Whatsapp/Call +27782830887
https://twitter.com/profmusa1
https://www.instagram.com/drprofmusa/
https://www.tiktok.com/@drprofmusa17?
https://moneyandlovespells.hashnode.dev/
https://medium.com/@psychicprofmusa
https://za.pinterest.com/psychicandherbalist/
Email-psychicandherbalist@gmail.com
https://www.youtube.com/watch?v=I156i2zGsqg
https://spiritualhealerlovespellcaster.site123.me/
https://www.facebook.com/papamusanalovespecialist
https://community.conservativenewsdaily.net/Drprofmusa
https://psychicandherbalis.wixsite.com/lovespellsindurban
https://www.linkedin.com/in/dr-prof-musa-musana-225880191
Freshly spammed Database Leads, Fullz Updated 2025
All Fresh & Genuine Stuff
Huge discount offers for bulk buyers
-USA/UK/CANADA Fullz-
SSN NIN SIN with DOB Address & other info
Fullz with DL issue & expiry dates
DL Front Back & Selfie with SSN info
High credit scores pros (700+ score)
Young Age & Dead Fullz
USA Passport Photos
Home Owners Leads
Employee Leads
Email & Phone Numbers Leads
Business Pros Company Fullz with EIN
Business Owner Leads
USA Bank Leads
Payday & loan Leads
Sweepstakes Leads
Loan Method
Cashout Methods
*Many other stuff available on demand
*Payment upfront in any crypto currency
*Available in bulk quantity
*Replacement available for any invalid info
Contact fast for deals and discounts
-——————————————————————
What’s App: +1_605_ 846_ 1870…
TG channel: t.me/bigdatatrader
Telegram: @ Fullzpros
Email: Datatrader3 (@) gmail.com
#SSN #SSNDOBDL #SellSSN #ShopSSNDOBDLADDRESS #FULLZ #SSNFULLZ
#FULLZUK #SellerNINDOB #ShopNINDOB #BusinessFullzUK #UKLeads #HighCreditFullz
#ShopSINDOB #BusinessFullzCanada #CanadaLeads #shopsindl #NINDOBDL
Hello to everyone, 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 that needs help to reach him via email: lordmeduzatemple@hotmail.com or you WhatsApp this number +1 (807) 907-2687.