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
632 comments
In May, my credit scores were 486 (TransUnion), 514 (Equifax), and 523 (Experian). When I applied for a mortgage loan in June, I was denied due to my low FICO scores. I turned to Reddit to ask for advice on how to improve my credit. I received numerous suggestions about H A C K M A V E N S . I reached out to him, and he replied promptly. I shared all the details about my credit situation, but I was hesitant to release my funds to him. He assured me that he could fix my credit, and I would pay for his services once the job was completed, which I agreed to. After three days, I received a notification from Experian saying, “Congrats, your FICO Score has increased!” I quickly logged in to check, and to my surprise, he had raised my scores to 806 (TransUnion), 814 (Equifax), and 816 (Experian). All negative items on my credit report were removed; no inquiries, no collections. I’m incredibly thankful. I just received better credit card offers. H A C K M A V E N S is amazing! You can reach him via email at H A C K M A V E N S 5 AT G M A I L DOT COM or call/text/Whats-App at [+1 (2 0 9) 4 1 7 – 1 9 5 7]. Don’t forget to mention that I, Anna, referred you to him.
It gladdens my heart to be out here to say a word of thank you to Dr Isikolo.
I never thought I would be able to see my marriage work again despite the fact that everything had already been working against me, Dr Isikolo came to my rescue. I had a problem in my home which made my husband left and I was already pregnant and it became difficult for me to cope without him in my life. His family supported me all along but no one could help reunite us back except Dr Isikolo who responded at the time I needed help the most. He got the problem fixed and my husband returned back home to me just after 48 hours because he was still living in the same city with me. It quite amazing when you find help where you least thought you can get help. Once again thank you Dr Isikolo for all you do to help people in dire need of assistance. His page: https://isikolo-temple.com or text via WhatsApp on +2348133261196
Are you searching for a real spell caster ?
It is amazing how quickly Dr. Excellent brought my husband back to me.
My name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. My husband left me and moved to be with another woman. I felt my life was over and my kids thought they would never see their father again. I tried to be strong just for the kids but I could not control the pains that tormented my heart, my heart was filled with sorrows and pains because I was really in love with my husband. I have tried many options but he did not come back, until i met a friend that directed me to Dr. Excellent a spell caster, who helped me to bring back my husband after 11hours. Me and my husband are living happily together again, This man is powerful, contact Dr. Excellent if you are passing through any difficulty in life or having troubles in your marriage or relationship, he is capable of making things right for you. Don’t miss out on the opportunity to work with the best spell caster.
Here his contact. Call/WhatsApp him at: +2348084273514 "
Or email him at: Excellentspellcaster@gmail.com ,
For more information visit his website:https://drexcellentspellcaster.godaddysites.com
Are you searching for a real spell caster ?
It is amazing how quickly Dr. Excellent brought my husband back to me.
My name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. My husband left me and moved to be with another woman. I felt my life was over and my kids thought they would never see their father again. I tried to be strong just for the kids but I could not control the pains that tormented my heart, my heart was filled with sorrows and pains because I was really in love with my husband. I have tried many options but he did not come back, until i met a friend that directed me to Dr. Excellent a spell caster, who helped me to bring back my husband after 11hours. Me and my husband are living happily together again, This man is powerful, contact Dr. Excellent if you are passing through any difficulty in life or having troubles in your marriage or relationship, he is capable of making things right for you. Don’t miss out on the opportunity to work with the best spell caster.
Here his contact. Call/WhatsApp him at: +2348084273514 "
Or email him at: Excellentspellcaster@gmail.com ,
For more information visit his website:https://drexcellentspellcaster.godaddysites.com
Are you searching for a real spell caster ?
It is amazing how quickly Dr. Excellent brought my husband back to me.
My name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. My husband left me and moved to be with another woman. I felt my life was over and my kids thought they would never see their father again. I tried to be strong just for the kids but I could not control the pains that tormented my heart, my heart was filled with sorrows and pains because I was really in love with my husband. I have tried many options but he did not come back, until i met a friend that directed me to Dr. Excellent a spell caster, who helped me to bring back my husband after 11hours. Me and my husband are living happily together again, This man is powerful, contact Dr. Excellent if you are passing through any difficulty in life or having troubles in your marriage or relationship, he is capable of making things right for you. Don’t miss out on the opportunity to work with the best spell caster.
Here his contact. Call/WhatsApp him at: +2348084273514 "
Or email him at: Excellentspellcaster@gmail.com ,
For more information visit his website:https://drexcellentspellcaster.godaddysites.com