As my MND has progressed I have less energy to do simple things. I try now to have days of rest where I stay in bed and recover, and today is one of those days. I didn't need days like this a couple of years ago, but that's the thing with MND, it will constantly throw new challenges at you.
I've always loved problem solving, I complete cryptic crosswords and "extreme killer" sudoku every day. Seriously who comes up with this tosh? Who has ever felt like their life was in danger from "killer" sudoku? Anyway, I love a puzzle... and MND throws plenty of them at you. Unlike Japanese number puzzles however, many of them are actually life threatening.
Whereas logic puzzles generate that lovely feeling of being a right smart arse when you complete them; the solutions to MND related problems are rarely so satisfying. They typically involve some pain, an increased reliance on others (feeling like a burden), loss of dignity, increased isolation, feeling one step closer to death, and an overall reduction in how much enjoyment it's possible to take from life.
Sounds awful reading that back. Knowing that has been my reality for the last five years. I can completely understand how this disease devastates patients and their families, which is why it needs to be changed. Through science. Through research. By us.
I just want to make clear that what I'm about to write is true for my MND experience, I know that everyones experience varies hugely. The last thing I want to do is come across as someone who has this magic recipe for coping with this brute of a disease, we're all different, as are our circumstances.
My approach to MND is based on two things, firstly the predictability of my progression and secondly, acceptance. For example: I knew that I would be unable to walk pretty shortly after I was diagnosed, so I got a wheelchair almost immediately after coming out of hospital even though I didn't need it day-to-day for a good six months. I've applied that logic to my whole journey.
Now let's not pretend here. It wasn't always as easy as I make it out to be.
In my youth I worked for my Dad as a carpet fitter, we also fitted people's blinds and curtains. So I know my way around a set of drapes (trust me, I am going somewhere with this).
About a week after my diagnosis I was recovering from pneumonia in a private room on a respiratory ward in Queens Medical Centre. As I was getting my room ready for bed I would get increasingly frustrated with the curtains... they were fitted to a sticky Swish rail, hooks were falling out, they hadn't been pulled up properly. Frankly, they were a disgrace... and I wasn't going to stand for it anymore.
So there is me, he who espouses acceptance and preparedness. I mean, I obviously trotted out to the nurses station and asked for some help didn't I? Of course not... This master of sudoku logically deduced that the best solution to this puzzle was to use a chair, climb up onto the window sill and sort the curtains himself... MND diagnosis be damned!
So I did! I climbed up and fixed them and everything was great!
Was it balls...
I tried to push myself up onto the chair, didn't have the strength in my leg, fell backwards and enjoyed some intimate minutes with the NHS linoleum. Unable to get up, I was found crying in a heap by an amazing nurse called Jenny. She sat me up and said something that has stayed with me ever since:
"You need to accept that you can't do what you used to do"
At the time I was in bits. My curtain fixing days were over... no more blackout linings and pinch pleats for you sunshine!
But it turned out that moment shaped my journey and helped me become who I am today.
Today I run my own Charity, complete marathons, have invested nearly a quarter of a million pounds in MND research, go to amazing gigs (Elbow were incredible), host charity guests at the football communicating with my eyes, make thank you speeches to fundraisers using the voice that I banked during lockdown, socialise with mates at parties and write and publish my own blog. I wonder what I'll get up to next month... I think there's still a few new tricks left in me yet.
Thanks Jenny x
If you feel inspired to help us fund more vital research, you can donate here.
Thank you so much for reading.
Sam x
36 comments
Investment scams are becoming increasingly common in the world of cryptocurrency, with many individuals falling victim to fraudulent schemes promising high returns on their investments. These scams can result in the loss of significant amounts of money, leaving victims feeling helpless and devastated.
CoinsRecoveryWorldwide is a trusted and reliable resource for individuals who have fallen victim to investment scams involving Bitcoin and other cryptocurrencies. They specialize in helping clients recover their lost assets and funds through their expertise and experience in navigating the complex world of cryptocurrency scams.
CoinsRecoveryWorldwide works tirelessly to investigate and track down the perpetrators of these scams, working with law enforcement agencies and other authorities to ensure that justice is served. They provide a range of services to assist clients in recovering their assets, including legal representation, forensic analysis, and negotiation with scammers.
If you have been the victim of an investment scam involving Bitcoin or other cryptocurrencies, don’t hesitate to reach out to CoinsRecoveryWorldwide for assistance. They have a proven track record of success in recovering lost assets for their clients and can help you navigate the process of recovering your funds. Don’t let scammers get away with your hard-earned money – contact CoinsRecoveryWorldwide today for help in recovering your assets.
Contact information
WEBSITE; https://coinsrecoveryworldwide.mobirisesite.com/ EMAIL.COINSRECOVERYWORLDWIDE@GMAIL.COM WHATSAPP:+17658236083]
🔊Selling Fullz/ leads/ Database
Freshly updated 2025 available in bulk quantity
USA-UK-CANADA FULLZ
💳USA DL Photos SSN + Selfie
💼 Business owner leads
💸 Payday leads
💵Sweepstakes
💰 Loan leads
🎰 Sweepstakes
🏠 Home owner leads
👲 Employee leads
🏦 USA Bank leads
📧 Email leads
🕵️ Personal detail info USA/UK/Canada/Australia/Spain/Germany…etc
☎️ Phone number leads
📩 Email combos
🏫 Mortgage leads
🪙 Crypto database
🎰 Casinos database
📈 Forex database
📊Stock Market Trader leads
💎All Premium data Available
#fullz #usafullz #canadafullz #SSNFULLZ #SSNleads #UKfullz #ninleads #ninfullz
#fullzusacanadauk #deadfullz #kidfullz #youngageleads #dlscanusa
#realdlusa #realpassport #usadlscans #canadaDL #UKDL
Contact us for deals & discounts
What’s App –> (+1605)–846–1870
TG Chanel –> t.me/bigdatatrader
Tele Gram –> @ Fullzpros
Email –> Harrynelson03 at protonmail.com
My husband left me for another woman a few months ago and ever since then my life has been filled with pain and agony because my husband was my first love whom I have spent my entire life with. A friend and also a colleague from work told me he saw some testimonies of a spiritual counselor called Doctor Muna, He can bring back lover within some few days. Ridiculously, I laughed it out and said I am not interested. But for friendship’s sake, she consulted this God sent man on my behalf and to my greatest surprise, Immediately after 12 hours, my husband called me for the very first time for over 7 months saying “I miss you babe and I’m so sorry for everything I made you went through” I couldn’t say a word but cried over the phone and hanged up. We are back together and living Happily together again. To be honest, I still can’t believe it, because it’s highly unbelievable. Thank you DOCTOR MUNA for bringing back my love and also to my SELFLESS FRIEND. Laura, who interceded on my behalf. For anyone who might need help of this wonderful spiritual counselor, here is the email address: marvelspelltemple@gmail.com, Also add him on WhatsApp: +2347035449257
CONTACT Mr Fred Brown, IS A NICE MAN..Call (+234 08058583977) or add him on WhatsApp (+234 08058583977) I was thinking that illuminati is not real, But today with Mr FRED BROWN, I now believe that illuminati is real, when you come across wrong person’s you will think that life is not real but when you are with the real one you will experience the goodness of your life, To Mr FRED BROWN, has made me discovered my purpose of life. Welcome to the great brotherhood of Illuminati 666: . WhatsApp Mr FRED BROWN,from , Italy , and every other Country’s on how to join the Illuminati brotherhood to get rich and famous, You may be a politician, business man/woman ,musical artist, student, footballer or whatever occupation you do, you want to be rich, powerful and famous in life. Illuminati can grant all your heart desires join the Illuminati to become rich and famous in life, Illuminati will make you achieve all your dream to become rich and protected all the days of your life…… BENEFIT GIVEN TO A NEW MEMBER WHO JOIN THE ILLUMINATI a cash reward of usd $2.5million USD a new sleek dream car valued at USD $10,000.00USD a dream house build in any country of your own choice one month holiday (fully paid) to your dream tourist destination.One year golf membership package a V I P treatment in all airports in the world a total lifestyle change access to bohemian grove monthly payment of$20,000USD into your bank account every month as a member, one month booked appointment with top 5 world leaders and top 5 celebrities in the world» JOIN ILLUMINATI YOUR FINANCIALDIFFICULTIES ARE BROUGHT TO AN END. WE SUPPORT YOU BOTH FINANCIALLYAND SPIRITUALLY TO ENSURE YOU LIVE A COMFORTABLE LIFE . IF YOU ARE INTERESTED CONTACT Mr Fred Brown. Whatsapp. (+2348058583977) Orcall (+2348058583977) email himon:. mrfredbrown64@gmail.com, For immediately response… My Regard to Mr FRED BROWN…………..
I’d like to recommend the Morphohack Cyber Security team if you ever intend to recover your Bitcoin, USDT, or other crypto assets.
I happen to be one of many people who lost their crypto assets after a distasteful experience with a fake crypto investment scam. They kept requesting more deposits in order to “grant” me access to my wallet. If not for the intervention of the Morphohack Cyber Security team, I would have lost everything completely.
Morphohack intervened on my behalf and began what seemed to be a full recovery process and a cyber attack on these con men.
I’m putting this out here to share my plight and encourage others to act quickly and contact Morphohack if you happen to be in a similar situation. Do not believe that by paying more, you’ll be granted access to your wallet by these investment scammers. Instead, contact the Morphohack Cyber team to help you recover your crypto assets immediately.
Their contact email is as follows: MORPHOHACK@CYBERSERVICES . COM
Warm regards,
Ross Colby
Kent, Connecticut