Living with MND: 2025 Progress Update + Answering Your Questions | Diagnosed Dad
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- เผยแพร่เมื่อ 20 ม.ค. 2025
- Welcome to my first vlog of 2025! 🎉 In this video, I’m sharing a personal update on my motor neurone disease (MND) journey-covering how the condition has progressed, the challenges I’m facing, and how I’m adapting as a dad of three.
I’m also answering YOUR questions about living with MND, family life, and staying resilient through it all. Whether you’re here to learn more about MND, find inspiration, or connect with someone on a similar journey, this vlog has something for you.
Thank you for being part of the Diagnosed Dad community. Your support helps me raise awareness about motor neurone disease and share my story with others.
👉 Got a question you’d like me to answer in a future video? Drop it in the comments below!
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Please ask any questions to answer in future videos in the comments below 👇🏻
I’m 43… one of my best friends has recently been diagnosed, so I’m mostly watching for awareness. I appreciate you putting out these videos.
His diagnosis seems quite similar. Diagnosed MND, but has also been told that he has a slow onset
May God carry you through this difficult journey, each and everyday ❤❤🙏🙏🙏
For several months, I feared I might have MND and was followed by a neurologist. After five months, I received a clear EMG and was diagnosed with benign fasciculation syndrome (BFS). I discovered your channel during that time, and I just want to say how much I appreciate your videos and admire you, James. Your strength and dedication to raising awareness are truly inspiring. Thank you for everything you do. Wishing you all the best!
@@TheDabbb thank you so much and I’m so glad I helped and even more glad you haven’t got mnd.
Thanks james. What you are doing is so brave and I honestly think you are incredible for the work you are doing. I would love to learn more about the friends and family who help you every day, and what they do to help - from small things to big. I feel like carers are so often the unsung heroes, and it would be lovely to share impacts on them and all the things they do. ❤️❤️
thank you so much. you're so right, carers need more recognition. will be definitely introducing my helpers to the channel. watch this space.
Hello James, your channel as in my recommendations today, and I’m glad it did. I don’t have ALS but I have several autoimmune diseases and severe neuropathy which has caused something called foot drop. I have to wear braces. I also have essential tremors, I shake and have spasms. I am keeping you and your family in my prayers 🙏❤️🙏 ~ Sandy from Pennsylvania USA
@@sandyaw3057 thank you for being here x
Thanks so much for sharing your journey. I will keep watching because I have PLS mnd. My hands are affected too now. My disease is supposed to progress slower than ALS but seems to be moving faster than expected. My heart goes out to you and your family. Best wishes
In my job as a Speech and Language Therapist with adults I often mention your videos when I work with people diagnosed with MND and their families. Thanks for all you are doing James 😊
@@muddypeppapig2994 that’s amazing thank you for doing this, I’m honoured x
Thanks James for all the work you are doing to raise awareness, share information and challenge misunderstandings even as you deal with the changing world of MND ALS not to mention your family and little children. Your films just feel like sitting in a room with you as you talk to a friend, accessible and open.
@@rutharnold6057 thank you so much. I’m certainly trying to raise lots of awareness this year. I’m so glad you feel this way about the video as that is how I am trying to make them.
Great video James. Looking forward to the next one. My question is - what adaptations have or haven’t worked for you so far?
Thank you for sharing 🙏
Good luck to you James. I will be following you. My Mum had FSHD it started with fasciculations (twitching) in her arm. I think that people generally know very little about neurological conditions.
@@Josephine-tu3hb thank you. Sorry to hear this about your mum.
The more I can do to raise awareness the better I think. Please share video to help reach more people and help raise awareness xx
@@DiagnosedDad Shared far and wide James😘
How were your pathological reflexes, were the reflexes raised, and were the Babinski and Hoffmann reflexes positive?.
@@Ruslanmagomedov-c9u all I have been told is I have lack of reflexes
Hallo to you, I send you my very best wishes. And I’ll be liking all your 2025 videos (I know!). ❤.
Thank you 🙏🏻
James with your progression of MND, did you ever have a period of slight improvement in your range of movement/motion in any part of your affected limbs?
Wishing you all the best and appreciate you showing what your going though. Awareness, education and hopefully a cure.
Deb
@@debwright200 thank you Deb. Will answer this on a future video. Stay tuned x
How did the weakness in your arms manifest? Lifting things, putting pressure on them? Could you give some examples of your day to day challenges you had at the time with that weekness? Keep the Great work Sir, admirable.
@@ajs5018 great question thank you. Will answer this on next video which will be around my frustrations living with mnd.
@@DiagnosedDad looking forward to it, thank you ❤
James I have limb onset also. I lay down on my bed and i find it easier to do things with my arms and hands. also what are you doing to use the computer ? I get pains in my upper Arms when trying to type. i now use my Phone as a keyboard.
Keep up the good work James, on here and Instagram.
@@howitismnd thanks for the support guys x
At least you have national health care. In the United States we have very expensive health caree. Best wishes.
@@helengarrett6378 you would be surprised what private health care gets you compared to NHS.
You have definitely found a purpose in life, James. You have already helped so many with the charity work and greater awareness. I wish you all the best for 2025.
@@teresa2638 thank you so much Teresa x
Does this disease run in your family???
Yes my Nan and her brother both died from mnd however mine isn’t genetic and classed as sporadic after a full panel mnd blood test.
Did you mean Frontotemporal dementia..FTD? The actor here Bruce Willis has it.
@@sandyaw3057 yes that’s it I think
i have als and i have frontotemporal dementia.
@@semedselimbeyli I’m so sorry how are you doing?
you have stiffness in the neck, neck, and a feeling of pressure from the neck to the teeth to the nose.crackling sound in the cartilages jaw crackles when the jaw moves
@@Ruslanmagomedov-c9u not really no
Hello, they diagnosed this disease with a needle emg..
They don’t technically diagnose you with an EMG. The EMG helps eliminate other diseases before a diagnosis of mnd.
@@DiagnosedDadSo, how did they diagnose you and make a clinical examination?.
@@DiagnosedDadThe exact diagnosis of this disease can be made with a needle emg?
@ th-cam.com/video/6yLHhEDdnmk/w-d-xo.htmlsi=pYWFzqJPsz7DcbAV
Are you using riluzole, edaravone?.