Sharing The ALS Journey to Inspire and Educate, Diagnosed Dad

Diagnosed Dad

On the podcast, Diagnosed Dad (formerly called Beyond MND), we celebrate the unwavering spirit of individuals who have triumphed over motor neuron disease, or MND. Join us as we dive into their incredible journeys of resilience, adaptation, and rediscovering joy in life. 

I Am ALS

The I AM ALS Community is an amazing group of people that helps the ALS community in countless ways. One of my goals in life is to be able to donate a thousand dollars a month to ALS research. This money will help find better treatments and a cure for ALS.  While I’m not able to do that just yet, I know that the money I do donate to the I AM ALS community is doing so much good. If you want to help the ALS community, a simple but amazing way for you to do that is to donate to I AM ALS. 

I AM ALS is a patient led community that provides critical support and resources to those living with ALS, as well as caregivers and loved ones. They raise awareness and advocate for the ALS community’s needs. They’ve also been able to increase federal funding for ALS research. I am ALS has also helped revolutionize the development of treatments and cures for ALS. 

I AM ALS has been able to do all of this because of the donations they receive each year. If you’re looking for a way to make a difference in the ALS community, Donating to I AM ALS is a great way to do it. There is a link to the I AM ALS donate page at the top of this blog. 

Sharing the ALS Journey

Unfortunately, about four and a half years ago, I was diagnosed with a condition called Motor Neuron Disease, also known as ALS.

After I was diagnosed I found myself in a position where I no longer could work because of the condition. I wanted to try and raise awareness in a really professional way. I wanted to get the word out and spread awareness of the condition. It was amazing how many people still didn’t know what Motor Neuron Disease or ALS actually was.

I decided that as well as sharing my ALS journey on social media platforms like Instagram, Facebook, TikTok and most recently youtube, I also wanted to do something on a more personal level. I realized that I wanted to share not not only my ALS journey, but also other people’s ALS journeys living and dealing with the condition.

Everyone may not necessarily want to be on camera so I thought a podcast was good avenue. I set it up and started interviewing people. That’s really the reason why I started. 

Raising Awareness for ALS

My hope is that this podcast helps build the awareness of trying to find and hurrying along the process of getting a treatment.

Still to this day, we’ve got one treatment. That has been the only treatment for about 25 – 28 years. Nothing has advanced. We’ve got no other treatment for ALS/MND.  That treatment is only expected to give between three to six, up to twelve, months of extra life to live with the condition.

I want to bring people’s attention to the lack of treatment. I can only do that by sharing my ALS  journey and other people’s journeys. Also the people that are dealing with it as well. This includes the wives, the husbands, the caregivers and the things that they have to go through.

A Sense of Purpose

I suppose the other reason for doing it is that I was the breadwinner of the family. I worked full time in a jobI absolutely loved.  I retrained to become a professional qualified barber. With limb onset ALS, I can’t hold a pair of scissors because it’s starting to get a bit dangerous. I’ve then gone from doing that to being a stay at home dad. 

I can slowly start to see I can’t do certain things. I found the podcast and sharing my journey gave me some purpose to to carry on. It’s given me something to focus on each day.  It only seemed right to share my journey with it to hopefully inspire others.

Informative and Educational

I have had feedback that it comes across really informative. It’s a raw conversation.  One example is that I did an interview with two ladies that were looking after their husbands. They were a lot further down the line with their condition. Their husbands were wheelchair bound and bedridden. The wives were their full time caregivers and unfortunately, one of the husbands passed away only about two weeks ago.  It was a conversation where they felt like they could sort of potentially offload their frustrations. They could speak openly about what they’re feeling in terms of being the caregiver of someone with this terminal illness.

When I put out that episode, the feedback I got from it was unbelievable. It was shedding a light on not only the condition, but also the caregivers. It spun a whole new vibe and look for the podcast.

Sharing The ALS Journey of Others

Up until that point, I was finding my feet with it and sharing my ALS journey. I explained from my first symptom to my diagnosis. I shared what I’ve had to do around the house to adapt it for when I go into a wheelchair. Things like vitamins and supplements that I’m taking were also topics on episodes. When I spoke to the two ladies that were looking after their husbands, it was quite refreshing. It gave a whole new aspect of the podcast rather than it was all about me. 

Moving forward I’m definitely going to be concentrating on interviewing others rather than just speaking about my  journey.  I do that on other platforms and there’s only so much you can talk about. 

If I’ve got someone else that I can talk to about it and share their story, it just gives a different perspective. 

You can probably put ten people in one room with ALS in different stages of life and they all would probably have a different story to tell. How it started for them, symptoms, and how quickly or slowly it’s progressed would vary for everyone. The ALS journey is different for each person. 

It gives another dimension to the podcast, which I think is what I’m going to be focusing on going forward  

Favorite Diagnosed Dad Episodes

I was doing a YouTube video and I was to do a top five video on my podcast, I would say that would be number one. I would say that is my favorite. They’re all my favorite but in terms of how it went and what I got out of it, that is my favorite. 

I find doing my podcast almost like free therapy. It’s nice to connect with people that are going through the same thing. 

The latest one that I did, I spoke to a lady in the Republic of Ireland.  She was a nurse and now she is a health professional who specializes in gut health. She jumped on my podcast and I interviewed her.  She was one of the first people after my family to know about my condition. She’s a family friend and she gave advice about certain foods to eliminate and what certain foods to take more of. That’s probably my next favorite because we got so much information. It was nice not to talk about my condition. I’ve had a couple of people reach out and say they have been in contact with her as well. They said that she is as nice as she came across on the podcast and gave then really good information, 

Not Recommended for Children 

I always say that it is unsuitable for children. If a parent is listening to the episode and their children don’t know that their mum or dad has ALS  they might hear a scenario and worry. They might hear things and realize, my dad can’t do that or my dad’s speech is a bit slurred or my mum’s foot doesn’t work very well and she’s in a wheelchair but they don’t know anything and it could worry them. 

That’s the reason why I stopped children from listening. In terms of explicit content, maybe apart from the second episode that discusses intimacy, I would say they are all okay for younger ears. There’s no there’s no swearing or anything. 

Connect with Diagnosed Dad

The website has all of my episodes on it.  I do have a website which is beyond nd.co.uk that has my episodes on there. It is also on all the major podcasting platforms: Spotify, Apple, Amazon. 

I’m also doing a Youtube channel. I’m going to be doing videos on YouTube that are mainly about me. It’s going to be light hearted, fly on the wall type videos. The first two episodes are quite informative so I’ve sort of painted a picture for people. But going forward it will be simple things like I needed to change a light bulb. Iit will be just a day in the life, fly on the wall type things.

I did a video the other day, filming the back of my little girl’s head while I was just playing a board game with her. They are real life things rather than structured and scripted videos. That’s why I’ve branched into YouTube. I’m going to combine the interview podcasts that I’ll be doing and use that video to put on Youtube as well. 

Help Spread the Word About ALS 

I’d love people to follow me on every social media platform. I’m not big headed at all, but  I think if more people were to engage and follow my journey they would then see some information that might help them.  They would know someone that’s going through it and can get ideas for things they might be having trouble with. It’s simple things like that. My instagram and TikTok is under just James Smith. 

I want to utilize the  slow progressive nature of my ALS because a lot of people have it very quickly and unfortunately don’t live that long. I want to utilize my time as best as I can to share the ALS journey so that people can understand what it’s like to live with.