Jason, Liz, Lilly and Poppy are the Liversidge Family.
Jason is terminally ill with both Motor Neurone and Fabry’s Disease. Lilly and Poppy also have Fabry’s disease.
This website is here so that Jason and his family can share both the good times and the bad, in a frank and honest way. Follow them on their journey and be a part of Jason’s mission to leave something behind so that his children will never forget him.
The rules are simple – treat each day as if were your last. Live, love & laugh, but above all else, take every opportunity, every minute that you can, and use it for Making Memories…
Well what an interesting few weeks, just a quick note to say that it has been brought to my attention that our website is less than mobile friendly. So as a result we are in the process of redesigning the site and any ideas are more than welcome.
The main news is the release of the video series of our trip to the Bendrigg trust courtesy of the Masonic charitable foundation. The video series explains how and why we went.
Recently I had an unexpected trip to hospital. I was completely unaware of this due to sepsis. I didn’t even know I had been blue lighted to hospital. This was Wednesday and by Friday evening I was home against doctor’s orders, it’s now Wednesday one week on and near enough normality has resumed well depending on your definition on normal.
So you will see 5 videos for the Bendrigg trust and 1 for a radio interview we did this week for radio Humberside, so on a long cold night we have cured your boredom. Please don’t forget your website comments
So my second attempt at this post, reason – I am so busy I do it in bits, forgot to save it and windows rebooted, #epic failure. So here goes!
Exciting times have been and are coming. What have we been up to? Getting on the news twice in one week. Firstly the premier Inn saga, this for us cast a big shadow over our invitation to meet Princess Anne. The premier Inn situation is ongoing and in true style my wife has the bull by the horns and isn’t letting go. In true making memories style we didn’t let this spoil our London trip totally. We had the honour of meeting Simon and Emma Adams, Simon is an MND legend now latterly living on technology. It was great to meet them and swap stories and chat about drones. We are keen to meet up and do some flying and spend more time together as two MND families.
We got to meet the Princess Royal who heard about some of our achievements also thought our home village sounded windy, I refrained from telling her it is most mornings. We also met Jeremy Vine; Liz admitted to him she didn’t know who he was. However I did and through Liz asked him why I had been on most other things but not his radio show? After he had heard about the premier Inn along with some things we had done he said it was a distinct possibility we could get. Then he asked us to do an interview for social media, featured below.
In my last post I mentioned a marathon, well not only am I opening the Hornsea 3rd marathon but I am doing it, pushed by my Marie curie nurses. So anyone local is welcome to come along on 8th April and support Marie curie or if not, maybe buy a daffodil this month to support the great daffodil appeal, you may be lucky enough to spot us on their advertising.
I also spoke about a spot more Abseiling; this is down gaping gyl pot hole approximately 100meters deep with a rope change in the middle. Why you say? This time to support cave rescue and to fund a trip for a similar family to ours to the Bendrigg trust in Cumbria, featured in our Masonic charitable foundation video series.
So that was a little past and future but just to prove life can be even more difficult than just MND, here is a summary of our weekend. Saturday – fabry’s conference in Salford, for us most of the way along the m62 which was closed until 7am that morning, the night before we decided not to go. 7.30am Liz decided we’re going, 11am we arrived just in time for coffee. This was a very educational session and informed us of new treatments and even a cure in the form of gene therapy. This however can’t help me of my mother but it can save Lilly and Poppy who also have this extremely rare disease. We got back home around.
Sunday – big day for Poppy and even bigger than I’d planned. 10.30am we went to Derby about 2 hours drive with 2 girls not knowing why. We arrived to let Poppy see her 5th birthday present, a 5 week old beagle puppy that we collect in 2 weeks. Briefly please spare your thoughts on this till my next post in a week or so. I sat in the van while they met the puppy due to accessibility issues, 20 minutes later they came out and I got to meet her too. Off for Sunday lunch, err no; the battery on the van was flat. 1hr later the rac man comes and soon jumped us off, lunchtime , err no, Poppy had a very sudden migraine followed by vomiting and then to sleep, alarm bells rang, my carer drove while Liz checked her breathing. Once at a+e she had come round. After examination she had passed out due to the migraine. That was scary. Lunchtime was now dinner and we arrived home at 9.30pm not the day I planned but thankfully Poppy is back to normal
It’s been a while since my last blog post. Unfortunately there isn’t any amazing challenges or videos to report.
Instead the news is more about the challenges of living with motor neurone disease. Thankfully in the last 6 months my condition appears to have remained fairly static, even minor improvement in kidney function and night time breathing. I would like to say this is due to medical advice, however given I drink excessive amounts of energy drink and refuse my ventilation machine on a night, I have to say currently my actions infuriate my ventilation nurse and dietician, there again I was never one for rules or advice.
News on challenges is in. The arrangements are being sorted for an abseil down gapping gyil pot hole in the Yorkshire dales with a drop of around 100m. My other challenge is more hush hush, it involves Guinness world records and some major technology oh and large balls, I’ll borrow some.
Having a good laugh is one of my reasons for being positive. The last 3 or so months have been testing for us as a married couple and a family. Especially over the festive period. Basically we have been relying on my long term carer Thelma who I have to say has been fantastic, Pam has also been amazing even though she retired earlier last year she helped us out. Due to having been two carers down for various reasons. We receive direct payments, which mean we employ our own staff. We previously tried agency but that wasn’t for us. We have tried new staff but we haven’t had any luck. We have managed to find one new carer in the last few weeks and it appears to be working really well, fingers crossed. Since I started writing this post, we have found another nice lady who is hopefully starting in a couple of weeks, I say hopefully as I don’t want to jinx it lol. The situation became very stressful especially for my amazing wife Liz. It’s been a testing time for our relationship. I feel particularly bad as right from the start I never wanted Liz to have to look after me despite our vows.
So tomorrow sees a trip to hospital for a supra pubic, its minor surgery, well anything down there is bound to be minor. This should make life easier for everyone given I can have a number one anything up to 7 times in 24hrs. More pit stops than a Le Mans race car.
So I bid you all adieu for now and see you on the other side of 24hrs in hospital.
It has been a while, as normal we have been super busy. In fact to be honest I don’t have a clue where to start. Since mount Snowdon we have done several separate photo shoots with Marie curie, one was for their latest campaign and is featured below. While filming Snowdon I also did some separate filming for a story video which is due for release anytime now. A couple of weeks ago we were photographed as a family for their annual daffodil appeal early next year. Filming and photographs have now become second nature to us as well as letting the media in to our lives. Raising funds is important but the need to raise awareness is greater.
Raising awareness I feel is vital to ensure that one day we get a cure, many people just simply have never come into contact with mnd, please remember anyone can get it at any age. This brings me to the parliamentary reception in London we attended to help raise issues relating to the cost of mnd with mp’s. Can I add that out of Yorkshire only one mp attended. All had gone well , we had got there the day before and went on the eye, bonus as Liz got on for free and our journey on the tube had gone really well. The return journey however was a different story, we were a little late leaving to get our train, fair enough let’s get a cab, err no, despite black cabs Having ramps it wasn’t a great surprise that my chair wouldn’t scale the near cliff face of a ramp, it was déjà vue mount Snowdon again. Leg it to the tube, got on ok, couldn’t get off, delayed everyone by 10 mins, had to get of a further 5 stations down the line to eventually get back on to the station we started at, then I was giving the status of mip, see if you can work that out, final leg was on a tube to kings cross that didn’t even stop there but as I was an mip they made it, we only arrived 2 hours late for our train.
We managed to arrange a meeting with our local mp graham Stuart, who we met and had a productive meeting. We explained about extra costs as well as the need to scrap reassessment for pip for terminal illness.
Just this weekend Liz and I attended the mnda regional conference at which we presented https://mytube.mymnd.org.uk/ to the attendees along with Cathy Soreny, it was well received. It was a great chance for networking and a great excuse for a chat. We, I say we but really it was Liz, volunteered us for another presentation about intimacy in mnd, so watch this space.
Back to filming now, we receive help from the Masonic charitable foundation and as a result of this they asked if we would like to go to the Bendrigg trust in Cumbria. It’s an outward bound centre for the disabled. Of course we would lol. One condition – we can film you all. The Masonic charitable foundation recently funded aspects of the new acorn building. The results of filming will be 3 five minute videos for social media in January I believe.
So what did we get up? Canoeing, zip wire, Abseiling, camp fire, tube slide, archery, rock climbing, indoor caving and swinging. I was able to do everything as were the girls. We had an amazing time and met Johnny and stig. We put our own video together below. They say things come in 3’s, so here is ours, approximately a mile from the bendrigg trust we were forced of the road by post man pat, again you can see in the video. I hadn’t even got to the first activity when I acquired a puncture on my wheelchair. Fortunately for me the maintenance guys got me a new tube and off I went, thanks guys you were great. Last but not least, in the van to come home and it wouldn’t start, jumped it off to find we had no indicators or wiper. Thanks to the rac guy that sorted us out.
A massive thanks to the Masonic charitable foundation for letting us go, and to the bendrigg trust for giving us an amazing time, we hope we can come back soon.
Well what a few weeks it’s been! Abseiling, raising loads of money for charity and making choices about my future.
First a brief summary of the abseil, I don’t see a need to dwell on it to long as the media did a good job of covering it. Look North did a great piece thanks to Jo Makel and it’s in our video section as well as at the bottom of this post. To sum it up it was a fantastic experience for both Liz and I, it was a little chilly as the hundred or so spectators will vouch. A fabulous turn out and unbelievable support from an army of helpers. A special thanks to Humberside fire brigade, HFR solutions and the Humber bridge board for the massive support, they all gave to make it happen. The final figure is yet to be confirmed but without gift aid it’s close to beating £8000.Through out my adventures I get to meet some pretty amazing people and generous ones, this was no exception, some people may remember a poem was written about the Yorkshire voice, by Cohl warren-howles, well we finally got to meet her and her husband Saul. They travelled from Stratford apon avon along with their two friends to not only watch the abseil but to present a cheque for £1000 from The old tramway pub, what an amazing thing to do and a pleasure to meet them.
The question of what is next has been banded around; there is always a next, lol. The very early stages of the next challenge are being explored, so until further information is gathered I won’t be announcing anything.
Matters of health, seems weird to say that, given just about all of me is knackered, lol, I do laugh because if I don’t I’ll cry. Some of you may remember I mentioned a tracheotomy, well we had the appointment with the consultant and the outcome was very positive and we are looking to have it in the next 3 or so months. I am not phased by it, in fact I was very pleased with the answers to my questions, one was “aside from sky diving is there anything I can’t definitely do? “The answer was you can do sky diving for me. That answered that, not sure my respiratory consultant would agree.
The consultation was videoed and hopefully so will the operation as part of a documentary been made, but it may be used as a stand alone video like my feeding tube you tube video to help others, although these are not routinely offered in the UK.
I am now coming to the point where I need to take action regards toileting, not a pleasant subject, but top and bottom of it is on a night I can currently sit on the edge of the bed, not for not much longer I suspect. We have other means but it means lying down to wee, I just can’t do it lol, apparently this is a common male problem. A solution may have been found but it means another hole in m, I am getting close to more holes than a tea bag.
Slightly better news and it’s a trip to London for the British Medical Awards, more news to follow. Also it’s the heart of East Yorkshire awards this week and I am shortlisted for the charity champion, fingers crossed.
I now have an appointment with ENT with regards to my trachy, quite quick, in September. I have compiled a list of questions, I a few might be a bit silly, a teacher once told me providing its relevant there isn’t such a silly question. I kind of figure as it will be the next part of my MND journey I need to be prepared.
It’s now less than 2 weeks to the abseil, Liz as ever is working hard to make it a success financially. She has a bouncy castle, cake stalls and face painting organised but still has much to do, any help or offerings would be gratefully received, and all the funds are going to the MNDA and the fire fighters charity. The MNDA is fairly obvious, we decided on the fire fighters charity because back in December last year 5 firemen from the Bridlington station went to Edinburgh to donate their voices so I could have a synthetic voice that sounded like m. Other guys went too and I am extremely grateful to all of them, but as they were one group who stepped up at the last minute we thought it was rather fitting, also Humberside fire brigade are helping to make the abseil happen.
I understand that once I have a trachy, I will be limited to what I can do, really!!! People who know me from my younger days know I like speed. Since mount Snowdon I have an urge to get into the book of Guinness world records, couple this up with jokes about pimping my ride. There can only be one thing to do, make the fastest wheelchair. With a few helping hands this could happen. So watch this space.
Time flies when you’re having fun, which is exactly what we are doing. Mnd doesn’t stop us at all, that includes going camping.
We went back to the Yorkshire dales for our wedding anniversary. Camping is something we used to do a lot, before the girls came along and indeed something the girls now love, nature is something they are fascinated with. We visited Tan Hill, the highest pub in England.
It still has the same landlady who was there when we got married there with a sheep called Clorisser as a ring barer.
Tracy the landlady had the girls collecting glasses for free drinks. Tracy also sponsored me £100 for the abseil of the Humber bridge. It appears there is a theme going on with heights lol.
Now the interesting bit, sleeping, we had two pods, basically a shed with electric. We had taken air beds and sleeping bags even for me lol. We also took the mobile hoist and as you can see it was rather amusing.
However after a few hours of me on an airbed with Liz, she stated for a virtually paralysed man you don’t half wriggle a lot. Matters were made worse as I am on water tablets and I can’t pee laid down, in to a bottle, Liz finds this rather bizarre. After a not so great nights sleep it was a new day, fry up and Thelma reminisced about our holiday to Turkey, I don’t think she was to ecstatic about camping lol, especially when she stated if we went camping again she was busy lol.
We went to one of our favourite spots on the Pennine way to see the tractor and let the girls have a go. The weather was great and was lovely for a picnic; the 4×4 wheelchair came in handy as the day of making memories wouldn’t have been possible with out it. All in all it was a fantastic time away making memories.
Then to make it even better on the way home, we found out I have been shortlisted for a heart of East Yorkshire award. We knew nothing about this or indeed who nominated me. September is likely to be rather busy as we have a trip to London for the British Medical Awards, we assisted with the mytube website and it has been nominated.
I receive so many kind messages and comments that it is nearly impossible to respond to all of them, I’d like to say a huge thank you to everyone of you. Two words get used a lot, inspiration and legend. I don’t really see any of it; I just go about my business building memories for Lilly and Poppy along the way. Also raising awareness is a big point of it, just yesterday Liz had to explain what Motor neurone disease. Having fun along the way is also vital; it helps me to keep going.
Well after Mt Snowdon you would think some rest might be in order, errr no. Planning for the Humberbridge abseil is well on the way for 10thSeptember.
Meanwhile my health continues to deteriorate at a slow pace, of which I am grateful for as it gives me time to plan for the future, whether it is an adventure, trip away or even the next step in keeping me alive in the way of a tracheostomy. My breathing has got worse at night, I use a none evasive ventilator for around two hours when I can tolerate it. The crooks of it is I simply hate it, stick your head out of a car window at 60 mph and that’s a fairly reasonable description. I use my nebuliser daily and the same with my cough assist. These help keep my lungs clear and expanded. As my diaphragm weakens I will need more help breathing. I have now been approved for an elected trachy. This I have to say doesn’t faze me, it’s more the constant supervision I will need. I have briefly asked other treachy users a few questions but they lead to more questions lol. So when I meet the ENT dude/dudette I will go armed with a list of questions. I think my biggest fear is how much it will stop my antics. Although as you may have gathered, pushing the boundaries of what is possible is my job in life. Also I am having more choking episodes so the bulbar symptoms are showing.
Mobility wise again things get worse, prolonged time leaning at my pc causes neck trembling. We have now decided a spinal neck brace is the way forward when in the 4×4 wheelchair and a slightly less intrusive model for the pc when needed.
I still attend the gym twice a week and hydrotherapy if I have the time lol.
We are camping next week, yes camping, all be it in a pod which is basically a wooden tent with a concrete floor. It’s the first time we have been since I started to suffer with mnd (knowingly). We are of course taking all the medical equipment including the hoist, should be good and relive memories and make new ones as we are going to where we got married and it is our anniversary.
I have to say despite all that that is thrown at me I still love life, enjoying new experiences and meeting new people.
Please keep your eyes on our Humber Bridge abseil page for event information as it unfolds and to bid on a chance to abseil yourself of the bridge