I spoke to Andrew O’Reilly who is organising and taking part in a cycle CMT Cycle Ireland from 10-11 August 2024 along with his cousin Dr. Robert Prior to raise awareness and funds for CMT research and Dr. Robert’s work in the area in the University of Bonn.
CMT stands for Charcot-Marie-Tooth disease which is a hereditary motor and sensory neuropathy of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. The disease is the most commonly inherited neurological disorder, affecting about one in 2,500 people.
Both Andrew and Robert have the condition CMT along with some other family members of theirs.
Further information about cycle: https://tin-us.org/global-ride-for-cmt/
Near FM, 1 July 2024.
and now on the line is Andrew O royy Andrew is doing a fundraising cycle next month to raise awareness and money for CMT Andrew welcome to nfm thanks so much s thanks again for having me I really appreciate you taking the time to help me raise awareness about CMP and so yeah big thanks for that all right K thanks Andre I was talking to you about email over the last few days and you were telling me your story in relation to CMT up to the present day and your and your recycle next month uh for the benefit of any of our listeners Andrew who don’t know your story and what CMT is could you tell them a bit about your story in relation to CMT and indeed what CMT is yeah of course yeah so we suppos I’ll start with what exactly CMT is and so it stands for Shar Mar T and they’re just professors that um discovered the disease H over a 100 years ago um and basically it’s a genetic disorder of the longest peral nerves in the body so these are the nerves that connect to the muscles in your hands and feet so the muscles in um me particularly my Cal my forearms are severely affected and so the muscle constantly relies on signals from your nervous system to survive and once these signals become impared to a genetic mutation or perhaps an injury the muscle gradually weakens and breaks down and so it’s the muscle’s connection to its processor that is the issue in CMP rather than the actual muscle itself and then I so yeah to go into a bit about me um and my start with CMT so I was diagnosed with CNT when I was 10 years old um and it initially started to affect my my lower uh half my body so from my knees down and mainly my feet um so my legs began to weaken in my cast and but really know the the the disease in my feet and they started to become like def I was really walking on the side of my feet that was causing a lot of pain and a lot of ankle injuries and and yeah many many difficulties as a kid who really loves SPS and football so it really did impact that as As I Grew Older and but then I suppose that takes me up to H my first encounter with surgery with CMT so as I mentioned I was I was walking on uh the side of my feet and the surgery then was a to straighten up my feet and also to kind of hold my ankle in place because I don’t actually have any movement in my ankle so I can’t move my my foot left or right right or up and down I can’t from like to the ceiling those kind of things so the surgery was to um strengthen up my foot and you give it that a part out so H I could walk a lot smoother and a lot more comfortable and so the surgery was um the first one was when I was 15 and there was a tendon transfer and a par bound Fusion so essentially they they move tendons around my spot and they broke my ankle and and put it in place and there’s to hold specific Parts in place in both of my feet but that was um that was through my school years that was quite difficult they supp to to handle when you’re going through school you’re a teenager going through uh your teenage years and it was in the past across the two surgeries probably up to six months and that was difficult but as a child I always just found way to you know power on and and get on with it and and manage it and so they did with that and and they continued on after the surgery then I I would wear and two St we something called afos so basically there a support so I can I can walk a lot with a lot more balance and help to not trip up F because I now have something called foot drop whereby my to hits the ground before my heel but that can cause you a lot of it can cause Bri not focusing or if un dad ground and so yeah I’m wearing them up to this day and then in the meantime I so that was when I was 15 and 16 and then few years later up into my early 20s my hands began to get worse whereby the use of my tumb I didn’t have I couldn’t really move my tumb around too much um my fingers begin to kind of close in they begin to claw over but the first surgery that was suggested from my hands was that they could do a tendon transfer where they transer tendon from my finger into my tomb gives me a bit more usage of the Tomb and and it definitely helped it was a successful surgery and but then that kind of takes me just on the surgery side of it it takes me up to H recently June just earlier in June this year I was it was suggested that I have more surgery on my hands because my wrist has become um very weak I can’t even actually hold my hand up with my wrist so like it’s very hard for me to lift things or or do things with my hand so now they suggested having more surgery whereby they put a a rod basically from my forearm up to the bottom of my hand and that kind of hold it in place and give me support in that way and yeah so that’s kind of how CMT has affected me physically and the surgeries that I’ve had to go through and I might potentially have to go through in the in the upcoming months and then yeah just due to the progression because CMP is a disease that gets worse as we get older and in the past I would say five to six years the progression is my H in my hands has been very rapid and that has because it’s only you know mental health issues and challenges and so well some of with CMP really is dealing with all the physical difficulties it’s going it’s highly likely that uh we will and I did encounter you know mental difficulties as well trying to manage okay it sounds like a very physically painful illness are you on like morphine right Andre no so we’re not prescribed any pain medication the the doctors H have always said you know take some pain medication if you need it but generally I like I don’t touch wood um you know there are there are boats where I used to get really a lot of pain in my love back from the way I walking if I’m not we my support Tropic can cause pains in different parts of my bodies CU you know when I’m walking I’m essentially walking with like my hips and my you know the all the top parts of my legs because I don’t have movement in my ankle to kind of push off that and so yeah like my hip area my lower back can get quite painful at times but it’s it’s a funny one you know because we we need to to keep busy and and keep moving to try and prolong prolong the effects of CNT but then you know when we do when we do move it can cause pain but it also you know helps to to prolong those effects as well so like just thinking of it now like but like um on a scale of 1 to 10 with 10 being the most painful like how would you rate the condition of CMT to be to you yeah well are in in in different times it’s been well above a 10 you know going through um going through the surgery as a teenager they they were like extremely painful and when I came out the other side they weren’t just you know rooting surgery I think the the first couple the the surgeries on my feet for I think five or six hours I was I was asleep for and and getting operated on so they’re very H long surgeries and the pain yet through them at 10 and then in recent years progression in my hands I mean I get a lot of p in my forearms and my hands if I’m doing just regular things that are are easy for a lot of people you know I’ll be scrolling on my phone I get a lot of p in my hands and and at the highest point that’s certainly at a 10 um even just the the big event this summer is a cycle but when I M for really long bik ride my hands and my forearms can really hurt after that because I’m not really holding on to grip The Handlebar so yeah I mean like CMT it’s quite difficult in the pain Department way to manage it whe pain killers and kind of things it it sounds I personally have never really suffered from physical health problems you know so I’d be devastated if I any kind of physical like I’ve never even broke a leg so uh or I haven’t broke any finger any bone sorry so I’m not I’m not too off with the physical pain so I okay um okay Andrew I interviewed Rob who is my cousin and he’s your cousin as well on the other side of the family I interviewed him on this program last year about CMT can you remind our listeners Andrew for those who don’t know uh a bit about who rob is and his work yeah of course so as you mentioned he’s um my cousin as well and Rob was diagnosed I believe with CMT when he was around 13 um and then when after his school years he decided to dedicate his life to into find therapies and hopefully at the end of the day a cure for CMT he went to study at man university gway university and then Al Belgium and now he’s C currently working in in h Bond University in Germany and he he’s researching uh therapies and hopefully a cure in the future for forc and we can eventually wipe this thing out yeah he’s do amazing workers apparently um okay okay Andrew can you tell me more about the bike cycle you and Rob have next month yeah yeah definitely so um I really can’t wait for it so the B from Dublin to at Lan that’s going to be the first that’s going to be the stop over H at Lan it it’ll be about 135 kmet from uh Dublin to at L and then we’ll stay overnight there and the next day we set off again first thing the next morning and it’s between 90 to 100 clampers then that day as well um and then yeah when we get to goway we we’re all H celebrate hopefully and there’ll be maybe some s bod so we be rested up but yeah that that’s today at the cycle so you know leading up to the cycle now I’m trying to do my very best to promote it um to raise awareness for one raise money for research uh as well and so we have we’ve got a lot of people who have already offered to support the B sh you know offering prizes for an event that will be holding on the 26th of July um and yeah offering donations as well I a bit about that as well if we’d like but that’s mainly the cycle on the day that’s that’s the most on the weekend that’s the most exciting part for me um and yeah the lead of now is the is the spreading awareness and letting people know what CNT is and and what we go through and what I go through living with CM okay what were I missed what you said there about uh donations or something you can talk more about that or something what yeah yeah yeah so so at the end of July actually I just um recently mentioned on the page so the CMT cycle Ireland page on Instagram on Facebook so I’m holding a fundraising night and and I believe I think this will be where a lot of our our money is raised for for the fundraiser on hting music Bing go down in St Judes in Temple o and so yeah in terms of people supporting the cycle it had uh many companies offering offering prizes for the event I’m going to have a minimum of 16 across the music games and then I I’ll be rles on the night as well and and people can get tickets to the event through through the page H the CMT cycle arand page and and yeah that that’s going to be a really really great night okay okay let go Andrew can can you tell our listeners today who are h t yeah definitely so that’s therapies for inherited neopies so that’s a a nonprofit organ ganization in the US and they um the founder of that St oonn he also has CMP the same type of CMT as myself and my family so they’ve been doing work to to raise money for research for CMT for I believe over 20 years and there Reon my team D down for one yeah Rob Rob knows Steve very well through over his years in research of CMP um and also they’ve agreed they’re making sure that 100% of the proceeds are down TNT research there’s not going to be any overhead cost or anything like that 100% of what what’s right will be gone fully to the research and okay and Al Steve oon he’s going to sorry he’s going to be participating in the cycle virtually we couldn’t find a date whereby the Tre us could do from Dublin to go so he’s also going to be doing it in the US or wherever he is at the time like the 250 K as well um the money you and Rob Ray for tin uh will that be going to the organization general or specifically for Rob’s work or what’s the story yeah yeah good question so that’s one of the reasons yeah the main reasons why we chose is because they’re making sure that it’s all down to Rob’s research right to his um research lab and he has a yes he has a specific project lined up um where he’s going to be taking some of my CES and he’s going to isolate our sales and transfer them into H St and then you’ll be able to test them H in the lab for therapy trmc yeah okay I find this amazing um okay Andrew what will it achieve or what do you and Rob hope would achieve by isolating your sales and modeling them and Rob LA and so they’ll be able to from there they can mimic the neuromuscular system the my neuromuscular system they can mimic that in the um in the lab and they’ll be able to test it with different uh drugs to see what can either maybe reverse the effects of CMT or perhaps slow it down so essentially yeah get allows them to do broke screening against BMT in the lab and see uh what works best against it or what what works against it at all because yeah currently there are no real treatments of cures right now with ples and yeah as forties to help to help assist day-to-day living really and make it more comfortable okay hopefully you and Rob will be winning the Nobel Prize in the next few years um yeah maybe um okay Andrew it’s great talking to you today in near FM uh just before we go So the plan is over the next six weeks to uh raise awareness of your cycle is it yeah exactly yeah so that’s the big plan so here I am hopefully the list material down follow the CMP cycle earing page and you can donate to the um the project in the there’s a link in the bio and I also have a video on how to donate as well well if people AR in a position to donate I mean sharing sharing any details about my page on the social media or even through word m to their friends will be a massive massive because the further the further I can spread this the more people will take not and hopefully then you bigger people with companies might come in and help with sponsorship or our donations to the event as well so it can all be found on the cycle page and yeah donations and share sharing the the projects are both massive