my Spotlight guest tonight shares seline’s struggles Robin Cook lived with the debilitating symptoms associated with stiff person syndrome for years before receiving treatment that allowed her to reclaim her life for more on what it’s like to live with this rare condition Robin joins me now from North Bay Ontario thank you so much for taking the time thank you for having me you know we have heard from Selen Deion in great detail what this was like for her describe for us what it was like for you what it was like for me well stiff person syndrome can um vary on a degree of spectrum and uh for myself personally I went from a uh in my mid-30s I went from uh very high functioning um in a career uh great quality of life and um very quickly deteriorated fast and uh some of my first symptoms were in regards to a quick decline in weight loss unintentionally decline executive function cognitive function and obviously very high muscle tone and I can specifically remember back I’m actually a saxophonist with the 22 wi military band and I was playing in a concert in 2012 for armed Force’s day and during that concert there was uh a lot of commotion going on airplanes flying around a lot of noise and one of the biggest things I remember was the inability to be able to get my breath it uh it felt like a like like a python was squeezing my chest I wasn’t able to get the breath that I would normally be able to project out through that horn and and play and also the weight of the horn and felt three to four times heavier so it was you know extreme pain through my my neck my shoulder my back and when I made it through and made it back to work that day it was within minutes that I sat down at my office desk that I um my full torso went into spasm my full neck my full jaw went into spasm wow I was essentially you know barely able to open my mouth enough to call for I had to email somebody in order to get somebody to pick me up and take me home and um and that was my last day of work in in 2012 oh wow at that time so and and so you know did you go through this same struggle trying to get diagnosed and also what changed in your life from you know before the onset of stiff person syndrome compared to when you were diagnosed yes so they say the average of time of diagnosis for Sith person syndrome is 7 to 20 years wow I guess I could say I feel sorry five to seven years I I guess I could say I do feel fortunate that it did take five years even though five years does seem like a very very long time it was a very um isolating time for me in the sense of that I progressively got worse worse um to the point where you know you start to not want to go anywhere you see the world happening around you you know you can’t do the activities that everybody else is doing and fear that your body may go into spasm and then people be wondering what’s going on and you won’t even be able to tell them what’s going on because you don’t actually even know what’s going on so it’s you know becomes a very lonely environment and um and not a lot of of um you know not unintentional but not a lot of empathy because it’s very hard for people to understand what’s what’s happening when you don’t even know what understanding yourself so when I was got to my worst point I was um got to the point where I went from a cane to a walker and uh into into a wheelchair and at that point I was uh even fearful to be at home alone because I would be going into back arching spasms that could last 10 20 minutes and you could only take so much conventional therapy at home to try to release these spasms where I would have to be rushed to the hospital where it was uh safe to take more medication in order to release these spasms on a regular basis this must have been so difficult for your family as well absolutely absolutely and you go from one day being fully independent to the next day being you know having to rely on everybody for everything so so Robin you know once you finally were diagnosed you then received experimental stem cell treatment for this what was your experience like going through that treatment and and how effective was it yes so I was very fortunate to be connected with a neurologist in uh in at the Ottawa Hospital and also to um be recommended for an experimental stem cell transplant I was the fifth person in Canada to undergo this specific it’s called an autologous hematopics cell transplant for stiff person syndrome and some of the one of the words that does resonate with me still today was um one of the Specialists had said to me that you know you need to be sick enough to get it but also healthy enough to survive it because it really is that last stop when everything else has failed and the process of going through the stem cell transplant where they harvest my own stem cells they clean them purify them they use very strong chemo to essentially destroy my immune system that was attacking my body and once that’s done they reintroduce my clean purified good stem cells and and um that essentially was called my new birthday that was the reboot of my new immune system wow on that day so essentially I ended up with a diseased free immune system but still a very long recovery to go as I was very immune compromised I had to rebuild that immune system from scratch and you know today I’m just a little over seven years old immune system wise yeah it I wonder you know what what what you think Seline Deon has done being so open about this and what it has done to her life uh in in terms of raising awareness about stiff person syndrome I think it’s a difficult decision to make because it it it does put yourself in a very vulnerable vulnerable position in terms of everybody knowing what is going on with your s personally in terms of these every patient that lives with stiff person syndrome I think has brought great awareness to the disease itself I mean any rare disease is very difficult um I can say myself personally I would always be hesitant to even say the word stiff person syndrome because I would get that Blank Stare I would get that feeling of you know did that really happen is this really the thing are you making this up and um since uh slnn did uh indicate that she did have stiff person syndrome I’ve noticed that Dynamic has actually changed so actually very shortly after she she made the um announcement over social media I received phone calls and texts from people that I least expected saying you know hey you know I’ve heard this I think this is what you have can you can you now tell me about it I’ve noticed when I have had to go to the ER for a few minor things that when I have to give my medical history it’s not kind of that again just dismissive of I don’t really know what that is it’s now more inquisitive oh I’ve heard about that oh tell me more about that oh this is very interesting and I think it will bring a lot of awareness uh hopefully a lot more research to the disorder and uh hopefully with the aim of having people um patients diagnose more quickly so that they can get the treatments faster so that they can have a better quality of life and and not get to the point where I had to get where my last stop was a stem cell transplant uh Robin wish I could talk to you longer we are out of time but thank you so much for coming on Canada tonight and and sharing your story and and raising awareness yourself about stiff person syndrome I appreciate it thank you for having me
Robyn Cook, a woman diagnosed with stiff-person syndrome, says she went from ‘very high functioning,’ to ‘quickly deteriorating.’ It took five years to get a diagnosis, a ‘very isolating time’ while the illness progressively ‘got worse and worse.’ Cook has since received treatment and has seen improvements.
»»» Subscribe to CBC News to watch more videos:
Connect with CBC News Online:
For breaking news, video, audio and in-depth coverage:
Follow CBC News on TikTok:
Follow CBC News on Twitter:
Find CBC News on Facebook:
Follow CBC News on Instagram:
Subscribe to CBC News on Snapchat:
Download the CBC News app for iOS:
Download the CBC News app for Android:
»»»»»»»»»»»»»»»»»»
For more than 80 years, CBC News has been the source Canadians turn to, to keep them informed about their communities, their country and their world. Through regional and national programming on multiple platforms, including CBC Television, CBC News Network, CBC Radio, CBCNews.ca, mobile and on-demand, CBC News and its internationally recognized team of award-winning journalists deliver the breaking stories, the issues, the analyses and the personalities that matter to Canadians.
