Friday September 8th 2006
One year ago I heard three little letters that would change every aspects of my life, G.B.S. I was lying down in an emergency room feeling my limbs getting heavier and heavier, not being able to move them and having a lot of pain. While I was lying there trying to figure out what was happening to me and why no one five hours prior could have told me that this was going to happen. That’s right, five hours before I was talking to a surgeon about a two weeks post op check up for a burst appendix in the same hospital that would receive me paralyzed and feeling like my life was ending. I had left the hospital to go to a friends place for a boy’s night. I walked from the hospital to the apartment about one kilometer and by the time I got there my legs where tired and heavy and I crashed on the couch completely exhausted. My second friend showed up and at this point I was in and out of sleep (I think). After barely being able to walk to the washroom and back, we had an interesting argument. They thought it would be a good idea to go to the hospital and me, not. Well they won and we ended up at the emergency room. At this point I have to thank them. If this had happened at home I would have been on the floor for days or worst. Thanks guys.
I was transferred to a different hospital for a CT scan of the spine to rule out spinal cord damage (none was found). And then I was transferred to one more hospital for a longer stay, a lot longer, close to nine months. By morning rounds the neurologist and his students were able to explain to me what the three little letters meant: Guillain-Barré Syndrome. Wow I had a name for this and better, they had a name for this. Using all the medical jargon that they knew they told me that they didn’t know exactly how I got it, how long it was going to last or how long I was going to be like this. Now for those of you who don’t know what Guillain-Barré Syndrome this is a brief description.
So what does this mean to the non-medical people of the world? It’s a scary disorder that has no treatment, and no cure. How would you feel hearing this while lying on a hospital bed not being able to move? I can tell you it’s a very scary moment it one’s life. But the support staff at this hospital was great to help me threw some of the emotional ups and downs I was going threw.
I was then transferred to a different floor to begin some physiotherapy and occupational therapy. This was the first step to recovery and began some of the most emotional trials of my life. Remembering what I could do just a few weeks before and now seeing what I couldn’t do was absolutely down and out. After about a week I was told I was going to be placed on the waiting list for a local rehab center and was transferred to a waiting floor. This would be my home for the next three months.
Now the New Year began and a new challenge in my road to recovery. Hours and hours of therapies and time to reflect on how lucky I was, yes, that’s right lucky. I met amputees, quadriplegics that were in worst situations than me, and it gave me strength to work even harder to get all I could back from what G.B.S. took from me. Thanks Tim.
In July I was told about a boat cruise supporting GBS, well I was able to go and I met Serge Payer. We talked for a while and he hosted a great event. He has become an advocate for victims of GBS and for a very young man he has the courage and strength to bring this illness out to the public.
Serge, Thank you for all the help you bring to the victims of GBS
My name is Sylvie and I am from Beauceville, which is located approximately one hour south east of Quebec City. I studied in hotel business; it gave me the opportunity to work in different parts of our country from New Brunswick to our Canadian Rockies, Alberta, to finally ended up here in Ottawa. Working 70 hours a week and also teaching in Hotel Business kept me in the fast line, just like I always lived my life.
On October 6th 2004, 2 days after receiving the keys of a brand new house, I woke up with both my hands numbs and tingling wondering how I had slept; I was very tired. I thought it was due to the stress of moving into our new home and everything that comes along with it as well as the beginning of a sinusitis. I did not have the time to worry about that, I had to get my new place organized, my dad was coming do the painting in a few days, the decorators, our friends and family were coming up to help us move…
On that day, I went with my friend Len to the new house with a first load of small boxes and various products to clean up. Not much was accomplished that day, I told him about my hands but also begged him not to worry my husband with that. As the day progressed, I noticed that it was coming more and more present but when I took my shower that night, I quickly realise that something bad was happening! The water felt like someone hammering nails into my skin. I had no more alternatives but to tell my husband about my situation. After talking with Dr Mom and the info health line, I headed out to the Hospital emergency where I was seen within few minutes. I thought it could have been medication intoxication but the Physician announced me that it was most likely MS, to go home and seek for a referral with a neurologist from my family Dr., and to drive safely!
It took me at least 15 minutes to get out of my car and get inside my house; so many things went through my mind… My husband, my 10 ½ months old daughter and I headed out to the clinic WAY before it opened just to ensure we would be seen right away…my right fore arm started to bother me and my legs were heavy but I assumed it was because of my exhaustion. My family physician was not in agreement with the prior possible diagnosis received the night before. Quickly she offered a choice between calling 911 or get my husband to drive me to see a neurologist at the emergency. She said: “I am not a neurologist but it appears to me like GBS”. I thought it sounded a lot better then MS but had no clue what she was talking about…but she insisted on not wasting anytime on details, if it were the case I would get to learn a lot more about it… Unless you had it, know someone that had it or work in the health industry, you do not have any idea of what she was talking about!
At that time, we had no idea of the magnitude of the crisis coming ahead. So we arrived there at 10:30 AM and within a few minutes the nurse had taken my information related to my condition and I went back in the waiting area. Approximately 15 minutes later when the Dr called me in, I could not get up! My husband turned around and asked me if I was coming…they were calling my name! But my legs did not move! I just could not get up! Then as you all know, what you don’t know and don’t understand is scary! I was petrified…suddenly I was in another world in a nightmare filled with a large amount of specialists not telling me anything since the clock was ticking but when they spoke to me, I DID NOT UNDERSTAND!!!
They decided to transfer me to another hospital, The Ottawa General, I got there around 1 pm on the verge of a nervous breakdown! Even the paramedic did not know about that disease!!! By 3 pm I was paralysed from the neck down and scared to death. I was in the observation intensive care of the neurology department for approximately one week; they were worried about my lungs since the volume of air was totally insufficient. I had my name on a waiting list for tracheotomy but the fine line was never crossed, I stabilized and just got better.
It’s on the second day that I realised how bad my situation was. I spent the morning analysing everything that was happenning but in my head they were going to give me some treatment and I would be out the door in a week or so and back to my “normal” life. When my husband arrived, with my parents, the Dr asked him to sign a release on what action should be taken in case of a cerebral death. I then realized the severity of my health issue.
I received a 5 days treatment of IVIg immunoglobulin administered intravenously which is a blood product made of antibodies extracted from the plasma of over one thousand blood donors.
And the next days, tests were performed such as MRI, spinal tab and an electromyogramme. They then had all the proof for the diagnosis. Some repercussion occured after my spinal fluid was retracted wich brought some massive headaches and nausia; spinal patch was performed in order to stop these side effects. Everyday my husband brought my daughter for a visit, it was so nice to see them but also hard to be just lying there, unable to take them in my arms.
A Dr came to explain to me how my transfer to the rehabilitation center would be like and what was going to happen to me there. At that point my hands and arms were moving sporadicly and it was challenging to lift anything but they were moving! I asked him repeatedly when were they going to teach me how to walk again but I could not seem to get a straight answer. I pushed until he told me that he did not believe that I would ever walk again. I must admit that I had a completle melt down after his departure. After I simply decided that I did not have the desire or the time to just lay there and feel sorry for myself. I thought about my daughter..she needs me and I need to be there before for her!!! The separation from her affected me more then I can ever explain. I missed seeing her explaining her day to her dad coming back from work, to discover her new house, to see her beautiful eyes opening and the cuddling moment that came after, to put her to sleep at night….there were a lot more moment that were missing and that was upsetting me.
I got the physiotherapist called up to my room and asked herto teach me how to walk again…well I needed to be able to sit up first. I was lifted up slowly after a little while, out of determination I made a fews steps! It’s very odd to talk to yourself, requesting your right foot to move ahead several times in order to obtain the expected result. I put myself back in severe pain and absolutly no movement for 3 days but I had prooven him wrong…I rest my case!
I was at the rehabilitation centre for 3 months and an out patient for another 18 months. All through my rehabilitation I was focussing on getting better of course but also staying positive; it was not so simple. I had someone helping me in my house for 6 months since my house is a 3 story. I had some very big plateau that created a cloud of negativity and brought depression moments. I took narcotics for 24 months and till this day I am taking medication for my pain.
I am living with chronich pain 24 / 7 which taught me a lot about tolerance and happiness. Every 3 weeks I need to attend the chronich pain clinic in order to get some pain relief. I get put to sleep and injected various medications that make my brain believe for a short period of time that I don’t have any more pain. It does’nt take the pain away but takes it to a more tolerable level. I still have to attend physiotherapy bi-weekly and massage therapy.
Even if we don’t wish any harm to any one, good things came out of this life threatening moment for me, don’t get me wrong, it was not the greatest time of my life. I am now helping some people that are put on my path; without GBS, I would never had met them. I am here this evening to tell everybody that is willing to listen how a disease that is truly unknown can affect some life. I am proud of what I accomplished, it was hard mentally and physically but I came out a better person. There are still days when I wonder why but quickly I realise that it gave me the opportunity to be present in my daughter’s life, to help others and to hopefully raise enough money so one day a cure could be found so nobody else have to go through hell while they are still amoung us!
Kaylann and Sylvie Daigle learned how to walk at the same time.
Kaylann was 11 months old. Sylvie, her mother, was 27.
At an Ottawa rehabilitation centre, Sylvie would be strapped into a harness and held up by two people as she struggled to put one foot in front of the other...
FULL STORY
