Michelle's Journey with CMT
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Hello, my name is Michelle Deschamps. I am 30 years old and was born with a neurological disease called Charcot Marie Tooth. Very few Saskatchewan doctors have heard of CMT, let alone had experience dealing with the disease. It deteriorates the myelin sheth around the nerves, causing loss of sensation as well as deformaties in both the hands and feet.
My journey with this disease has been long and complicated. At a young age I had no balance and had difficulty walking. As I got older things got harder and more serious. My hands began to shake badly, my feet became so deformed I could not wear regular shoes , I experienced tremendous amounts of pain and had difficulty walking on my own, resulting in numerous falls and injuries. Charcot Marie Tooth is a progressive and degenerative disease wothout a known cure so I was left with very few options available as it progressed very quickly in my case. By late 2015 the constant pain had become so unbearable some days that my doctors recommended a double amputation so that I might get some relief.
After a bad fall and twisting my ankle I was forced to wear a splint to give it some support. It was by chance that the casting clinic doctor asked if I had ever sppken to Dr Rees in Saskatoon. A few weeks later I received a call ftom his office and on October 26th 2016 I was blessed with a surgery that is hoped to help a lot of my issues with pain and the shape of my foot. It will allow me to wear proper shoes , help me to walk straight and without as much struggle and SIGNIFICANTLY reduce pain.
The surgery was supposed to be an hour and half but turned into a four hour surgery. They drilled holes through the bone to reroute several tendons, realeased and reattached each tendon to each toe individually using screws, shifted my heal using a metal plate as well as inserted another in my big toe and shaved the metatarsal on top of the 15 incisions required for the surgery. Recovery will a long process as we have to do each foot individually. I can't have any weight on it for 3 to 6 weeks and then I start rehab for 6 months to relearn how to use this foot as everything had changed.
After the rehab we will start the next foot and we will do this journey all over again. The doctors believe I could be stable and fully functioning within 2 to 3 years. This will be a whole new life filled with first time opportunities and even the possibility of going back
to work, something I miss whole heartedly.
My husband was recently hurt at work and has been off for a while now. Because of his injury he is not able to help as much as I need during this recovery time, thus requiring the assistance of homecare.
Transportation to and from Regina to Saskatoon is also a necessity that has also become a concen. On the night of my surgery my husband was almost struck by a drunk driver in the parking lot of the hotel we were staying at. In dodging the vehicle he smashed into a cement pillar. The driver took off immediately after the collision so my husband could not get a plate number and he was informed by hotel staff that that entrance did not have cameras and even if they had, they were such bad quality that you wouldn't be able to make out the plate anyway. We are now without a vehicle until SGI decides if it is fixable or a write off. In the meantime he has doctors appointments a few times per week and I have to get back up to Saskatoon next week for a casting change.
We are reaching out as we are in a very difficult time and in need of assistance. With my husband not working and only receiving WCB, we are not able to cover the extra costs needed such as Homecare , a vehicle, cost of gas to and from Saskatoon and missed work when my husband can return.
We are forever grateful and appreciate any help no matter the size. Updates will be posted regularly for those who wish to know.
My journey with this disease has been long and complicated. At a young age I had no balance and had difficulty walking. As I got older things got harder and more serious. My hands began to shake badly, my feet became so deformed I could not wear regular shoes , I experienced tremendous amounts of pain and had difficulty walking on my own, resulting in numerous falls and injuries. Charcot Marie Tooth is a progressive and degenerative disease wothout a known cure so I was left with very few options available as it progressed very quickly in my case. By late 2015 the constant pain had become so unbearable some days that my doctors recommended a double amputation so that I might get some relief.
After a bad fall and twisting my ankle I was forced to wear a splint to give it some support. It was by chance that the casting clinic doctor asked if I had ever sppken to Dr Rees in Saskatoon. A few weeks later I received a call ftom his office and on October 26th 2016 I was blessed with a surgery that is hoped to help a lot of my issues with pain and the shape of my foot. It will allow me to wear proper shoes , help me to walk straight and without as much struggle and SIGNIFICANTLY reduce pain.
The surgery was supposed to be an hour and half but turned into a four hour surgery. They drilled holes through the bone to reroute several tendons, realeased and reattached each tendon to each toe individually using screws, shifted my heal using a metal plate as well as inserted another in my big toe and shaved the metatarsal on top of the 15 incisions required for the surgery. Recovery will a long process as we have to do each foot individually. I can't have any weight on it for 3 to 6 weeks and then I start rehab for 6 months to relearn how to use this foot as everything had changed.
After the rehab we will start the next foot and we will do this journey all over again. The doctors believe I could be stable and fully functioning within 2 to 3 years. This will be a whole new life filled with first time opportunities and even the possibility of going back
to work, something I miss whole heartedly.
My husband was recently hurt at work and has been off for a while now. Because of his injury he is not able to help as much as I need during this recovery time, thus requiring the assistance of homecare.
Transportation to and from Regina to Saskatoon is also a necessity that has also become a concen. On the night of my surgery my husband was almost struck by a drunk driver in the parking lot of the hotel we were staying at. In dodging the vehicle he smashed into a cement pillar. The driver took off immediately after the collision so my husband could not get a plate number and he was informed by hotel staff that that entrance did not have cameras and even if they had, they were such bad quality that you wouldn't be able to make out the plate anyway. We are now without a vehicle until SGI decides if it is fixable or a write off. In the meantime he has doctors appointments a few times per week and I have to get back up to Saskatoon next week for a casting change.
We are reaching out as we are in a very difficult time and in need of assistance. With my husband not working and only receiving WCB, we are not able to cover the extra costs needed such as Homecare , a vehicle, cost of gas to and from Saskatoon and missed work when my husband can return.
We are forever grateful and appreciate any help no matter the size. Updates will be posted regularly for those who wish to know.
Organizer
Michelle Deschamps
Organizer
Regina, SK
