https://drive.google.com/file/d/0B5mJDLNdoziHd1B0WHBqQzZfbHM/view?usp=sharing
(Photos of Linda's progress during her recovery posted in the Adult Stem Cell Advocates group on LinkedIn: https://www.linkedin.com/groups?mostRecent=&gid=6512052&trk=my_groups-tile-flipgrp)
My Progress to June 1, 2014:
For those who don’t know me, my name is Linda Friesen from Tisdale, Saskatchewan in Canada and I have, or had Secondary Progressive MS. Just a year ago I was in a wheelchair. Until I found this experimental therapy, there wasn’t a lot to be hopeful about. I qualified for this special procedure using autologous stem cells, the “Combination Therapy” protocol through Regenetek Research in Canada. The procedure itself is in Pune India because of restrictions on stem cell research here in Canada and in the US. Even though the stem cells come from our own bodies, the work that Regenetek is doing can’t be done here in Canada because of regulations. But with my deteriorating health because of a sudden turn for the worse, I was willing to go anywhere to get this done so it was off to India! I was there in the hospital research clinic from the middle to the end of October last year, 2013. I will give you the before and after up to where I am today, June 2014. My hope is that it will help someone understand why I made this choice and how this procedure has helped me.
To start with, I feel it’s important to give my history of where I was to begin with, right back to when it all started. It’s important to know how disabled I had become and how fast I was deteriorating. I had a car accident May 28th, 1999. I was hit directly in the head by the bumper of five-ton truck that came through my car like a knife through butter right to where I was sitting. I probably should have been killed or paralyzed. My vertebra at C2 was cracked and two others were damaged. I had right shoulder, right ribs, nerve damage, a punctured lung and hearing damage. As the days went by after the accident, my biggest pain was really bad headaches which progressed into daily migraines. Within weeks of the accident I started to develop “black-out” type migraines and I had a deep very intense pressure in my head, which slowly got even worse, if that was possible. My other physical damage healed somewhat but the headaches just kept getting worse. The doctors thought I was having two different types of migraines along with eyesight problems. They finally decided to do new MRIs but that wasn’t until 2001. What they found on those MRIs changed my life. The swelling from the car accident trauma around my brain was gone, but they found that my brain was full of lesions. Another round of MRIs confirmed that I had MS. I understood it to be the relapsing/remitting type.
My disabilities were slow in developing at first, but I started to experience difficulty moving my legs. Also the sight in my left eye was getting worse. With each relapse, I experienced worsening in my legs and arms and then my left arm started getting weaker. The pressure in my head was getting worse and I was getting brain fog to the point I could not think to do simple the simple everyday things I took for granted. I mixed up numbers and words. I would forget conversations, meeting people and could not remember parts of entire days. So the doctors put me on the regular MS medications because it’s just what they do. They told me that it would stop the disease progression from quickening and I wouldn’t feel my symptoms. What did I know? This was all new to me.
I reacted very badly to Copaxone and Rebif. The Rebif almost killed me. In 2010, I had the experience of meeting another woman who confirmed that the same thing happened to her on Rebif and she told me that she came close to dying as well. So as soon as I heard that there was an alternative treatment for MS because of something called CCSVI, I was all over it! I decided to go with the liberation treatment in Costa Rica in 2010 and afterwards, was lucky to feel the good effects for over two years. I know from speaking to many others that 2 years is unusual for the liberation therapy. Who knows, maybe it would have lasted longer but my luck ran out in December of 2012 when another car accident again ruptured my C2 vertebra and cracked it once again, also deflating the jugulars.
After that second accident I really started spiraling downhill fast! My MS immediately became secondary progressive and each week things got to be more and more difficult. Within a few months I ended up in a wheelchair. Just to be able to get to the bathroom was a challenge. My eyesight got much worse, left arm, and most of all my migraines were certain to be the black-out type…EVERY DAY. I couldn’t do much or handle very many things, even taking care of myself was difficult. Mental concentration became a very challenging thing. I wanted to go back to Costa Rica and get my jugular veins opened again but from what everyone was telling me, I knew the chances of keeping them open was even lower the second time. But I had to find some relief. My daily pain was incredible.
My online research brought me to Regenetek Research. I read their site over and over. They were studying the use of autologous stem cells for MS. That would be my own cells. They said on the site that by using stem cells from my hipbone they would multiply them to a larger number that would be able to replace the dead cells in my brain and spinal cord. They needed the larger number grown in the lab because as adults, we don’t have the right type of stem cells or enough of them that will be able to replace the nerve cells that were destroyed in the brain due to MS. I understood that they did both the liberation therapy and the stem cells and all that sounded good to me. Dr. Doug spent hours on the phone with my husband Brian and me just so that we could understand. It was just information. He never tried to convince us, but we knew anyone with this dedication was not acting selfishly.
I qualified to go to Regenetek in India with the help of Dr. Doug in August and by October, I was in the hospital in Pune. The treatments were everything I expected as Dr. D did a great job of explaining everything to me like I said. Over two weeks I was given 250 million cells all together. I had 25 million in each of my jugulars, and after the stem cells came back from growing in the lab in Mumbai, another 200 million were injected into my central nervous system through a lower lumbar needle. I didn’t expect what happened next for sure. I started walking and haven’t stopped since! This is my own personal miracle and it gets even better.
So what else has changed over the last 8 months? Many things. My headaches were far less intense even a day after the very first stem cell injection into the blood vessels in my neck veins. As of today, migraines are very few, and not even close to the intensity of before. I believe that most of my headaches still come from my neck injury from the car accidents, not the MS. I can tell that when I do too much and my neck gets irritated, that’s when most of the headaches come on. My eye sight is improving all the time. I still have a hard time adjusting close up but that might be an age thing. Anyway I did have this problem after the car accident so again, I don’t think it’s MS. My left arm has its full strength back. The tight band feeling around the arms is getting better all the time and just about gone. My legs are back to full strength and even now developing more strength than they ever had because I’m working out. The numbness is almost all gone from my feet and numbness that started below the knee down the leg is almost all gone. The tight band below the knee is getting better. The “Charlie Horse” type pain I had throughout the body is gone. My feet and lower leg still has issues. The tendons can get tight and sore. I have to keep up with my stretching. But I am pushing my muscles, working against the injury to my spine, I know it will take time to sort itself out. And it is constant progression forward.
I also have pain in my back after I fell and hurt my shoulder blade and T8. I would expect that this minor pain will get better as the back injury heals. I have tightness in my arms because of this, but any type of spinal injury can cause difficulties in these areas. This did not show up until the injury and I don’t think it has anything to do with the MS. Between working out, the nearly fatal car crashes, and the MS, I’m constantly trying to sort out what’s what in my body. I’m looking for any signs that my MS is sending me a symptom. But you know what? I’m pretty sure I haven’t had one since the very first stem cell injections.
Now 8 months later I can say am getting back to being myself a lot faster than I ever thought possible. In fact, I never thought I would feel normal again because my body was so banged up and paralyzed. The most amazing thing for me is that I have started working at a part time job! And it’s one that I need to be on my feet a lot of the day! It has been twelve years since I have been able to work. As my MS progressed, the first thing that went was my ability to retain information and make sense of it. Even though I appeared normal in other ways, I could not follow simple instructions. And that made me unemployable.
Over the past few months, everything has changed. The cog fog has disappeared and I know I am sharp. I’ve always been able to speak well, but now I can write, read and understand a work task I need to know, and retain it. It seems like a small thing but those MS patients who are reading this know exactly what I am talking about. For my new employer to tell me that I retain and learn things very quickly, it is just the confirmation I need to know that my mind has improved too. And this has just really happened very recently proving that the improvements continue long after the treatment. I look forward in being able to work full time in the future, and I it’s just the physical injuries from the car accident that is holding me back, not my mental ability.
To say that I’m grateful to Regenetek and Dr. Doug Broeska doesn’t seem to be enough. But I AM truly thankful for what they have done for me and the others in this study. I know my future looks incredible and I am living my life again. There is nothing I can’t do and there is no sign of my MS. And this is not like after my liberation therapy. That helped with symptoms for sure but with this therapy my recovery is complete. My advice to those patients who have had this therapy and are still recovering, keep working hard with your physiotherapy and you will see results. Call me if you need a boost. For others who are just hearing about this therapy for the first time I urge you to look into it. If I can do it you can too!
(Photos of Linda's progress during her recovery posted in the Adult Stem Cell Advocates group on LinkedIn: https://www.linkedin.com/groups?mostRecent=&gid=6512052&trk=my_groups-tile-flipgrp)
My Progress to June 1, 2014:
For those who don’t know me, my name is Linda Friesen from Tisdale, Saskatchewan in Canada and I have, or had Secondary Progressive MS. Just a year ago I was in a wheelchair. Until I found this experimental therapy, there wasn’t a lot to be hopeful about. I qualified for this special procedure using autologous stem cells, the “Combination Therapy” protocol through Regenetek Research in Canada. The procedure itself is in Pune India because of restrictions on stem cell research here in Canada and in the US. Even though the stem cells come from our own bodies, the work that Regenetek is doing can’t be done here in Canada because of regulations. But with my deteriorating health because of a sudden turn for the worse, I was willing to go anywhere to get this done so it was off to India! I was there in the hospital research clinic from the middle to the end of October last year, 2013. I will give you the before and after up to where I am today, June 2014. My hope is that it will help someone understand why I made this choice and how this procedure has helped me.
To start with, I feel it’s important to give my history of where I was to begin with, right back to when it all started. It’s important to know how disabled I had become and how fast I was deteriorating. I had a car accident May 28th, 1999. I was hit directly in the head by the bumper of five-ton truck that came through my car like a knife through butter right to where I was sitting. I probably should have been killed or paralyzed. My vertebra at C2 was cracked and two others were damaged. I had right shoulder, right ribs, nerve damage, a punctured lung and hearing damage. As the days went by after the accident, my biggest pain was really bad headaches which progressed into daily migraines. Within weeks of the accident I started to develop “black-out” type migraines and I had a deep very intense pressure in my head, which slowly got even worse, if that was possible. My other physical damage healed somewhat but the headaches just kept getting worse. The doctors thought I was having two different types of migraines along with eyesight problems. They finally decided to do new MRIs but that wasn’t until 2001. What they found on those MRIs changed my life. The swelling from the car accident trauma around my brain was gone, but they found that my brain was full of lesions. Another round of MRIs confirmed that I had MS. I understood it to be the relapsing/remitting type.
My disabilities were slow in developing at first, but I started to experience difficulty moving my legs. Also the sight in my left eye was getting worse. With each relapse, I experienced worsening in my legs and arms and then my left arm started getting weaker. The pressure in my head was getting worse and I was getting brain fog to the point I could not think to do simple the simple everyday things I took for granted. I mixed up numbers and words. I would forget conversations, meeting people and could not remember parts of entire days. So the doctors put me on the regular MS medications because it’s just what they do. They told me that it would stop the disease progression from quickening and I wouldn’t feel my symptoms. What did I know? This was all new to me.
I reacted very badly to Copaxone and Rebif. The Rebif almost killed me. In 2010, I had the experience of meeting another woman who confirmed that the same thing happened to her on Rebif and she told me that she came close to dying as well. So as soon as I heard that there was an alternative treatment for MS because of something called CCSVI, I was all over it! I decided to go with the liberation treatment in Costa Rica in 2010 and afterwards, was lucky to feel the good effects for over two years. I know from speaking to many others that 2 years is unusual for the liberation therapy. Who knows, maybe it would have lasted longer but my luck ran out in December of 2012 when another car accident again ruptured my C2 vertebra and cracked it once again, also deflating the jugulars.
After that second accident I really started spiraling downhill fast! My MS immediately became secondary progressive and each week things got to be more and more difficult. Within a few months I ended up in a wheelchair. Just to be able to get to the bathroom was a challenge. My eyesight got much worse, left arm, and most of all my migraines were certain to be the black-out type…EVERY DAY. I couldn’t do much or handle very many things, even taking care of myself was difficult. Mental concentration became a very challenging thing. I wanted to go back to Costa Rica and get my jugular veins opened again but from what everyone was telling me, I knew the chances of keeping them open was even lower the second time. But I had to find some relief. My daily pain was incredible.
My online research brought me to Regenetek Research. I read their site over and over. They were studying the use of autologous stem cells for MS. That would be my own cells. They said on the site that by using stem cells from my hipbone they would multiply them to a larger number that would be able to replace the dead cells in my brain and spinal cord. They needed the larger number grown in the lab because as adults, we don’t have the right type of stem cells or enough of them that will be able to replace the nerve cells that were destroyed in the brain due to MS. I understood that they did both the liberation therapy and the stem cells and all that sounded good to me. Dr. Doug spent hours on the phone with my husband Brian and me just so that we could understand. It was just information. He never tried to convince us, but we knew anyone with this dedication was not acting selfishly.
I qualified to go to Regenetek in India with the help of Dr. Doug in August and by October, I was in the hospital in Pune. The treatments were everything I expected as Dr. D did a great job of explaining everything to me like I said. Over two weeks I was given 250 million cells all together. I had 25 million in each of my jugulars, and after the stem cells came back from growing in the lab in Mumbai, another 200 million were injected into my central nervous system through a lower lumbar needle. I didn’t expect what happened next for sure. I started walking and haven’t stopped since! This is my own personal miracle and it gets even better.
So what else has changed over the last 8 months? Many things. My headaches were far less intense even a day after the very first stem cell injection into the blood vessels in my neck veins. As of today, migraines are very few, and not even close to the intensity of before. I believe that most of my headaches still come from my neck injury from the car accidents, not the MS. I can tell that when I do too much and my neck gets irritated, that’s when most of the headaches come on. My eye sight is improving all the time. I still have a hard time adjusting close up but that might be an age thing. Anyway I did have this problem after the car accident so again, I don’t think it’s MS. My left arm has its full strength back. The tight band feeling around the arms is getting better all the time and just about gone. My legs are back to full strength and even now developing more strength than they ever had because I’m working out. The numbness is almost all gone from my feet and numbness that started below the knee down the leg is almost all gone. The tight band below the knee is getting better. The “Charlie Horse” type pain I had throughout the body is gone. My feet and lower leg still has issues. The tendons can get tight and sore. I have to keep up with my stretching. But I am pushing my muscles, working against the injury to my spine, I know it will take time to sort itself out. And it is constant progression forward.
I also have pain in my back after I fell and hurt my shoulder blade and T8. I would expect that this minor pain will get better as the back injury heals. I have tightness in my arms because of this, but any type of spinal injury can cause difficulties in these areas. This did not show up until the injury and I don’t think it has anything to do with the MS. Between working out, the nearly fatal car crashes, and the MS, I’m constantly trying to sort out what’s what in my body. I’m looking for any signs that my MS is sending me a symptom. But you know what? I’m pretty sure I haven’t had one since the very first stem cell injections.
Now 8 months later I can say am getting back to being myself a lot faster than I ever thought possible. In fact, I never thought I would feel normal again because my body was so banged up and paralyzed. The most amazing thing for me is that I have started working at a part time job! And it’s one that I need to be on my feet a lot of the day! It has been twelve years since I have been able to work. As my MS progressed, the first thing that went was my ability to retain information and make sense of it. Even though I appeared normal in other ways, I could not follow simple instructions. And that made me unemployable.
Over the past few months, everything has changed. The cog fog has disappeared and I know I am sharp. I’ve always been able to speak well, but now I can write, read and understand a work task I need to know, and retain it. It seems like a small thing but those MS patients who are reading this know exactly what I am talking about. For my new employer to tell me that I retain and learn things very quickly, it is just the confirmation I need to know that my mind has improved too. And this has just really happened very recently proving that the improvements continue long after the treatment. I look forward in being able to work full time in the future, and I it’s just the physical injuries from the car accident that is holding me back, not my mental ability.
To say that I’m grateful to Regenetek and Dr. Doug Broeska doesn’t seem to be enough. But I AM truly thankful for what they have done for me and the others in this study. I know my future looks incredible and I am living my life again. There is nothing I can’t do and there is no sign of my MS. And this is not like after my liberation therapy. That helped with symptoms for sure but with this therapy my recovery is complete. My advice to those patients who have had this therapy and are still recovering, keep working hard with your physiotherapy and you will see results. Call me if you need a boost. For others who are just hearing about this therapy for the first time I urge you to look into it. If I can do it you can too!