'Help Deb Defeat MS'
Donation protected
Opening Up:
Sharing my MS story has always been a very difficult thing. I used to call it “Mashed Potatoes” because I didn’t even want to say the words, “Multiple Sclerosis .” With many of you, I haven’t mentioned MS at all. Up until now, unless you’re a part of my daily life and see me regularly, I would’ve preferred to never mention MS. During the relapsing-remitting stage I was able to conceal it because you couldn’t see the disease. I could easily forget that an arm or leg was numb and live my life positively (and blindly) with the huge MonSter lurking behind my craftily carved wall of, “deniability.” It's still difficult for me to share my story so openly now, but I want to do it. I believe it's the right thing to do under these circumstances. I believe that now there’s HOPE!
I have multiple sclerosis . I had my first episode right after I turned 30. I'm 51 now. I had the relapsing-remitting form of MS for the first 10 years and then it gradually turned into secondary-progressive MS. I have tried the following medicines: Copaxone, Avonex, Tysabri and LDN (low dose naltrexone) to slow the MS, but to no avail. MS is a persistent, relentless and debilitating disease.
Me Today:
With 21 years of cumulative damage, I am now rapidly losing my ability to walk, balance, feel good, enjoy life and sometimes process thoughts. MS usually affects one side of the body. It affects my right side. I have foot drop, severe balance issues, trouble walking, deep fatigue and my right hand is very weak. I use a cane almost always now, including in the house.
We recently bought a Chrysler Town & Country mini van and had it retrofitted with an interior scooter lift, so I could ride my scooter and have more mobility on a daily basis. I can't walk across the street unassisted. I take daily naps of 2-3 hours and sleep approximately 10 hours per night yet I never feel well rested.
Paul (my husband) describes me like I'm a cell phone battery that can’t get a full charge (and I only have about 50% charge to begin with). When I use up that 50%, I need to rest just to do some of the basic daily activities like laundry, cooking, showering, taking care of Zoë (my 10 year-old daughter), being a sound and present wife and running errands. I limit what I do on a daily basis to about one thing per day.
My Future:
I find it difficult to imagine where I'll be 5, 10, 20 plus years from now. Truthfully, I don't want to watch my life slowly deteriorate, while in my mind, I try to keep positive and spunky. I have so many blessings in my life. I have a fabulous husband, an incredible daughter, an amazing family and terrific friends. My heart is so full of the most important things in life, but I'm crumbling personally because I don’t have my health.
I love being Zoe's mom. When she was little there were so many things we could do together – taking her for long walks in her stroller, gardening together, going to the library, the movies, and everywhere that a mother and daughter go. As she grows and her interests change, I find myself too tired to participate and more responsibility is put on Paul's shoulders to give her a great childhood.
I don't want her to grow up thinking her mom rarely participated in the things that were important to her. I don't want her to remember her childhood with me sleeping all the time or "resting". I love when Paul and Zoe go on adventures together, but dang I'd love to be with them. I'd love to DO so many things with my daughter, husband and friends. My health limits all of my life.
Paul and I have had many heartfelt chats and we've discussed how my world has become smaller and smaller due to the MS. It's next to impossible to dream and live fully while fatigue lives in every cell of your body and you drag yourself from room to room. I rarely complain. I always (well mostly) try to put my best foot forward and have a positive attitude. I always say, “Be more than I am.” I think I do a pretty good job of this, but underneath the surface... I'm struggling and often feel a bit hopeless and very sad.
I sincerely believed that there was no other choice. I'd hate to make life more difficult than it already is for my family. And being negative only breed’s negativity, so I try to avoid it. I didn't think there would be a cure or another option for me regarding MS in my lifetime. Since I have secondary-progressive MS, and there are no drugs for this stage, I try to eat a primarily Paleo diet and I try to exercise. I'm not perfect at either one, but I do notice feeling better when I do both. Ha! I believe this can be said for us all!
Finding HOPE:
I was on a Pacific NW MS Facebook site in early December and learned about HSCT (hematopoietic stem cell transplant) from a lady who had the procedure done in Puebla, Mexico 5 months prior. She was sharing how she continues to experience health benefits from her 28-day experience. I called and spoke to Susan for about 40 minutes and then began doing my own research. I’m so optimistic about what I've learned! They've been doing the HSCT procedure for MS in other countries for many years.
The Procedure:
HSCT is a common treatment for hematology (cancers of the blood) but has also been successful in MS cases. The procedure is intense; over a month in the hospital, where my own stem cells will be harvested from my bone marrow (embryonic cells are not used), chemotherapy, followed by a period of isolation. The procedure wipes out the memory of MS in my body and gives my immune system a "fresh start."
This procedure is not FDA approved in the US but has been done for more than 10 years in clinical trials at Northwestern Hospital in Chicago and has shown a 90% success rate. The FDA is currently conducting clinical trials in the US for the relapsing-remitting version of MS, but not yet the secondary-progressive version. However, the secondary-progressive MS treatment has been approved in other countries like Canada, Mexico, Russia, Germany and Israel to name a few.
Price and Benefits of HOPE:
The HSCT procedure is performed in Puebla and Monterrey , Mexico for $54,500. In the many blogs I've read, and from reading the medical journals, the number one thing that HSCT will do for anyone with MS is to STOP THE PROGRESSION, (makes me wish I knew about this procedure 10 years ago before I had any disability.) Many (most) people within a period of 2 years after the HSCT procedure also recover from some of their disability, (like balance or walking without a cane) and much of their fatigue is gone. However, even if I didn’t regain anything I’ve lost, halting any further progression of my disability would make a HUGE difference in my life.
Recovering some of what I've lost would be a miracle! It's hard to keep my hopes in check, although it seems like the prudent thing to do. I keep researching, looking at other people’s blogs and continue to get more and more HOPEFUL and EXCITED! I need to do this! I want to experience the great things everyone else is experiencing! I want a cure (by this I mean halting any further progression of this disease) and it looks like HSCT is just that! $60,000 can’t be the thing that stops me from…dare I say, a new life.
I'm hopeful!! I'm optimistic!! I want a cure... or the closest thing offering genuine benefit out there!! I want to feel better!! I want to dream and plan and look forward to doing things in my life. I don't want to sit on the sidelines and watch my family and friends truly living, while I'm resting or sleeping the remainder of my days.
Deep Gratitude:
We believe that this HSCT procedure is worth it. We need help raising $60,000 so that I can have this procedure in Puebla or Monterrey, Mexico. It's a 28-day procedure and I’ll need to have a caregiver with me 24/7. It's hard to imagine having a stem cell transplant and chemotherapy. I'll lose all my hair (not that I have much to lose – ha ha), but hopefully I’ll regain some of my abilities. At least I won't watch myself deteriorate into a wheelchair or worse. I'm asking you for a lot. I'm asking for help and your hard-earned money too, so I can get the HSCT procedure to stop my disease. There aren't enough words in the universe for the gratitude I’ll feel for anything you can donate to my most heartfelt cause. This will not only change my life for the better, but also the lives of my family and friends, too! Thank you. Sincerely...Thank you. ;0)
Sharing my MS story has always been a very difficult thing. I used to call it “Mashed Potatoes” because I didn’t even want to say the words, “Multiple Sclerosis .” With many of you, I haven’t mentioned MS at all. Up until now, unless you’re a part of my daily life and see me regularly, I would’ve preferred to never mention MS. During the relapsing-remitting stage I was able to conceal it because you couldn’t see the disease. I could easily forget that an arm or leg was numb and live my life positively (and blindly) with the huge MonSter lurking behind my craftily carved wall of, “deniability.” It's still difficult for me to share my story so openly now, but I want to do it. I believe it's the right thing to do under these circumstances. I believe that now there’s HOPE!
I have multiple sclerosis . I had my first episode right after I turned 30. I'm 51 now. I had the relapsing-remitting form of MS for the first 10 years and then it gradually turned into secondary-progressive MS. I have tried the following medicines: Copaxone, Avonex, Tysabri and LDN (low dose naltrexone) to slow the MS, but to no avail. MS is a persistent, relentless and debilitating disease.
Me Today:
With 21 years of cumulative damage, I am now rapidly losing my ability to walk, balance, feel good, enjoy life and sometimes process thoughts. MS usually affects one side of the body. It affects my right side. I have foot drop, severe balance issues, trouble walking, deep fatigue and my right hand is very weak. I use a cane almost always now, including in the house.
We recently bought a Chrysler Town & Country mini van and had it retrofitted with an interior scooter lift, so I could ride my scooter and have more mobility on a daily basis. I can't walk across the street unassisted. I take daily naps of 2-3 hours and sleep approximately 10 hours per night yet I never feel well rested.
Paul (my husband) describes me like I'm a cell phone battery that can’t get a full charge (and I only have about 50% charge to begin with). When I use up that 50%, I need to rest just to do some of the basic daily activities like laundry, cooking, showering, taking care of Zoë (my 10 year-old daughter), being a sound and present wife and running errands. I limit what I do on a daily basis to about one thing per day.
My Future:
I find it difficult to imagine where I'll be 5, 10, 20 plus years from now. Truthfully, I don't want to watch my life slowly deteriorate, while in my mind, I try to keep positive and spunky. I have so many blessings in my life. I have a fabulous husband, an incredible daughter, an amazing family and terrific friends. My heart is so full of the most important things in life, but I'm crumbling personally because I don’t have my health.
I love being Zoe's mom. When she was little there were so many things we could do together – taking her for long walks in her stroller, gardening together, going to the library, the movies, and everywhere that a mother and daughter go. As she grows and her interests change, I find myself too tired to participate and more responsibility is put on Paul's shoulders to give her a great childhood.
I don't want her to grow up thinking her mom rarely participated in the things that were important to her. I don't want her to remember her childhood with me sleeping all the time or "resting". I love when Paul and Zoe go on adventures together, but dang I'd love to be with them. I'd love to DO so many things with my daughter, husband and friends. My health limits all of my life.
Paul and I have had many heartfelt chats and we've discussed how my world has become smaller and smaller due to the MS. It's next to impossible to dream and live fully while fatigue lives in every cell of your body and you drag yourself from room to room. I rarely complain. I always (well mostly) try to put my best foot forward and have a positive attitude. I always say, “Be more than I am.” I think I do a pretty good job of this, but underneath the surface... I'm struggling and often feel a bit hopeless and very sad.
I sincerely believed that there was no other choice. I'd hate to make life more difficult than it already is for my family. And being negative only breed’s negativity, so I try to avoid it. I didn't think there would be a cure or another option for me regarding MS in my lifetime. Since I have secondary-progressive MS, and there are no drugs for this stage, I try to eat a primarily Paleo diet and I try to exercise. I'm not perfect at either one, but I do notice feeling better when I do both. Ha! I believe this can be said for us all!
Finding HOPE:
I was on a Pacific NW MS Facebook site in early December and learned about HSCT (hematopoietic stem cell transplant) from a lady who had the procedure done in Puebla, Mexico 5 months prior. She was sharing how she continues to experience health benefits from her 28-day experience. I called and spoke to Susan for about 40 minutes and then began doing my own research. I’m so optimistic about what I've learned! They've been doing the HSCT procedure for MS in other countries for many years.
The Procedure:
HSCT is a common treatment for hematology (cancers of the blood) but has also been successful in MS cases. The procedure is intense; over a month in the hospital, where my own stem cells will be harvested from my bone marrow (embryonic cells are not used), chemotherapy, followed by a period of isolation. The procedure wipes out the memory of MS in my body and gives my immune system a "fresh start."
This procedure is not FDA approved in the US but has been done for more than 10 years in clinical trials at Northwestern Hospital in Chicago and has shown a 90% success rate. The FDA is currently conducting clinical trials in the US for the relapsing-remitting version of MS, but not yet the secondary-progressive version. However, the secondary-progressive MS treatment has been approved in other countries like Canada, Mexico, Russia, Germany and Israel to name a few.
Price and Benefits of HOPE:
The HSCT procedure is performed in Puebla and Monterrey , Mexico for $54,500. In the many blogs I've read, and from reading the medical journals, the number one thing that HSCT will do for anyone with MS is to STOP THE PROGRESSION, (makes me wish I knew about this procedure 10 years ago before I had any disability.) Many (most) people within a period of 2 years after the HSCT procedure also recover from some of their disability, (like balance or walking without a cane) and much of their fatigue is gone. However, even if I didn’t regain anything I’ve lost, halting any further progression of my disability would make a HUGE difference in my life.
Recovering some of what I've lost would be a miracle! It's hard to keep my hopes in check, although it seems like the prudent thing to do. I keep researching, looking at other people’s blogs and continue to get more and more HOPEFUL and EXCITED! I need to do this! I want to experience the great things everyone else is experiencing! I want a cure (by this I mean halting any further progression of this disease) and it looks like HSCT is just that! $60,000 can’t be the thing that stops me from…dare I say, a new life.
I'm hopeful!! I'm optimistic!! I want a cure... or the closest thing offering genuine benefit out there!! I want to feel better!! I want to dream and plan and look forward to doing things in my life. I don't want to sit on the sidelines and watch my family and friends truly living, while I'm resting or sleeping the remainder of my days.
Deep Gratitude:
We believe that this HSCT procedure is worth it. We need help raising $60,000 so that I can have this procedure in Puebla or Monterrey, Mexico. It's a 28-day procedure and I’ll need to have a caregiver with me 24/7. It's hard to imagine having a stem cell transplant and chemotherapy. I'll lose all my hair (not that I have much to lose – ha ha), but hopefully I’ll regain some of my abilities. At least I won't watch myself deteriorate into a wheelchair or worse. I'm asking you for a lot. I'm asking for help and your hard-earned money too, so I can get the HSCT procedure to stop my disease. There aren't enough words in the universe for the gratitude I’ll feel for anything you can donate to my most heartfelt cause. This will not only change my life for the better, but also the lives of my family and friends, too! Thank you. Sincerely...Thank you. ;0)
Organizer
Debra Stange Weidner
Organizer
Camas, WA
