Here is an 11-minute clip of an interview that I did with Trent Lindstrom on 21 Jan 2012. This is a good summary of my family's struggles with Huntington's Disease and Ataxia Telangiectasia and how Protandim has given us hope.
For more information about Protandim and LifeVantage, visit: www.mylifevantage.com/jillshope
Saturday, January 21, 2012
Monday, January 16, 2012
Mom Eats By Herself
My sister reported today that she took Mom to a doctor's appointment. After bringing her back to the care center, she stayed to feed Mom lunch. She reported that she went to feed her and mom grabbed the fork out of her hand and insisted on feeding herself. This is the first time we have seen our mom feed herself in a very long time.
One of the aides commented that she is started to do all kinds of things that she was not doing before such as going into the bathroom by herself to use the bathroom (she was not successful, however, because she only has the use of her right hand right now) AND she unbuckled her own seat belt on her wheelchair, stood up and walked out of the dining room because she was tired of waiting for the aide to get back.
One of the aides commented that she is started to do all kinds of things that she was not doing before such as going into the bathroom by herself to use the bathroom (she was not successful, however, because she only has the use of her right hand right now) AND she unbuckled her own seat belt on her wheelchair, stood up and walked out of the dining room because she was tired of waiting for the aide to get back.
These are pretty amazing feats for someone who has been diagnosed with stage IV Huntington's disease!
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Thursday, January 12, 2012
"So Beautiful"--Mom's First Words
Today I got a surprise phone call from my sister who had traveled over 500 miles to see my mom on the spur of the moment. She had been hearing from my other sister how well my mom was doing since we started her on 1 Protandim in the morning and 1 Protandim at night about 2 months ago and she wanted to see it for herself.
My mom had been diagnosed with stage IV Huntington's disease well over a year ago and was not expected to make it much longer. Her own mother died around the age of 55 from Huntington's Disease related symptoms and my mom is now 58. She has also not spoken or walked in well over a year.
My sister called me because she was so excited! Because when she got there, my mom got up and was dancing with her and then she insisted on going outside for a walk. When she got outside, Cindy reported that she said, "So beautiful!" These were the first words that my sister had heard her speak in well over a year and she was so excited.
These are very exciting reports to hear about my mother, who searched her whole life for answers to her many health problems, but especially Huntington's disease. She always believed that she would find answers in her life time and it is such a miracle to watch all of this happen.
It is also a very exciting and emotional time for us as siblings as our whole lives we have always had the horrible death sentence of Huntington's hanging over our heads. And, for the very first time ever we have REAL HOPE! This feels my heart with so much joy that it is hard to put into words.
My mom had been diagnosed with stage IV Huntington's disease well over a year ago and was not expected to make it much longer. Her own mother died around the age of 55 from Huntington's Disease related symptoms and my mom is now 58. She has also not spoken or walked in well over a year.
My sister called me because she was so excited! Because when she got there, my mom got up and was dancing with her and then she insisted on going outside for a walk. When she got outside, Cindy reported that she said, "So beautiful!" These were the first words that my sister had heard her speak in well over a year and she was so excited.
These are very exciting reports to hear about my mother, who searched her whole life for answers to her many health problems, but especially Huntington's disease. She always believed that she would find answers in her life time and it is such a miracle to watch all of this happen.
It is also a very exciting and emotional time for us as siblings as our whole lives we have always had the horrible death sentence of Huntington's hanging over our heads. And, for the very first time ever we have REAL HOPE! This feels my heart with so much joy that it is hard to put into words.
Wednesday, January 11, 2012
Rachel's Failure to Thrive
The most pressing issue that has been on my mind this morning is Rachel's "failure to thrive". I can usually get 3+ bottles of goats milk with a packet of carnation instant breakfast--to help with her calorie intake(we switched to goats milk because we suspect that pasteurized cow's milk was causing her to be congested all of the time) and whatever little bits of food that we can convince her to eat. Her lack of desire for food is very strange.
I have taken her to a local doctor and her pediatrician in Pocatello just to see if there is something I am missing as to why she refuses to eat--ear infection, blocked throat, infected throat???? We are all at a loss as to why this is happening.
The older she gets I am even more convinced we are seeing ataxia-telangiectasia (A-T) symptoms just like her brother and twin sister. She is not growing right, she continues to be wobbly in her gait, and she tires very easily. Her preliminary alphafeta-protein (afp) blood test (afp levels in A-T children are higher than normal) has come back high, which is not looking good in her favor, but it does not mean as much until she is over two. She has not had the confirmatory A-T testing done yet. At this point I would be very surprised if she doesn't have A-T, but boy would I be thrilled!!!
One thing that I would like to get more information about is exactly what a feeding tube is and how it works. How much does it cost? What does it entail? Can the whole in their stomach close back up if it is no longer needed? Can we put any liquid foods in it or does it have to be pre-packaged ones? I would love to put healthy meals together in my Vita-Mix and get them into her body. Would a feeding tube give me the opportunity to get vitamins and pills down her that she refuses to take? I really need to be getting protandim down her consistently because I know that it will help alleviate her A-T symptoms. I have watched what protandim has done for my A-T twins and I will do anything I have to do to get it down her because she needs the help. Currently we are giving her half in a bottle in the morning and half in a bottle at night. I am not sure that she is always getting it, however, because some of it ends up in the nipple or stuck in the bottom of the bottle and sometimes she just flat out refuses to drink her bottle.
I, like most people, have always been somewhat leary of the idea of a feeding tube, but if it is what will work I think it is worth looking into. When Rebekah was born she was in the hospital for an extra 9 days because she refused to eat. They had a tube going down into her stomach to get food down her and it worked. Eventually we were able to get her to eat and she stayed healthy through the process. The main difference that I see between the tube down her throat and the tube in her tummy is the surgery part of it, but they both accomplish the same purpose. We are committed to doing whatever it takes to help our children be and stay healthy.
I think this is an issue that deserves a lot more thought, research, and prayer. The one person that I need to visit with is my Aunt Tina because she had a son that came home from the hospital on a feeding tube. She will be one that I will be able to gain some valuable insight from.
I have taken her to a local doctor and her pediatrician in Pocatello just to see if there is something I am missing as to why she refuses to eat--ear infection, blocked throat, infected throat???? We are all at a loss as to why this is happening.
The older she gets I am even more convinced we are seeing ataxia-telangiectasia (A-T) symptoms just like her brother and twin sister. She is not growing right, she continues to be wobbly in her gait, and she tires very easily. Her preliminary alphafeta-protein (afp) blood test (afp levels in A-T children are higher than normal) has come back high, which is not looking good in her favor, but it does not mean as much until she is over two. She has not had the confirmatory A-T testing done yet. At this point I would be very surprised if she doesn't have A-T, but boy would I be thrilled!!!
One thing that I would like to get more information about is exactly what a feeding tube is and how it works. How much does it cost? What does it entail? Can the whole in their stomach close back up if it is no longer needed? Can we put any liquid foods in it or does it have to be pre-packaged ones? I would love to put healthy meals together in my Vita-Mix and get them into her body. Would a feeding tube give me the opportunity to get vitamins and pills down her that she refuses to take? I really need to be getting protandim down her consistently because I know that it will help alleviate her A-T symptoms. I have watched what protandim has done for my A-T twins and I will do anything I have to do to get it down her because she needs the help. Currently we are giving her half in a bottle in the morning and half in a bottle at night. I am not sure that she is always getting it, however, because some of it ends up in the nipple or stuck in the bottom of the bottle and sometimes she just flat out refuses to drink her bottle.
I, like most people, have always been somewhat leary of the idea of a feeding tube, but if it is what will work I think it is worth looking into. When Rebekah was born she was in the hospital for an extra 9 days because she refused to eat. They had a tube going down into her stomach to get food down her and it worked. Eventually we were able to get her to eat and she stayed healthy through the process. The main difference that I see between the tube down her throat and the tube in her tummy is the surgery part of it, but they both accomplish the same purpose. We are committed to doing whatever it takes to help our children be and stay healthy.
I think this is an issue that deserves a lot more thought, research, and prayer. The one person that I need to visit with is my Aunt Tina because she had a son that came home from the hospital on a feeding tube. She will be one that I will be able to gain some valuable insight from.
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