Ataxia breaks my heart. Reading your posts about living with ataxia more than breaks my heart. Watching my husband and seeing him sit instead of having his former life and straining to hear him when he is unable to speak and has no voice or a slurred voice breaks my heart. I came to this site because I was so new at this and I was sure that people who have dealt with this for a longer time would have some answers, some help. I have spent hours and hours researching this and looking for answers and it seems that for the most part there are no answers---that REALLY breaks my heart. I have a very strong faith in God--I believe that He answers prayers. I believe that He is helping me and leading me and that there are answers. I have some help for any of you that want to connect with me and look at what I have found. My husband is getting better---he will continue to get better. There is hope. Please believe me and step forward in faith, because our heavenly Father loves us and knows we are down here and when He answers prayer it does not come in the mail and is not signed God. I feel such a real and close connection with each one of you. I thank each of you that have welcomed and posted a reply to my first post. Please look at what I have found. With love, Joy
Joy, and all, I was reading just this morning that all we have to do is open up a little space (like the "eye of a needle") and God will do the rest to open a grand doorway. Your passion is so uplifting, and we truly appreciate you!
Hey Joy.. Trust me ... he can talk and understand... I had the same problem.. I didnt forget how to talk.. just had trouble using the muscles that let me do it... only one answer, just fight it like the rest of life would have been without this anyway. I dont know how to put it but... sunny days... I love them, life looks wonderful, I wouldnt know that without the darkest days. During those Dark days I just think of the sunny ones because it will be there just as sure as this day, just keep going. Everyone always wonders why people fight, I think the real reason is because they know they are alive and its worth living, that means havent given up... most have no idea how this is... and Im glad they dont but we are F(&**^&$ Tough. God Bless Joy.. Keep Venting.. Anger just eats people like termites! Im so glad to hear about his Improvement. Just nerdy wisdom but i always hang a punching bag where ever I am... its weird I know but not really.. that bag knows me better than my dog... im not a training fighter.. Im just giving it.. who cares that I look funny or what others percieve.. I just let it out... vent, maybe just me though, I take lots of things doctors would never give but do help like no other that make me fight the hell out of this... probably why I feel great but then again what can you do about paralysis except everything you can to take the pain and work through it, hurts worse the other way.
HI JOY! I AM SO GLAD YOUR HUSBAND IS BETTER! I WOULD BE MOST INTERESTED IN WHAT YOU HAVE FOUND!!
I ALSO HAVE SPENT COUNTLESS HOURS LOOKING FOR THAT ANSWER.......YES ..GOD IS IN THE PLAN......HE HAS A PLAN FOR US ALL. I BELEIVE THAT WITH ALL MY HEART! FAITH IS WONDERFUL!!!!
I DO TRY AND MAKE EVERYDAY GOOD AND PRODUCTIVE...BUT THE LONLINESS CREEPS BACK IN!!!!!!!!!
SOMETIMES I KNOW AS GODS WORD TEACHES US THAT AS LONG AS WE ARE IN FLESH BODIES....THERE WILL BE SICKNESS....AND THINGS DO HAPPEN! I STILL TRUST THE LORD NO MATTER WHAT!
PLEASE ....LET US KNOW WHAT YOU HAVE FOUND.... AND MAY YOU HAVE A BLESSED DAY AND WEEK!!!!
KEEP ON VENTING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hello Produce Lady--I read your story. Produce--does that mean you eat healthy- lots of veggies? Also, you treat yourself-no meds. I have found (answer to prayer--total stranger) out about an all natural pill that is not a vitamin or mineral or antioxidant (tho it turns on the body's own antioxidant production exponentially) that was all over the news in 2005--ABC, NBC, PBS, Wall Street Journal- because it unlocks the key to almost all diseases--cellular damage. This pill (FDA approved statement) is clinically proven to reduce cellular damage by at least 40% in 30 days in 100% of people and animals. That caused over 25 medical universities to fund their own studies on it, including Harvard, American Heart Association, Natl Inst of Health, and over 20 others. More studies have shown that this is a new category--a medical breakthrough -a Nrf2 activator (which means it is a gene regulator) It upregulates over 3000 good genes and downregulates the bad genes that cause pain, inflammation, fibrosis (scar tissue). It does not interfere with any scrips. It increases the body's own natural glutathione by 300% which is HUGE for movement disorders. This has made a HUGE difference for my husband (answer to prayer) but he is still on anti-seizure meds which cause ataxia--we are hoping to get off or reduce the meds. Go to googlescholar (not google) or pubmed.gov to do your own research on glutathione,Nrf2, oxidative stress (cellular damage). This is cutting-edge research. WHY doesn't everyone know about this??? Because it is not a pharmaceutical --all natural. I am trying to get the word out (was in vitamin stores from 2005-2009 and just sat there). Only about 1% of the US Population knows about it and now you--you can see the ABC clip at abcliveit.com and contact me with questions or if you want to order at wholesale ($40 month + tax) This is REAL and TRUE. Hope!! Joy
It sounds like we are living the same life right now except I am dealing with my 21 month old son's ataxia. I also am trusting in Heavenly Father and it is amazing how He has guided me through this trial and brought me peace and understanding when I have needed it. This has been a HUGE eye opener for me. Before my son's symptoms started I knew absolutely nothing about ataxia. Finding this group has blessed me in so any ways. Seeing those suffering with ataxia, but yet they are still remaining hopeful and strong gives me so much hope for my son.
I found a woman who lives not far from me who has 3 children with Ataxia telangiectasia. They are twins who are 9 and a 2 year old. The twins should be wheelchair bound by this point, but one is still riding a bike!!! She has been giving them double doses of protandim for 3 years and has been blown away by the results. I'm starting my son on it.
Thanks for your uplifting post!
My husband has been fighting this for 8 yrs now. I feel that a part of me has died daily with him. I think I have been thru every phase of this with him he is now in the angry phase and nothing I do is right I write a gratitude list everyday. I would like to connect with you off line if at all possible
HEY JOY!
YES..I DO LOVE PRODUCE..AND FRESH VEGETABLES!!!! YES I TAKE OF ME!!! DON'T LIKE MEDICINE OR OTC TREAMENTS......THEY A L L SCARE ME! YES, PROTANDIM HAS BEEN OUT A LONG TIME!!!!!!!!!!!!!!!!!!!!
NEVER TRIED IT!!!! I WOULD LIKE TOO!!! LET ME GET IN TOUCH YOU AND HOOK UP ON PROTANDIM!!!
GOT NOTHING TO LOOSE!!!!!! GET IN TOUCH A.S.A.P.
THANKS AGAIN!!!
I USE TO WORK MY LOCAL GROCERY IN PRODUCE SECTION-LOVED IT!! HATED TO GIVE IT UP!!!
I am aChristian with Ataxia too.I think God sometimes talks to me through my thinking.I have not heard His voice telling me I will be cured but some are but not through their own gooodness but it may be God's will.Whatever He asks us to do it may be that we are special and that is our particular race but it is not for us to understand everything.
It is a very hard race to run.But don't be discouraged about your husband.
All the Christian couples I know with a movement disorder are very happy and content.
Look at and read about Jennifer Rees Larcombe.She' s very inspiring.Her story certainly helped me.
I believe our journey with God is unique as He knows each of us so well, better than we even do.
I believe that God can heal people and does. I don't believe that healing is His plan for everyone. (All of us eventually die.) Since I can't begin to have His vantage point, I can't assume to know what His plan is for anyone (including me). I've asked God for healing. At this point the answer is wait. I know I will be fully healed when I get to heaven. :-)
We (my husband and I) are both gluten free and vegan. It's been tremendously healing. Gluten ataxia is my thing. It's been nothing short of a miracle to find this answer. We also follow Dr Joel Fuhrman's "Eat to Live" plan. It's eating foods that are nutritionally dense. Foods God gave us.
I'm grateful for everyday I have where I can get around without a cane/walker/wheelchair. I live each day as He gives it to me. God has used my Ataxia to bless others and bring Him glory. I'm grateful for that. That's all I can ask in the end. Have I glorified God today? Jesus Christ is my Lord and Savior.
Philippians 4:12
"I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want."
Hear hear Julie especially the first bit.
Dear Joy, So glad your husband is doing better! I do believe ALL things happen for a reason (good as well as bad). Faith helps me get through also!
I'm interested in trying the natural supplement. I'm confused though, after reading the posts. What is the name and how/where does one buy it? Thank you...;o)
Thanks so much for the information Joy! ;o)
Dear Julie, I know from your earlier post that you are a woman of great faith, as am I. I also heard in your earlier post what sounded like your thoughts are that you believe that you have found out that your answer is gluten, which I'm sure it is and that you have verified that. I want to share with you as someone who was bedridden for about 5 years myself 20 years ago that what I learned 20 years ago in my case was that regaining my health was like putting together a jigsaw puzzle--meaning that there was more than one answer, more than one piece. Back then, I like most patients, was looking for THE answer THE cure to get me out of bed. In my husband's case, once again, we are like detectives trying to find ALL the clues to put together his puzzle (everyone is unique). So far, we know he 1) has a traumatic brain injury 2) anti-seizure meds for 40 years 3) food intolerances 4) nutritional deficiencies from the meds. Like you, we are changing diet --and also changing meds and also have tried HBOT and also now doing EEG neurofeedback, and also taking supplements including the one that regulates the body's own God-given genes that reduces inflammation, increases glutathione 300%, reduces cellular damage 40-70% in 30 days. I came to this site for information and support. We all know that doctors do not have the answers for us, so we must help each other and share information. This supplement that is helping so many people sat on the shelves of stores from 2005 to 2009 because it was so different that no one understood it. Once I saw it make life-changing differences in my neighbor and my friend, I looked up and said "OK God, I get it--you are telling me to do this." It is not my intent to in any way to take advantage of anyone who is suffering and as the site says "living with ataxia". I apologize to you and to anyone and everyone else if I have done something wrong in this wonderful site. My only hope and intent is to help. One last point--if I know something that has helped my husband and others, should I not mention it because it is no longer in the stores? Somehow, that seems wrong. You can take the information or leave it --it is just information given because my heart aches for every one who is "living with ataxia" With love, Joy
I think the thing that makes your effort come off wrong is that you wouldn't tell people what it was. You just say I have found something that can help you but contact ME. That makes it look like YOU are trying to make money off of them and you don't want them to buy it through someone else. Honestly, that kind of bothered me also. I knew what you were talking about so I knew it was protandim. I think it wouldn't look like you were trying to take advantage if you would have just said what it was from the beginning. I know that your intent is good but I can see why it might rub people wrong. I believe in Protandim and I think it can help people so I hope that you approach it different in the future because now some people might not even try it because it looks like a money making effort.
Joy said:
Dear Julie, I know from your earlier post that you are a woman of great faith, as am I. I also heard in your earlier post what sounded like your thoughts are that you believe that you have found out that your answer is gluten, which I'm sure it is and that you have verified that. I want to share with you as someone who was bedridden for about 5 years myself 20 years ago that what I learned 20 years ago in my case was that regaining my health was like putting together a jigsaw puzzle--meaning that there was more than one answer, more than one piece. Back then, I like most patients, was looking for THE answer THE cure to get me out of bed. In my husband's case, once again, we are like detectives trying to find ALL the clues to put together his puzzle (everyone is unique). So far, we know he 1) has a traumatic brain injury 2) anti-seizure meds for 40 years 3) food intolerances 4) nutritional deficiencies from the meds. Like you, we are changing diet --and also changing meds and also have tried HBOT and also now doing EEG neurofeedback, and also taking supplements including the one that regulates the body's own God-given genes that reduces inflammation, increases glutathione 300%, reduces cellular damage 40-70% in 30 days. I came to this site for information and support. We all know that doctors do not have the answers for us, so we must help each other and share information. This supplement that is helping so many people sat on the shelves of stores from 2005 to 2009 because it was so different that no one understood it. Once I saw it make life-changing differences in my neighbor and my friend, I looked up and said "OK God, I get it--you are telling me to do this." It is not my intent to in any way to take advantage of anyone who is suffering and as the site says "living with ataxia". I apologize to you and to anyone and everyone else if I have done something wrong in this wonderful site. My only hope and intent is to help. One last point--if I know something that has helped my husband and others, should I not mention it because it is no longer in the stores? Somehow, that seems wrong. You can take the information or leave it --it is just information given because my heart aches for every one who is "living with ataxia" With love, Joy
Hi Jabooshi, I thank you for your post. Realizing that this was a site for support and help and not wanting to "do business" or "sell" on a support site, yet wanting to share the information (offline so as not to offend or break any rules), I did not mention the name of the product. Another reason is that the average person goes to google and up comes the professional "everything is a scam" bloggers that sling mud and the average person says "I knew it was too good to be true" not knowing that Harvard, American Heart Association, etc, etc, have validated it. Believing they have "researched" it, they pass it up. Another problem is Amazon sites that sometimes have the real product and sometimes have the fake product. It is ironic that in trying not to offend, I did so big time. Another reason I asked that people contact me directly is to answer questions, direct to websites that are specific to their needs (as I have studied and researched this for about 2 years) and basically, just be of service and support. When one gets the first bottle, on the label it says take one a day with food--no literature--because they should have someone to answer them in person. I told you that the person near you in Idaho would be able to help you and you would be in good hands because she has personal experience--I did not urge you to order from me, because you had someone with children (like you) who could really help. I also mentioned that one should use googlescholar or www.pubmed.gov to research as anyone can put anything on the 'net and we must use validated search sites. The other thing I messed up with was not understanding that there was a way to send private messages (which was my intent when I responded to some questions.) Once again, thank you for your input. This is something that is helping people and more people need to learn more about it, so I appreciate you taking your time to post. Keeping you and yours in prayer, Joy
Jabooshi said:
I think the thing that makes your effort come off wrong is that you wouldn't tell people what it was. You just say I have found something that can help you but contact ME. That makes it look like YOU are trying to make money off of them and you don't want them to buy it through someone else. Honestly, that kind of bothered me also. I knew what you were talking about so I knew it was protandim. I think it wouldn't look like you were trying to take advantage if you would have just said what it was from the beginning. I know that your intent is good but I can see why it might rub people wrong. I believe in Protandim and I think it can help people so I hope that you approach it different in the future because now some people might not even try it because it looks like a money making effort.
Joy said:Dear Julie, I know from your earlier post that you are a woman of great faith, as am I. I also heard in your earlier post what sounded like your thoughts are that you believe that you have found out that your answer is gluten, which I'm sure it is and that you have verified that. I want to share with you as someone who was bedridden for about 5 years myself 20 years ago that what I learned 20 years ago in my case was that regaining my health was like putting together a jigsaw puzzle--meaning that there was more than one answer, more than one piece. Back then, I like most patients, was looking for THE answer THE cure to get me out of bed. In my husband's case, once again, we are like detectives trying to find ALL the clues to put together his puzzle (everyone is unique). So far, we know he 1) has a traumatic brain injury 2) anti-seizure meds for 40 years 3) food intolerances 4) nutritional deficiencies from the meds. Like you, we are changing diet --and also changing meds and also have tried HBOT and also now doing EEG neurofeedback, and also taking supplements including the one that regulates the body's own God-given genes that reduces inflammation, increases glutathione 300%, reduces cellular damage 40-70% in 30 days. I came to this site for information and support. We all know that doctors do not have the answers for us, so we must help each other and share information. This supplement that is helping so many people sat on the shelves of stores from 2005 to 2009 because it was so different that no one understood it. Once I saw it make life-changing differences in my neighbor and my friend, I looked up and said "OK God, I get it--you are telling me to do this." It is not my intent to in any way to take advantage of anyone who is suffering and as the site says "living with ataxia". I apologize to you and to anyone and everyone else if I have done something wrong in this wonderful site. My only hope and intent is to help. One last point--if I know something that has helped my husband and others, should I not mention it because it is no longer in the stores? Somehow, that seems wrong. You can take the information or leave it --it is just information given because my heart aches for every one who is "living with ataxia" With love, Joy
That makes sense as to why you didn't share the name. I'm hoping and praying that it will do everything for my son as it has for your husband and my friend's children.
Joy said:
Hi Jabooshi, I thank you for your post. Realizing that this was a site for support and help and not wanting to "do business" or "sell" on a support site, yet wanting to share the information (offline so as not to offend or break any rules), I did not mention the name of the product. Another reason is that the average person goes to google and up comes the professional "everything is a scam" bloggers that sling mud and the average person says "I knew it was too good to be true" not knowing that Harvard, American Heart Association, etc, etc, have validated it. Believing they have "researched" it, they pass it up. Another problem is Amazon sites that sometimes have the real product and sometimes have the fake product. It is ironic that in trying not to offend, I did so big time. Another reason I asked that people contact me directly is to answer questions, direct to websites that are specific to their needs (as I have studied and researched this for about 2 years) and basically, just be of service and support. When one gets the first bottle, on the label it says take one a day with food--no literature--because they should have someone to answer them in person. I told you that the person near you in Idaho would be able to help you and you would be in good hands because she has personal experience--I did not urge you to order from me, because you had someone with children (like you) who could really help. I also mentioned that one should use googlescholar or www.pubmed.gov to research as anyone can put anything on the 'net and we must use validated search sites. The other thing I messed up with was not understanding that there was a way to send private messages (which was my intent when I responded to some questions.) Once again, thank you for your input. This is something that is helping people and more people need to learn more about it, so I appreciate you taking your time to post. Keeping you and yours in prayer, Joy
Jabooshi said:I think the thing that makes your effort come off wrong is that you wouldn't tell people what it was. You just say I have found something that can help you but contact ME. That makes it look like YOU are trying to make money off of them and you don't want them to buy it through someone else. Honestly, that kind of bothered me also. I knew what you were talking about so I knew it was protandim. I think it wouldn't look like you were trying to take advantage if you would have just said what it was from the beginning. I know that your intent is good but I can see why it might rub people wrong. I believe in Protandim and I think it can help people so I hope that you approach it different in the future because now some people might not even try it because it looks like a money making effort.
Joy said:Dear Julie, I know from your earlier post that you are a woman of great faith, as am I. I also heard in your earlier post what sounded like your thoughts are that you believe that you have found out that your answer is gluten, which I'm sure it is and that you have verified that. I want to share with you as someone who was bedridden for about 5 years myself 20 years ago that what I learned 20 years ago in my case was that regaining my health was like putting together a jigsaw puzzle--meaning that there was more than one answer, more than one piece. Back then, I like most patients, was looking for THE answer THE cure to get me out of bed. In my husband's case, once again, we are like detectives trying to find ALL the clues to put together his puzzle (everyone is unique). So far, we know he 1) has a traumatic brain injury 2) anti-seizure meds for 40 years 3) food intolerances 4) nutritional deficiencies from the meds. Like you, we are changing diet --and also changing meds and also have tried HBOT and also now doing EEG neurofeedback, and also taking supplements including the one that regulates the body's own God-given genes that reduces inflammation, increases glutathione 300%, reduces cellular damage 40-70% in 30 days. I came to this site for information and support. We all know that doctors do not have the answers for us, so we must help each other and share information. This supplement that is helping so many people sat on the shelves of stores from 2005 to 2009 because it was so different that no one understood it. Once I saw it make life-changing differences in my neighbor and my friend, I looked up and said "OK God, I get it--you are telling me to do this." It is not my intent to in any way to take advantage of anyone who is suffering and as the site says "living with ataxia". I apologize to you and to anyone and everyone else if I have done something wrong in this wonderful site. My only hope and intent is to help. One last point--if I know something that has helped my husband and others, should I not mention it because it is no longer in the stores? Somehow, that seems wrong. You can take the information or leave it --it is just information given because my heart aches for every one who is "living with ataxia" With love, Joy