Hey Friends! So this is actually last weeks update that I filmed, but then the footage was lost. So last week I just posted Tony’s message by itself. But thankfully I was able to recover the footage and add on his message like I originally planned.🎉 I don’t think I will delete his stand alone message though, because you all left such wonderful comments for him. Those comments made him so happy! Thank you all for being here and helping us through this journey. We love you! ❤️❤️
When my mother-in-law was living with Alzheimers, we joined a caregiver support group. We were really struck by when another participant talked about how things changed when his wife went to residential care. He and his kids got their original relationship with their wife/mother back, since they were no longer in charge of her care. It was a very positive thing.
Thanks for the update! Your surrendered heart is a beautiful thing to witness. The "peace that passes all understanding is guarding your heart and mind" and I'm so happy that you are choosing yourself in the mix. I'm continuing to pray for you all and hope that answers and healing will come speedily.
I’ve been where you are now. You have to except the illness and I think that helps shield your heart. My husband passed away in March, and my heart still wasn’t ready. The grief is still there
Jenny: thank you for sharing. I’m amazed by your strength! Praying for the medical team to figure out what is going. Also praying for your family as you all navigate through this tough time! It sounds that you have a great support system! ❤❤
Jenny I am thrilled to see your smile and to see that you are choosing yourself too. I cannot imagine how hard it is to relinquish control, but bravo!!! Continued prayers for you and Tony.
You are amazing! God bless you and Tony and the kiddos. My husband and I had a weird rough day of bickering. Then I started watching the last 4 videos and it made me feel so ashamed and small. I see what others are going through like you and Tony and it puts things in perspective. Lord please bless and heal this beautiful family. I will continue to pray for you all.🙏🏻❤️
Have they thought about putting Tony on a bi pap at night to help with his breathing? It would inflate his lungs and help with the pneumonia. My daughter uses one that covers her mouth also ,her mouth falls open when she is sleeping. It is called a Trilogy and is on a high setting because only half her diaphragm works. She uses it only when napping or sleeping. Do ask about the autonomic dysreflexia.
I have autonomic neuropathy myself so it is definitely something to explore. Tomorrow, I am meeting with a new neuromuscular doctor to explore my own progressive neurological symptoms. Prayers 🙏🏻 for you'll. ❤
This video is excellent. Glad you added God in there. He is our support, strength, and comfort. Went through a journey with my Mom. Wish I had a video like this at the time. Could have used that “permission” to take care of myself and others. Although I have to say many did tell me to take do that, but hearing the way you said it was more in depth. Very nice ❤
Just saw your channel last night . I went back to the beginning to learn more about you . I can’t tell you how 😥sad I felt seeing how Tony’s health has declined ! You will be in my prayers! 🙏🙏🙏
It almost sounds like a type of dysautonomia that is occurring. Also I wonder whether there is an autoimmune component as well. You are doing so well in your journey. Does the unit he is on provide counselling services for you? Self care is so very important.
I am so happy that you have found a way for self care. You must already know that you are a very strong woman and Tony and you deserve the best ❤It gave me such a relieve that I could hear him talk 🥰 My prayers are with you and your difficult journey 😘😘🙏🙏🙏
Hey Tony.. It is so good seeing and hearing from you. Keep up the hard work and keep us posted! Jenny... You do look and seem so much better. I think your "parking spot" is perfect. Keep returning to the same spot (mentally and physically)❤
Hi! I'm new here so I have some catching up to do. It sounds like Tony might be dealing with an issue with his autonomic nervous system. Praying they get to the bottom of it and he starts feeling better soon :)
Hi, Tony journey. I deal with MS and it's hard going to the cycle not moving very much and everything. So our Persian wishes are with you and Tony and your kids and stuff to me and have a bus to do anything secure. John will cox 😊😊
Praying for both of u I love u guys dearly. Jenny please pray for my brother Marty he is in his final stages of cancer his cancer has spread through out his body they said he could go almost any time l it's sad to watch ur loved one die they are suffering but I know where he s going I know beyond a shadow of a doubt that I will see him again soon please pray that the Lord will give me extra strength to carry on if he makes it till Halloween it will be a miracle I will keep u updated on his condition love u
Dear Jenny, I wonder if Tony has Lyme disease... I have read that it is very hard to diagnose. May God b,ess you both and carry you through this very difficult journey. Please know you are both loved and many people are praying for you and Tony 🙏🙏🙏❤❤❤
I’m so glad he didn’t get the vaccine so that’s not something you have to worry about. Continued prayers for ALL of you! 🙏🏻🙏🏻🙏🏻🙏🏻. Keep taking care of you so you can take care of yours❤️
Im on perm disability. I have severe osteoarthritis, and rods and pins in my neck c3 to c6. I tried working thru it for financial reasons but it became apparent after a car accident that i could no longer bend my neck to type on the PC or answer a phone (i was a soial worker) i had to quit. I am now 60 and its been very difficult. I feel for you and your family and i pray you get this all figured out. Remain faithful. God has a plan and is always there for us. ❤❤❤❤
We need to lift this family up in prayers. My mother had to go in a nursing home and i went everyday , twice a day for over two years. I had to cut back to once a day because of the mental strain. A many of days I had to ask God to give me the strength, and he did.
Dear Jenny and Tony, Two roads diverged in a yellow wood And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth; And then took the other, as just as fair, And having perhaps the better claim, I’ve thought long and hard about how I wanted to give this to you and this afternoon while idling scrolling I came across what I had been looking for. Though I didn’t realize it until I saw this video on TH-cam. I did briefly consider Gandalf speaking to Bilbo about the road outside his front door, being a LOR fan who read these books to my daughters at bedtime. But Robert Frost was the better choice and wiser decision. We, all of us are on a journey called LIFE. How many times have we come upon ‘two roads that diverge’, daily just by habit I’ll bet. I thought I’d share a couple brief path that I’ve traveled. I want to add that sometimes circumstances will make that choice for us. This first path is one of those. I grew up in a small Maryland suburb right next to the District line, Wash.,D.C., in a neighborhood that could have been painted by Norman Rockwell for Look Magazine. Every summer we’d go to Wisconsin to visit cousins and spend a week with my grandparents. The highlight of that week was the picnic fishing trip with Grandpa. The day began as any sunny day in northern Wisconsin, blue sky and puffy white clouds. Grandpa was getting ready to light a campfire to scorch hotdogs and marshmallows. We were about 30 feet away from Twin Bear Lake, Grandma standing behind Grandpa. Mom, Dad, and my kid sister were standing across from my grandparents with the wood between them, I was about 10’ away with the fire between the lake and me. Grandpa thought he had the fire going, but the wood wasn’t the best, so he squirted some more lighter fluid and was going to try to relight the fire. Nobody saw the small blue alcohol flame still burning and when the fluid hit it the fire raced up and into the can. Then several things happened at once, the fluid exploded out of the lid of the can, a strong gust of wind blew off the lake and a big ball of fire hit me. Mom screamed Billy’s on fire! My dad tried to beat out the flames, I was trying to get to a water pump a few feet away. When my dad couldn’t get the flames out he picked me up and was going to throw me in the lake! Then just as he picked me up another gust of wind came off the lake and blew the fire out! It was the a mad race to the hospital in Ashland where I’d spend the next two months before traveling back to Wash. D.C. and a few more weeks in Children’s Hospital for my next two operations. I’d had two in Ashland and would have two more before starting 8th grade. When my dad and sister met mom and I in Milwaukee on my transition to Children’s Hospital, he came up hugged me and said I could have anything that I wanted. Mom had said numerous times that she wished we’d all go to church as a family, so that’s what I asked for, for him(dad) to go to church. I didn’t choose this path but I was traveling on it. Less than ten years later he died from multiple myeloma. I had an aunt come up and told me that until it became too difficult for him to go almost anywhere, he never missed a Sunday. I’d like to think that I helped save him with my simple request. I could have chosen anything but I knew this was important to Mom. Anyway I got a kitten from one of my roommates in Ashland whose cat had a litter. My path has taken me to the group of cities the border the Mississippi River between Illinois and Iowa, with a path that first took me through northern Wisconsin, fatherhood, a divorce, meeting my wife of 37 years in my church, where she just happened to be visiting looking for a congregation to join. This is where I belong. I cannot feel it, that our paths crossed when we unknowingly were looking for a partner. Her path has been different from mine in that she has mainly remained in the general vicinity she grew up in. I can’t explain it but I was meant to be here and we were meant to be together. On her path an incident happened and quite literally a matter of a few seconds. Had that not occurred both our lives would be different as our paths would also have been. On TH-cam site Detroit Local 4. |WDIV, is the story of Cecelia Cichan, the lone survivor of Flight 255 crash just after takeoff from the Detroit airport. That settled my mind to write this to your family. We’re on a path and that path is the journey of life. Sometimes we make the choice while other times they’re made for us. Life is a journey and not a destination, full of challenges and opportunities and adventures. As “psyched for life” told you in a post hospice has evolved to help a family by talking care of their loved one thus easing the burden and people do come out of hospice. While a person’s life will change their journey continues beyond their time on this small blue orb as it travels across space. Two roads diverge in a wood, and I--- Took the one less traveled by, And that has made all the difference.
How did they label it a “zebra case” when he had been diagnosed much earlier with FSHD? I have a friend with FSHD and these are SO the symptoms she has talked about could/will happen as the disease progresses.
Hey Sweet Jenny, So glad you're doing some better yourself. You do have to take care of yourself in order to take care of everyone else. Great to see Tony. Still praying & watching old videos. Your NE IN Friend. 😊
Endocrinology testing can be helpful too. Obviously his body is deficient in key elements and minerals. There is also different tests that can be ran to see how his body is processing vitamins and nutrients. B5 (Pantethine), B6, Ashwagandha, Iron, Beta Glucan, Probiotics can all help strengthen his body. Magnesium, D3 along with K2 for absorption is also very important. Most of these are NOT going to be picked up on any regular test.
I wonder if Tony has had the covid vaxes because many people have suffered adverse effects that doctors are having difficulty diagnosing. Hopefully this helps.
why do you shoot videos in the car? if you and your kids ever need a place to live you can live in my house in california. I live in Joshua tree ca. a 2008 home. 3 bed 2 bath. 2 car garage on 1 acer. the high desert. I could use some company. I go to college in the day. copper mountain college. 57 years old. attend mormon church every Sunday in yucca valley ca.
Hey Friends! So this is actually last weeks update that I filmed, but then the footage was lost. So last week I just posted Tony’s message by itself. But thankfully I was able to recover the footage and add on his message like I originally planned.🎉 I don’t think I will delete his stand alone message though, because you all left such wonderful comments for him. Those comments made him so happy! Thank you all for being here and helping us through this journey. We love you! ❤️❤️
Please tell me how yall are??? I have fshd md too. I think of yall often. Prayers going up always for your family
When my mother-in-law was living with Alzheimers, we joined a caregiver support group. We were really struck by when another participant talked about how things changed when his wife went to residential care. He and his kids got their original relationship with their wife/mother back, since they were no longer in charge of her care. It was a very positive thing.
I am so glad you are taking time for self care Jenny. Big hugs to you, Tony and the family. Praying for results to help Tony and his recovery! 🙏🏻❤️
Thank you so much Christie!! ❤️
Thanks for the update! Your surrendered heart is a beautiful thing to witness. The "peace that passes all understanding is guarding your heart and mind" and I'm so happy that you are choosing yourself in the mix. I'm continuing to pray for you all and hope that answers and healing will come speedily.
Thank you so much Amy! We appreciate it!
I’ve been where you are now. You have to except the illness and I think that helps shield your heart. My husband passed away in March, and my heart still wasn’t ready. The grief is still there
Jenny: thank you for sharing. I’m amazed by your strength! Praying for the medical team to figure out what is going. Also praying for your family as you all navigate through this tough time! It sounds that you have a great support system! ❤❤
Jenny I am thrilled to see your smile and to see that you are choosing yourself too. I cannot imagine how hard it is to relinquish control, but bravo!!! Continued prayers for you and Tony.
🙏🏻🙏🏻🙏🏻
You are amazing! God bless you and Tony and the kiddos. My husband and I had a weird rough day of bickering. Then I started watching the last 4 videos and it made me feel so ashamed and small. I see what others are going through like you and Tony and it puts things in perspective. Lord please bless and heal this beautiful family. I will continue to pray for you all.🙏🏻❤️
You look refreshed! I’m sure you’ll still have your downs, but praying they are few and far between. So good to see Tony. Sending him good vibes. ❤
Thank you so much!!
Have they thought about putting Tony on a bi pap at night to help with his breathing? It would inflate his lungs and help with the pneumonia. My daughter uses one that covers her mouth also ,her mouth falls open when she is sleeping. It is called a Trilogy and is on a high setting because only half her diaphragm works. She uses it only when napping or sleeping. Do ask about the autonomic dysreflexia.
Good to see that you are taking care of yourself so that you can be there for everyone.❤ 😊Sending prayers and positive energy.❤ God Bless!❤😊
Thank you so much for being here! ❤️❤️
I have autonomic neuropathy myself so it is definitely something to explore. Tomorrow, I am meeting with a new neuromuscular doctor to explore my own progressive neurological symptoms. Prayers 🙏🏻 for you'll. ❤
Hi Jenny. You look and seem like you’re doing so much better. I’m happy for you that you’re taking care of yourself. Continued prayers for you all 💕💐💕
This video is excellent. Glad you added God in there. He is our support, strength, and comfort. Went through a journey with my Mom. Wish I had a video like this at the time. Could have used that “permission” to take care of myself and others. Although I have to say many did tell me to take do that, but hearing the way you said it was more in depth. Very nice ❤
Yes! Thank you so much!
Just saw your channel last night . I went back to the beginning to learn more about you . I can’t tell you how 😥sad I felt seeing how Tony’s health has declined ! You will be in my prayers! 🙏🙏🙏
praying for Tony and your family.
It almost sounds like a type of dysautonomia that is occurring. Also I wonder whether there is an autoimmune component as well. You are doing so well in your journey. Does the unit he is on provide counselling services for you? Self care is so very important.
Proud of you, Jenny ❤. I'm praying!
Thank you Janell!! 🥰❤️
I am so happy that you have found a way for self care. You must already know that you are a very strong woman and Tony and you deserve the best ❤It gave me such a relieve that I could hear him talk 🥰 My prayers are with you and your difficult journey 😘😘🙏🙏🙏
Sending you lots of love and prayers. Blessings to you both! ❤❤❤
Thank you!! ❤️
Always praying for you and your family.
Thank you!
Hey Tony.. It is so good seeing and hearing from you. Keep up the hard work and keep us posted!
Jenny... You do look and seem so much better. I think your "parking spot" is perfect. Keep returning to the same spot (mentally and physically)❤
Oh I love that! Mentally and physically… so good! Thank you!! ❤️
Was thinking about you and your family today and worrying about your situation. Love and hugs.
Jenny, just wondering if he could be offered pool therapy. The water is so soothing and allows the body to relax. Praying for you and Tony.
Praying for you and your family!
Thank you Laura! ❤️
Praise God You are feeling better. ✝️ this is a very hard road for you and your family. May God carry you in this difficult time 🙏
Thank you Margaret! I appreciate you being here! ❤️
Praying for you and your family.
Hi! I'm new here so I have some catching up to do. It sounds like Tony might be dealing with an issue with his autonomic nervous system. Praying they get to the bottom of it and he starts feeling better soon :)
Hi, Tony journey. I deal with MS and it's hard going to the cycle not moving very much and everything. So our Persian wishes are with you and Tony and your kids and stuff to me and have a bus to do anything secure. John will cox 😊😊
Thank you John! ❤️
Sending prayers and much love from Massachusetts 🙏🤗😘
Praying for you
This just popped up on my feed, do not know why. So sorry for you painful journey. Have they checked for EDS? Ehler-Danlos Syndrom?
I was going to ask the same thing
Praying 🙏 you are doing well, how’s Tony, haven’t heard how’s Tony and the rest of the family, ❤ sending prayers 🙏
Love and prayers from the Philippines ❤️❤️❤️
❤️❤️❤️
Continuing prayers and sending love! 🙏🙏❤❤❤
Thank you Debbie! We love you! ❤️
God is with you
Blessings...
Praying for both of u I love u guys dearly. Jenny please pray for my brother Marty he is in his final stages of cancer his cancer has spread through out his body they said he could go almost any time l it's sad to watch ur loved one die they are suffering but I know where he s going I know beyond a shadow of a doubt that I will see him again soon please pray that the Lord will give me extra strength to carry on if he makes it till Halloween it will be a miracle I will keep u updated on his condition love u
Beautiful family. ❤ from 🇨🇦
I 🙏🏻🙏🏻🙏🏻🙏🏻everything is ok there, we haven’t seen updates in a month!
Praying for healing
Thank you! ❤️
Dear Jenny, I wonder if Tony has Lyme disease... I have read that it is very hard to diagnose. May God b,ess you both and carry you through this very difficult journey. Please know you are both loved and many people are praying for you and Tony 🙏🙏🙏❤❤❤
I’m so glad he didn’t get the vaccine so that’s not something you have to worry about. Continued prayers for ALL of you! 🙏🏻🙏🏻🙏🏻🙏🏻. Keep taking care of you so you can take care of yours❤️
@@stephsserenity7290 me too! It would have been one more thing to worry about. Thank you for the prayers and for watching! ❤️
Praying
Jenny, look into Ehler-Danlos Syndrome. It sounds like that may be what is going on. Prayers for your family
Blessings to you both.. ⚘️⚘️
Thank you Kathy! ❤️
Im on perm disability. I have severe osteoarthritis, and rods and pins in my neck c3 to c6. I tried working thru it for financial reasons but it became apparent after a car accident that i could no longer bend my neck to type on the PC or answer a phone (i was a soial worker) i had to quit. I am now 60 and its been very difficult. I feel for you and your family and i pray you get this all figured out. Remain faithful. God has a plan and is always there for us. ❤❤❤❤
We need to lift this family up in prayers. My mother had to go in a nursing home and i went everyday , twice a day for over two years. I had to cut back to once a day because of the mental strain. A many of days I had to ask God to give me the strength, and he did.
Hi Jenny was thinking about you hope alls well x
Dear Jenny and Tony,
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
And then took the other, as just as fair,
And having perhaps the better claim,
I’ve thought long and hard about how I wanted to give this to you and this afternoon while idling scrolling I came across what I had been looking for. Though I didn’t realize it until I saw this video on TH-cam. I did briefly consider Gandalf speaking to Bilbo about the road outside his front door, being a LOR fan who read these books to my daughters at bedtime. But Robert Frost was the better choice and wiser decision. We, all of us are on a journey called LIFE. How many times have we come upon ‘two roads that diverge’, daily just by habit I’ll bet. I thought I’d share a couple brief path that I’ve traveled. I want to add that sometimes circumstances will make that choice for us. This first path is one of those. I grew up in a small Maryland suburb right next to the District line, Wash.,D.C., in a neighborhood that could have been painted by Norman Rockwell for Look Magazine. Every summer we’d go to Wisconsin to visit cousins and spend a week with my grandparents. The highlight of that week was the picnic fishing trip with Grandpa. The day began as any sunny day in northern Wisconsin, blue sky and puffy white clouds. Grandpa was getting ready to light a campfire to scorch hotdogs and marshmallows. We were about 30 feet away from Twin Bear Lake, Grandma standing behind Grandpa. Mom, Dad, and my kid sister were standing across from my grandparents with the wood between them, I was about 10’ away with the fire between the lake and me. Grandpa thought he had the fire going, but the wood wasn’t the best, so he squirted some more lighter fluid and was going to try to relight the fire. Nobody saw the small blue alcohol flame still burning and when the fluid hit it the fire raced up and into the can. Then several things happened at once, the fluid exploded out of the lid of the can, a strong gust of wind blew off the lake and a big ball of fire hit me. Mom screamed Billy’s on fire! My dad tried to beat out the flames, I was trying to get to a water pump a few feet away. When my dad couldn’t get the flames out he picked me up and was going to throw me in the lake! Then just as he picked me up another gust of wind came off the lake and blew the fire out! It was the a mad race to the hospital in Ashland where I’d spend the next two months before traveling back to Wash. D.C. and a few more weeks in Children’s Hospital for my next two operations. I’d had two in Ashland and would have two more before starting 8th grade. When my dad and sister met mom and I in Milwaukee on my transition to Children’s Hospital, he came up hugged me and said I could have anything that I wanted. Mom had said numerous times that she wished we’d all go to church as a family, so that’s what I asked for, for him(dad) to go to church. I didn’t choose this path but I was traveling on it. Less than ten years later he died from multiple myeloma. I had an aunt come up and told me that until it became too difficult for him to go almost anywhere, he never missed a Sunday. I’d like to think that I helped save him with my simple request. I could have chosen anything but I knew this was important to Mom. Anyway I got a kitten from one of my roommates in Ashland whose cat had a litter. My path has taken me to the group of cities the border the Mississippi River between Illinois and Iowa, with a path that first took me through northern Wisconsin, fatherhood, a divorce, meeting my wife of 37 years in my church, where she just happened to be visiting looking for a congregation to join. This is where I belong. I cannot feel it, that our paths crossed when we unknowingly were looking for a partner. Her path has been different from mine in that she has mainly remained in the general vicinity she grew up in. I can’t explain it but I was meant to be here and we were meant to be together. On her path an incident happened and quite literally a matter of a few seconds. Had that not occurred both our lives would be different as our paths would also have been.
On TH-cam site Detroit Local 4. |WDIV, is the story of Cecelia Cichan, the lone survivor of Flight 255 crash just after takeoff from the Detroit airport. That settled my mind to write this to your family. We’re on a path and that path is the journey of life. Sometimes we make the choice while other times they’re made for us. Life is a journey and not a destination, full of challenges and opportunities and adventures. As “psyched for life” told you in a post hospice has evolved to help a family by talking care of their loved one thus easing the burden and people do come out of hospice. While a person’s life will change their journey continues beyond their time on this small blue orb as it travels across space.
Two roads diverge in a wood, and I---
Took the one less traveled by,
And that has made all the difference.
How did they label it a “zebra case” when he had been diagnosed much earlier with FSHD? I have a friend with FSHD and these are SO the symptoms she has talked about could/will happen as the disease progresses.
Praying for you in Jesus name Amen 🙏❤️
Hey Sweet Jenny, So glad you're doing some better yourself. You do have to take care of yourself in order to take care of everyone else. Great to see Tony. Still praying & watching old videos. Your NE IN Friend. 😊
Thank you friend! We appreciate you!! ❤️
I have Ehlers Danlos syndrome we are called Zebras
Would he qualify for the Mayo Clinic ?
His mom.should be coming to see him, and his sibblings.
🙏🙏🙏🙏
I have realized that a lot times in the hardest situations that God doesn’t always change the situation but He does change our hearts.
Very true! ❤️
❤
❤❤❤
I did the same thing.
❤❤❤
❤❤❤🙏🏼🙏🏼🙏🏼
🙏🙏🙏🙏💕💕💕
❤❤❤
Endocrinology testing can be helpful too. Obviously his body is deficient in key elements and minerals. There is also different tests that can be ran to see how his body is processing vitamins and nutrients. B5 (Pantethine), B6, Ashwagandha, Iron, Beta Glucan, Probiotics can all help strengthen his body. Magnesium, D3 along with K2 for absorption is also very important. Most of these are NOT going to be picked up on any regular test.
Btw- K2 is NOT the same as K (Potassium).
I wonder if Tony has had the covid vaxes because many people have suffered adverse effects that doctors are having difficulty diagnosing. Hopefully this helps.
She said upthread that he did not. You're right though.
why do you shoot videos in the car? if you and your kids ever need a place to live you can live in my house in california. I live in Joshua tree ca. a 2008 home. 3 bed 2 bath. 2 car garage on 1 acer. the high desert. I could use some company. I go to college in the day. copper mountain college. 57 years old. attend mormon church every Sunday in yucca valley ca.