Having muscular dystrophy too, I can relate to what Tony's going through. In 2013 I fell and fractured my pelvis. It was the worst pain. It took 2 and half months in rehab to heal but I still have bouts of pain sitting in my power chair - until just recently. My PT suggested I get fitted for a custom molded wheelchair cushion. I've had it a few months now and I can make it through the day now with minimal if any pain. Maybe you can discuss this option with his health care team. It could be a game changer for him. Give Tony my best regards (we have texted and traded war stories before so he might remember me). Nick...
@@Get__StuffDone your doctor can write you a script and NuMotion was the company that sent a team out to my home to make the mold which they use to make the custom cushion. It takes all the pressure off your dit bones and redistributes it onto the front bottom of your legs and lower back side.
Jenny I went through this two years ago, they did a surgery on me to pull skin over the bone and close the wound, its called a FLAP surgery. If you can research it and find a doctor that will do it, it could save his life. My pressure sore didnt present on the outside either. I was SO septic and kind of having cognitive issues as well. I have completely healed now but it was a long journey to heal.
I'm 14 weeks post sepsis,I was put on life support... When I was finally taken off life support, I experienced ICU/life support delirium and it was the scariest experience of my life!!! It lasted 5 days for me... the meds they give to keep u unconscious on life support are INSANE!! I am little... 5 feet tall... I was placed in a crib bc of how aggressive I was. When u have this psychosis ur completely unaware yet somewhat aware... everything that u remember experiencing is an absolute FACT in ur mind. I don't know how to explain it. Its not fun tho... I know that.
Thank you Tony, after all you have been through, you put Jenny's well being first. To advise her to keep documenting in order to help her through this is a great idea! Jenny, it sounds like you have a very good medical support system now. Please continue to keep updating. Praying daily!🙏
Hospice isn't giving up. Sometimes people end up graduating from it back to lower level care. It really helps meet complex care needs. Whatever you both choose I pray it meets both of your needs and helps him have a good quality of life with you and the kids. ❤ Im a caregiver. All of my clients are on medicaid and have lost their previous physical abilities, careers, social life and time with family. The grief is real. Maybe you could attend a support group meeting on grief and Tony could get a grief informed counselor to help him through these significant life changes.
🦉 Happened upon your prior heartbreaking car video. You are truly blessed with a compassionate mind, body and soul capable of handling your husband’s, children’s and your own personal needs with such inner strength and foresight. Thank you for sharing info regarding Hospice Care. I pray your family’s situation will soon be resolved in a manner that brings comfort and happiness to everyone’s daily routine. On another note…my mother carried a gene from her mom called Duchenne’s Muscular Dystrophy. The females carry the gene that most unfortunately shortens the lifespan of male offspring. Mom lost two brothers back in the day when polio was a major issue. She always thought that was the cause of their deaths early in life until my two brothers, seven years apart, were later born in the 60’s. Both Eddie and Elliott sadly passed away around the age of twenty-one. Such a heartbreaking illness to bare witness to watching all muscle deterioration progress throughout their young years of life. 🙏
I don’t know about your state, but one option is palliative care. That might be what your SW means by hospice. In our state it means helping him not be in pain as other services are used. He can “graduate” from palliative care also. It doesn’t have to lead to hospice (in my state’s terms). 🙏🏻🙏🏻🙏🏻for you all!
Years ago before my diagnosis in May 2014, I came to decision. That at the end of each day I would tell myself that I did my best. I had to train my brain to acknowledge this and not compare it with the previous day or other days that I might have been more productive. Having done this I’m better able to relax in the evening and get a better night’s sleep and feel refreshed in the morning. Prior to this epiphany of sorts, I would be very critical of myself for not achieving some chore or work that I needed to do but didn’t. I tend to accept people the same way now and not think negatively about them because I don’t know what their day was like before we’d interacted on some level and I try not to compare my day with theirs. It’s helped me a lot because it seems that there’s always more things that need to be done and no one’s able to do it all. So I’m glad to learn you’re giving yourself and Tony respites.
Your comment is so insightful and full of grace and love toward yourself and others around you! It's a great reminder to all of us when the challenges of life seem overwhelming . I hope you are doing well!🙏❤
Hospice is wonderful. We had it for my Mom and it was a blessing. My mom was paralyzed with a stroke and they got everything we needed. What a blessing it was.my sister and I took care of mom for 2 1/2 years. You have to do what is best for all of you.
I pray for you and Tony often. Thank you for taking some time to keep us updated. I am so glad to hear a plan is being put in place for where to go from here.
God bless you, Tony and your entire family. You are all in our prayers daily. I think your decision for some longer term rehab is the right one. Take it one day at a time and take a little time for you and your children. You need that time. God bless you all and keep you in his care. 🙏♥️🙏
Jenny, for some reason I was unsubscribed from this channel so I was not getti g updates! I am on your Instagram and noticed your post from here...thank goodness! I resubscribed to this channel, so now i will be following in real time again. Thank you for these informative updates. I have never stopped praying and looking for updates. I am so relieved how much better you look and sound in this update from part 1. Goodness gravy! So much has happened in such a short time. I am rejoicing with you for all the positives this week and praying for continued guidance and healing. You are amazing, and I am so proud of you and Tony for your tenacity, strength, courage, and all the things. You guys are amazing. I love you and am praying continually, friend!!!!! Lookingforward to catching up on the other posts, too. ❤
It sounds like the best decision for Tony at this time, you do need rest to even thnk well. I know I was a caregiver for my Dad for 10 years with ALZ and no help! I wish you both the very best and hope he can get to the facility soon, I think he will feel much better being out of a traditional hospital. It is hard to recover in the hospital with all the noises and interuptions rest is even hard. I am so glad you had a chance to speak with the professionals. Praying for you and your family! God Bless!
Thank you for this update. You look so much more calm and relaxed. So happy to hear that you and Tony and his medical team had the long term care discussion before he had to go back into the hospital and decisions were made for everyone's benefit. I'm sure having a plan going forward has been a tremendous burden lifted. You and Tony and family continue to be in my prayers.
My daughter has a spinal cord injury and gets botox injections in her bladder because when her bladder spasms she gets autonomic disreflexia which causes her blood pressure to soar and heart to race and her vitals to go crazy. Also any pain below her injury can cause it to happen. Might help to look into that. Keep praying!
I know how difficult it is to care for your spouse. It’s physically, mentally and emotionally exhausting. Everyone says take care of your self, but how can you do that. Give yourself lots and lots of grace. Prayers for all of the family. Hospice is wonderful, my husband was on hospice for 1 1/2 , they can come help do some of his daily need, which in turn helps you, plus they provide for all his needs
Look into Primal Trust...helps the nervous system regulation. He may be in a flight or flight state where its hard to heal. People have healed from hospice beds and from very serious conditions! Wishing your family well!
Something to consider is heavy metal toxins. Conventional doctors are very reluctant to address because of liabilities. A simple hair test that you can order w/o a prescription will tell a lot about our minerals. Toxins are responsible for sooo much illness. Autoimmune… Could your husband have been in exposed to something toxic? It certainly could cause a body to go haywire. Chelation or available. Doctors can do much for it because of the liability factor. Millions are affected, (Autism) but we’re doing DIY healing… pm if you’d like more info… 💜 PS Amalgams?
Thanks for sharing your journey. You just popped up in my feed today, but you seem like such a supportive and loving wife. My prayers to all of you as you make these tough decisions. You are right, hospice can easily be graduated from and may give you all the break you so need.
I’m new to your channel and the first I viewed was video prior to this one. I was praying for you and I’m very happy to see you much calmer. Having a plan in place that addresses the issues that both you and Tony face is a real game changer I’m sure. I will look to view older videos if that can help you out. Give it all to Jesus and he will help you maneuver and discern good paths moving forward. Continued prayers for you and your family. Anne
Jenny if nothing else consider this a personal journey for yourself and Tony as well as the kids to see the changes and how you have grown together as well as apart. Mentally as well as physically and emotionally.
Missed your video from 8 days ago, I’ll have to go back and catch up on it. I had asked during one of the 30 minutes prior to the Monday Wellness Webinar, but hadn’t heard much of anything. On how both of you were doing? You seemed to be meeting life’s challenges head on and rising above all the turmoil and stress that goes with it. Glad to see your back but feel so bad that Tony is dealing with these health issues.wishing you both a speedy recovery.
You look so beautiful today and not so stressed hope you’re taking time for you we need you as well rested as possible because we surely missed you guys ❤❤❤❤❤❤❤🎉🎉🎉🎉🎉
Just tuning in while painting a room. I'll do some watching. I'm sorry you are dealing with this. I deal with some really hard life situations also. When you said (paraphrase), "It is what it is and you have to find the silver lining and just do the best you can" made me feel uplifted, so thank you for that. 🙂
I’m so glad to hear from Tony he’s still in good spirits we all have good and bad days people that have disabilities or don’t we just say our prayers and smile happy thoughts❤. Tony is strong and so are you
My mom gets the same way in the ICU. It's scary and kinda funny at the same time. My mom has been chronically sick for almost 2 years. Going into the hospital almost every month.. sending prayers.
Carnivore diet could be liquified into a soup consistency using a Ninja or another type of food processor. Could also include veggies and fruits for a different flavor base.🥩
Jenny, Thank you for the update. I've been turning on your long Playlist at night & letting them run all night. My wkly report said that my YT viewing was up 8 hrs a day from last wk (so 60 hours watching your videos). Hope that helps y'all. 😊 How is Tony's family doing being so far from him? My sister goes to the chiropractor to get her sacrum put back in place. Ouch. I'm praying daily for y'all. Your NE IN friend. 😊
my mom was sent home from hospital after having trouble swallowing and put on hospice. They brought her morphine, and a few other drugs. First time we gave her the morphine she went in a coma and was gone a couple days later. it was so fast.
I’m really sorry that your family is going through this. I know how devastating this is. Just a thought especially when you mentioned that he was sepsis…was he given fluoroquinolone antibiotics? I had this same experience 4 times, and was bedridden for a year. Unable to sit up on my own, unable to move my legs, and the pain was incredible. No one including the Cleveland Clinic could figure it out. This sounds very similar to my situation. Dr. Hugh Wegwerth, helped me…
I just wanted to say that I’m sorry for your experience. I was given levaquin (one of the fluoroquinolones) when I was 14 and I was very athletic. I ended up with widespread tendinitis and it was my physical therapist (for athletes/dancers) who I was seeing regularly who realized that levaquin can do this. Luckily I was able to stop before anything horrific happened. It wasn’t recommended for people under 18 or athletic people. A doctor at a very respected hospital had given it to me knowing I was seriously athletic. It was a very difficult time especially being 14. Luckily I wasn’t bed ridden but it was very painful and i also wasn’t back to normal until a year later. I will never take fluoroquinolones again (unless it’s absolutely necessary and the only option).
Hi so sorry your going through all this my husband went through kidney failure and Iwe got support from kidney foundation but if he has ms if he does the foundation or muscular dystrophy. They can tell you how to get help. You look so pretty today. Hang in there church helped us out prayers are with you
Have him get a methylmalonic acid test and a homocystiene test, and copper test, and an "ACTIVE B 12" test...... it's important. And vitamin D levels test.
I'm sorry if i'm stating the obvious, but re Tony's delusions, you said they started after he took antibiotics? My disabled daughter had hallucinations after she was prescribed penicillin, we took her off them & the hallucinations stopped, she was given an alternative antibiotic & was fine. I know Tony's is a more complex case & you're very aware & involved in his welfare but sometimes simple things are overlooked Wishing you love & God Bless
I know I am a stranger, but I love you and Tony so much. I am so glad that you can find the silver lining in a bad situation. I am glad you are not giving up. Your plan for long term care and rehab sounds hopeful. My best wishes and prayers for healing for Tony so he can make the transition to that. Sorry for going on like this, I just feel such a connection. I am so glad that your mother is so supportive! ❤❤❤
Im so sorry for all your going through! ❤ i went through a very rough time last year with my mom and they couldn’t figure out what was wrong.😢 at the end she had an infection in her blood and also went septic 😢 due to a wound she had she was in a nursing home due to all her medical issues. I’m sure they’ve done everything but have they checked if it’s lime disease? It sounds like his body is attacking itself. I truly hope they can find out what is going on! God bless you and Tony!!! As well as your home family ❤
Jenny get a notebook or several pieces of paper, and watch this exact youtube video, all the way to the end, and take good notes. Make a list of all of the symptoms that Tony has, that's in the video. Almost zero doctors know the information in the video. It might be helpful information. The exact video is so important. It's called "DIAGNOSING AND TREATING VITAMIN B 12 DEFICIENCY. " I can almost guarantee they aren't treating the B 12 deficiency correctly, almost nobody does. 🙁 The man wearing a yellow shirt is a doctor who had a long list of symptoms that were getting worse and worse, and nobody could figure out what it was, ❤ including psychosis ❤ and a long list of medical issues. His friend carried him and put him in the car and drove him to a DIFFERENT hospital where they finally diagnosed him correctly. Do NOT let them give him cyanocobalamin. For many people it makes things worse. Almost nobody treats this correctly. The guy in the video IS A DOCTOR, and he Almost died because he didn't figure out why he was having a long list of horrible symptoms that kept getting worse. (If it's not treated * the way that video tells you to*, its probably not going to get better. ) It's explained in the video. It's dangerous to not treat it correctly. Also there's a book you can buy one copy for you and extra copies for anyone who is trying to fix him. BOOK IS BY ONE OF THE NURSES AND AN E.R. DOCTOR FROM THE VIDEO, BOOK TITLE - called "COULD IT BE B-12 ? AN EPIDEMIC OF MISDIAGNOSIS" It takes DAILY INJECTIONS of METHYLCOBALAMIN. plus other things to turn it around. It's explained in that book and video. You'll have to demand it, there's so many important things explained in that book and video. ❤❤❤ if this is part of what's happening, it's really important to get him started asap with the correct treatment, aggressively. Just taking pill vitamins like a regular healthy person isn't enough. .and the tests they use is wrong, and the parameters they call normal is wrong etc. ((You need to be your own advocate and stand up for yourself once you find out, if this is part of what's going on. )) (( Pyschosis is part of the ,symptoms and a lot of these symptoms ARE REVERSIBLE if you hurry. )) Excellent helpful video. Blessings to you and Tony and kids. ❤ Maybe Have someone else watch that video too, so you can talk about it together. ❤ SORRY this is so long. Having trouble breathing can be from anemia caused by the B 12 deficiency. They need to test the ACTIVE B 12 levels, because that's the only kind that helps. And many people absolutely cant convert cyanocobalamin into the usable form of B-12 called METHYLCOBALAMIN. Cyanocobalamin just clogs up the receptor sites, so methylcobalamin can't get in.
Can you yours recall any different that changed or happened before he started getting sick? Did he get bit by anything? Ticks, spiders? Maybe without you guys even realizing. A cut? Even if it’s a paper cut. I’m sorry for so many questions it’s just some times it could be the smallest thing to cause something so bad
The Mediterranean diet is considered the best long term healthiest diet. A couple issues with the carnivore diet, it is taxing on the kidneys and also lacks fiber. If someone was relatively healthy, these fad diets wouldn't be such a concern but with Tony's medical issues, a less drastic diet is a safer option. When Tony was home, did he get regular PT or exercise? That would definitely be a good thing to do if and when he returns home. Keeping you all in prayer. God is the Great Physician 🙏
Thanks so much for telling you have a brave husband and he has a brave wife you are both mend to be for one and other real soul maids sending to you and the whole family my love 🫶🌹
Jenny if nothing else consider this a personal journey for yourself and Tony as well as the kids to see the changes and how you have grown together as well as apart. Mentally as well as physically and emotionally.
I’m really sorry that your family is going through this. I know how devastating this is. Just a thought especially when you mentioned that he was sepsis…was he given fluoroquinolone antibiotics? I had this same experience 4 times, and was bedridden for a year. Unable to sit up on my own, unable to move my legs, and the pain was incredible. No one including the Cleveland Clinic could figure it out. This sounds very similar to my situation. Dr. Hugh Wegwerth, helped me…
