WHAT IS FSHD? | Rare Disease Diagnosis | Muscular Dystrophy Symptoms + Awareness
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- เผยแพร่เมื่อ 3 ส.ค. 2024
- #jennyandtony #youarestrongerthanyouknow
Hey Friends! Today we are taking a look at FSHD, which is a form of muscular dystrophy. We'll be discussing the origin of this disease, it's symptoms, and possible treatment options. Tony will also be sharing his story of being diagnosed with FSHD. We hope this video brings awareness, information, and encouragement in regard to this important topic. For more information on FSHD, please visit the FSHD Society at www.fshdsociety.org
Thanks for watching!
Jenny and Tony
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Hey Friends! We hope this video was helpful in understanding what FSHD is and how it affects Tony in his life. Thank you for supporting our channel! Please like, comment, subscribe and share to bring more awareness to FSHD! And remember... You’re stronger than you know! 💪🏼
Your husband should do comedy because he's hilarious...especially with that fat joke...OMG...he would be good at it...tell him to look into that...
When you were isolating, I believe you were grieving the loss of your health. Thank you for being brave and courageous in telling your story.
I have fshd too. Learned I had it 3 years after I had my 3rd daughter. It was a relief to know the enemy I was fighting. It's been now 10 years since I learned I have this. Getting close to not walking. Actually feeling relieved at the thought of a power chair with a joystick. I've fought gravity so long. I feel very unsure walking without support of a shopping cart. Looking forward to medicine for a cure or just to slow the disease. My 3rd daughter has this genetic thing too. Praying she gets medicine before she feels the effects.
Hello friend! I felt the same relief after trying to “fight” against something I had no idea of how to fight. There are definitely things I wish I could go back and do with the knowledge I have now such as finishing school and trying more consistently to maintain my strength. I feel that when you do get a powerchair, you’ll regain a lot of those things you may have given up because of safety or endurance concerns. I do feel deeply that a cure/treatment is just around the corner and that your daughter won’t have the same struggles we’ve had/have. Take care and thanks for watching!
Thank you for replying. I'm glad I found you families channel so I don't feel so alone in this "fight"
Loved this video! So informative💜 Also I love the colour coded bookshelf!!
Hi Megan! Thanks for watching our video! The bookshelf does catch the eye! Hope you’re having a great day!! Take care!
Wow, thank you for sharing this.
Hi Thelma! We’re so happy you enjoyed our video! Thank you for watching!
Hi! This was a great and entertaining video. I love getting to know yall and your behavior towards each other and as you talk memories and feelings is fun to watch. 🌟🌻
Hi friend! We’re so glad you’re enjoying our videos! Thanks for watching!!
Great video, really interesting hearing you speak about your road to a diagnosis, so many similarities of experience . thank you for being brave enough to share your story.
Hi Michael! We'd love to hear more about some of the experiences you've had! I feel what you're saying about being brave. It did take me quite a while to wrap my head around sharing our story on TH-cam, but I just began to feel that it was more important to just put myself out there and see if it helps anyone. Take care!
-Tony
Hi Jenny & Tony, I'm new here to your channel. I recently subscribed to Jenny's other channel as well. I'm so glad I found you guys, you both exude positivity and love.
Hi Dana! Welcome to our channel! We're so happy to have you here!
Thanks much for posting your videos and starting this channel! I have fshd and this is quite heartwarming.
Thank you so much for watching Avantika! -Tony
Thsnk you so much Avantika! Nice to meet you! -Jenny 💗
This was amazing. There is a gold mine of information on so many levels. I could write volumes on all the ways this is teaching me mentally, and spiritually. You are both adding so much love into your viewers lives. God bless you both. I am so grateful I found you Jenny For the cleaning and cleaning your way to calm. This channel is an extra blessing
Hi Shoshanna! Reading comments like yours is one of the many reasons we love doing our channel! Have a wonderful day!
You guys... made me cry. 😘 Thanks for this video
Hi Rosa! Thank you for watching our video! We’re so glad you’re enjoying our story! Hope you’re having a great day!
-Tony
You guys have a place deep in my heart after watching this 💞 x thank you for sharing your story Tony and getting more information out there on your condition. Also showing what real love is as we watch how Jenny is looking at you throughout xx keep being strong and an inspiration to us all x lots of love and affection Mary xx 🙏❤🏴 xx
Mary...😭 You are so kind!! Thank you for watching, friend! You are special to us too! Take care! 😘🥰❤️🙏🏻
Thank you so much Mary! - Tony
Great video, made me cry! 😓 But, made me so happy to see you guys so happy together!!! 💕❤️ Tony you are such an inspiration!! Much Love!!!
Aw, thank you Kristin!! Much love right back to you! 🥰😘❤️😊
Thank you Kristin!!! -Tony
Thank you so much for sharing your storie so we all understand much better Tony ,and seing the love and apathy Jenny has for you ❤️🌹
Netty Lhomme Thank you so much Netty! Have a wonderful weekend! 💗😊
Thank you Netty! So glad you enjoyed this episode! -Tony
I just subscribed and Iam really liking your channel I will watch from now on trying not to miss a one
Hi Sonja! Thank you for watching our video! Jen and I are so happy that you're enjoying our channel! Stay tuned for more!
Thanks for sharing your story so publically. I too have a rare disease and it's so frustrating just to get a diagnosis.
Took me years of seeing many neurologists who were clueless because they just had no idea what the heck they were looking at.
Finally a curious Rehab Medicine doctor ordered an MRI and found the problem and it was Syringomyelia.
So I have a hole in my spinal cord that 6 neurologists totally missed. Imagine that.
If just one of them had ordered an MRI instead of treating me like I was crazy and just fat I would have had my answer years earlier.
I found your videos looking for a motorized wheelchair and was so happy to see that you've found love and a life worth living.
Gives me hope that maybe I too can find a relationship one day if I can get my life back once I get a wheelchair.
I've been struggling with a walker and canes and like you falling and unable to do much.
It's time to face reality and see if a chair opens the doors that I've closed.
Thanks for sharing and God bless you both.
Hi Christine! I couldn’t imagine having to go through so many specialists and appointments to finally get a diagnosis! It’s good that you were persistent! The biggest obstacle for me was fear... but I know it was a huge relief when I got diagnosed and that the ‘enemy’ finally had a name! Having that allowed me to put my muscular dystrophy in its place and also gave me a frame of mind on how I would tackle life from here on. I’m so glad that you’ve found our channel! I’m still getting used to doing the whole TH-cam thing, but I feel so encouraged to keep doing more when I see the comments come in like yours! Also, I hope you check out the video of the Spinergy ZX-1 that I’ll be reviewing soon! So nice to meet you! Take care and stay strong!
Hello from Laporte County IN (1hr west of Warsaw, off US 30). I have enjoyed watching your videos. I am 45 w/ FSHD (T1) aswell. Tony, I have to say that you remind me alot of my older brother who passed nearly 5 years ago from CHF related to FSHD.
Hello friend and neighbor! We're really glad you're enjoying our channel!
i'm 68 and everytime i watch any video about a disease I have all the symptoms, i wonder how a doctor would ever get to the bottom of anything when they don't even run tests on most seniors anymore cause the advantage plans don't allow it
Very informative, your story is so inspiring. Someone out there who is dealing with this illness needs to watch and know what is possible.
Amy Sherman Thank you Amy! We appreciate that. 💗 Thanks for watching! -Jenny
Thank you Amy! We’re more than happy to help! -Tony
Toni, you are a lucky guy! You & Jenny were meant to be! Love listening to the your real life stories.. My friend was born with MS. She has a similar story to you and she doesn’t let it get her down. She’s full of life .. huge personality. I love her to pieces! So I’m familiar with MS but I am listening & still learning. You guys are blessed with a beautiful family. I’m so glad y’all are sharing this!! Thank you. Take care.
Thank you Ann! Being blessed with such an amazing family is honestly what keeps me going!!! -Tony
Jenny and Tony Amen 🙌🏼
This was so informative and I’m glad to get to know more about FSHD and your story Tony. Thanks for sharing 😊❤️👏🏽
LOL not all of the physical ones!!! Love it Jenny! Tony you are still a HAM! You both are lovely and are such a beautiful couple! 😊❤️👏🏽🥰
Thanks for watching, Brittany! 💗😊
Brittany Bilunes Lol!! 🤣 I agree, he’s still a ham! 😂Thanks Brittany! 💗
Thank you Brittany! I feel the inner ham is beginning to wake up :) -Tony
Jenny and Tony 🤣👍🏽😊❤️
My drop foot caused me many falls and a few broken bones plus 1 concusion! I explained it to be like stepping into a hidden hole and Rag Doll me to the ground hard. I realzed now LOL, its hard to fall from a wheelchair! I last heard there are around 150 different MDs out there. I still often wonder if my Dx should have stayed as FSHD rather then re diagnosis of sIBM? but then again, I am just a retired trucker not a Nuromuscular specialist haha. Super glad I found your channel. Keep the dark days at bay friends.
Hi John! I survived too many spills and falls (even down half a flight of stairs!) to drop foot and rolling ankles that I lost count and conceded to using a wheelchair. And yes!, the rag doll reference is spot on! I used to say that I’d collapse as fast as a Jenga tower! The list of dystrophies has definitely grown! I’m really glad you’ve found our channel! I’ll definitely keep fighting the good fight against those dark days! Take care and stay strong my friend!
Great video guys! I can totally relate to your story. I have a form of MD too (Limb-Girdle) that affects my proximal muscles. My story is so similar to yours - was a basketball player in high school (albeit a bench warmer most of the time - lol) but I did play at a high level. The only sense I had back then that something wasn't right was I was a very slow runner. As the years went on, the falls started to happen and I went to doc to found out why. Several doctors later, I was referred to the University of Miami school of neurology and they nailed my diagnosis. Still remember the neurologist telling me he has good news and bad news - good news is what you have probably won't kill you - bad news is you will progressively become disabled. That was a punch to the gut for me but I have managed to deal with the situation day by day - no regrets. I also remember when walking became nothing more than a total fear of falling exercise - not fun. So when I finally gave in (actually my wife persuaded me because I was stubborn) and bought a small mobility scooter - it was actually a giant relief - I didn't have to worry anymore about my knees giving out and going down. Sorry for the long winded comments - but just want to say I thoroughly enjoy your videos - you guys are rock stars!
Hi Nick! Man, thank you for sharing your story! And you're absolutely right, there are so many similarities in our stories. I'm struggling with my progression right now. Mostly in the sense that I don't know how much I can give to this thing. I've been busting my butt playing catch up in life and I'm so late in the game. The more I fight against it, the more my body weakens. I'm hoping to find that balance between work, life, and my disability. It's not a fun place to be, but I have to keep my attitude in check and put it on God. Thank you again for all of your awesome comments! Keep in touch and stay strong!
@@jennyandtony One day at a time Tony - that's how I approach it. This thing is like a staircase - you coast along at a certain level and then notice you take a step down in performance. I went from using a cane, to using two canes to using a scooter and then on to a wheelchair and power chair which I use interchangeably now. Along the way, I managed to fracture my knee cap, pelvis and leg over the years - it's like we are at war but it's worth the fight. My current struggle is I sit so long now in my wheelchair/power chair that my butt is getting very sore. A literal and figurative pain in the you know what - lol. I go down to Miami next week to see a wheelchair seating specialist - we'll see how that goes. You are blessed you have a little guy now and also the older kids too - that's a big deal that some guys never experience. We have four boys of our own - family is the best. Hats off to our wives for going through this journey with us - they are warriors as well in their own caring way. I'll touch base with you ever now and then if you don't mind. Have a nice Thanksgiving and Merry Christmas!
Hey Nick! Thanks for responding! I totally get what you've gone through. The staircase analogy fits perfectly for me too. I'll have a time where my disability progresses rapidly then levels off for a time, and it just repeats. It sucks and its frustrating...
I know that the seating specialist is going to have a solution for what you're going through! There are a bunch of awesome materials that make sitting in your chair all day almost a non issue. I'm in my chair sometimes16-18 hours out of the day and over time, have lost most of my natural "padding" in my rear. I rarely experience pain from sitting for that long.
Looking at my son every day I know full on what a blessing he is. I had told myself that having a girlfriend, let alone a wife and stepchildren, and even a child of my own was never going to happen in my lifetime. They are my why in life. Family is truly the best. And yes, our wives deserve major kudos for taking this journey with us! I absolutely don't mind at all if you reach out! DM through Instagram if you want and I'll send you an email address. Take care and I look forward to hearing from you. Have an amazing Thanksgiving and Christmas season as well!
Great video! I can’t understand what you said you used before you went into the wheel chair full time?
Hi Christina! Thanks for watching our video! Before I had to use my wheelchair full time, I used to walk around the house using forearm crutches. I had a way I could stand back then, but I still used my wheelchair most of the time inside and all of the time we would leave the house. It was when I had those three bad falls within a week that I knew switching to the wheelchair full time was what I needed to do. So nice to meet you! Hope you have a great day!
I'm a FSHD too
Hi He! Welcome to our channel!
Hello Toni my friend, how are you? I'm fine and you and Jenny are fine too. What is your son always playing? He's so cute, luckily God was so good and gave you a son. He'll surely take care of you later when he grows up. I have no wife and no children myself. I am always happy when I get an answer from you that is so nice that I think we have both become real friends, I feel that
Hi Mario! Glad you are well!! Alex just loves to play and figure things out! He can keep himself entertained with paper cups even! Jen and I are definitely blessed with all of our children! I’m glad we have become friends as well!
Thank goodness for friends and wheelchairs!
Hi Anne! How very true! Thanks for watching! Hope you're having a great day!
What tests should someone do to diagnose?
Hello friend! I would strongly encourage you to speak with your personal care physician or contact the FSHD Society @ www.fshdsociety.org
Check out Dr. Fran sverdrup's lab. He is one of the leading researchers in the battle against FSHD. He is close to finding a proper therapy, I would encourage you to reach out to him.
Hi Andrew! Thank you so much for the information! We haven’t heard of Dr. Sverdrup! I’ll definitely make sure to reach out! Take care and have a wonderful day!
@@jennyandtony You as well 😁
Hi ma'am/ sir I'm shielamae laroga from Philippines 24 yrs old I'm diagnosis of FSHD i need to biopsy muscle for work up ma'am
Hi Shiela! So nice to meet you! I would use FHSD Society or FSHD Global as a resource.
Hello sir/Mam
I'm also patient of FSHD pls provide how to treatment FSHD
Im only 22 years old and i was showing in my twenties
Hello friend! Sadly there are no treatments currently although there are a number of promising therapies that look to be coming out soon! Stay strong!
@@jennyandtony so Mam pls confirm what i do because my FSHD disease increase day by day and this is injured my both shoulder and my both shoulder don't lift up I never hands up
Pls provide me best suggestions. It's my humble request to you
Regards
Is there's a charity ma'am for FSHD can u help me doctor said I'm going to Physical therapy but I don't have money if there's a charity foundation can I join mam 🙏🥺
Hi Shiela! Have you tried FSHD Society or FSHD Global?