Thanks so much for making this video! I was just diagnosed around Thanksgiving this year! 🎉Prayers for you and appreciate the channel, I'll be watching!

Thank you Richard and Jerry for encouraging the fight in all of us.

Merci Richard pour cette chanson très inspirante pour moi aussi avec IBM du Québec

Condolences to Cindy and family members. No person or organization has been more helpful in dealing with all aspects of IBM. Jerry’s videos represent an encyclopedia of useful, practical information. His contributions to the IBM community will not be forgotten. I continually marveled at his mastery of technology to produce them and how accurate and beneficial they are . He has made IBM’ers journey much more doable. Thank you Cindy, for being such a help mate and a role model as a care giver.

Thank you for sharing your journey here Jerry. Have you by any chance researched foundational cellular medicine and clinical level cellular detoxification to target DNA methylation and repair to reverse autoimmunity?

I've tentativly been diagnosed with Poly-myositis after being on atorvastatin for over a year. My CK took off at 5975. But I'm finally getting a muscle biopsy after 5 months. Got a new doctor who really cares about me. I seem to have plateaued out. Not getting any worse. On prednisone now 30 mg a day. Trying to beat this thing!

Well done Jerry the words ring so true thank you ive got to share 💕

As a fellow sufferer, THANKS just isn't enough. As a Latino, from what I know, this autoimmune curse, is even more rare. Which of course, doesn't matter, so I remain hopeful, given the fact que La Lucha continua (that the struggle remains), pero si se puede! (but yes we can!). Having said that I've come to the realization, that like myself, you are a fighter. Stay well my brother in IBM. God Bless.

Thanks, Jerry. Those words are very powerful - sad but also with an underlying sense of strength of character. Proud to be one of your "students". Thanks for giving so much to the IBM community.

How do you rotate in bed?

I love it. Thanks!

Rheta said the best thing she ever saw! “Jerry you are an amazing person!”

Mooi liedje over ibm

Hi Jerry, tnx for sharing this o so true song! So many IBM fighters looking for solutions in their continue battle. I hope, like you, to help with solutions and handy tools to make the battle easier. www.youtube.com/@MartsHulpmiddelentips Keep up the good work! Mart

Wow…what a beautiful song! Thank you Jerry for sharing and Richard & son for creating this song. 🩵

I love this song! I have Polymyositis with Interstitial Lung Disease. Thank you for putting our thoughts and emotions into a song. Definitely playing this for my family. Hope it continues to inspire the Myositis Community 👏🏽👏🏽👏🏽

Thanks for sharing Jerry. Richard… Great song… Thank you! Richard, it is a small world, my father was born in Mapleton and I grew up in Orem. I hope you’re doing well. Take care.

Beautiful and so true … thank you for putting our thoughts into words and music🙏

Thanks for sharing Jerry. Much love coming your way!

Thank you.....very informative. I'll be perusing you other videos on IBM

Pleased to see you again, you are a inspiration to us all take care

Another wonderful and informative episode. Thank you so much for your efforts in keeping us all educated. Safe travels alone your IBM journey.

Hello I hope you are doing well I have just seen your video which was interesting I was diagnosed with IBM recently and would like to here some advise as well as to know if there has been a cure found for it Kind regards,

You are amazing! Thank you for educating me on how to live with this awful disease.

Great to see you again! I am adding this video to my library for future reference. Thanks for doing my homework for me and explaining it to me.

Thanks again Jerry! You always give me considerations and options for my future needs.

Another informative video Jerry! Take care!

Thank you for sharing.

Hi there I have been just diagnosed with IBM. Thank you for sharing your story

I have a very recent diagnosis. Thank you, Jerry and Cindy, for your videos. I have a lot to learn.

Hi Jerry, how are you? Long time since your last video. Looking forward to a new one. Keep up the good work my IBM friend.

Thank you for sharing your story and spreading awareness.

Thank you for this suggestion. My husband has IBM and as well as difficulties turning over, he slips down the bed and can't move back. Any suggestions? Maralyn

Hello Jerry. I use a similar risky technique. Do you use the same method to get back into the wheelchair? Thanks again for your magnificent work in helping sufferers of IBM. In the UK, very little information is available to help victims of this disease with pracrical help. Kind regards Peter Vickers.

No subscribe button Gerry

Hope you and Cindy are keeping well.

Jerry, my sincere thanks for your wonderful in providing the series of videos. I live in the UK and that the level of practical knowledge to cope with IBM on a daily basis is very limited. My diagnosis in 2019 was fairly speedy, due to the experience of two excellent Consultant Neurologists. However, because the disease is very limited in the UK, the joined-up day-to-day assistance is hard to find. I have adopted many of your suggestions on equipment and methodology which have been invaluable. Although not very palatable to discuss toileting is a particular problem for me. Any advice you may have on methods to allow safe urinating during the night and cleaning after opening the bowels. My gluteal muscles are so weak that rhe bidet spray does not reach the appropriate areas. Any help would be appreciated. Regards

i got this at 20 years old im 25 now

Thank you for sharing! How are you doing now months after the surgery?

Wow thank you!!! This is so helpful!!

Hi Jerry, When you first had symptoms, did you only feel weakness in the muscles? Did you feel any other sensations like burning or something like your muscles were being attacked and it felt really uncomfortable or kept you awake at night? Also, was it just your quadriceps and the shin muscles affected in your legs? Did it affect your calf muscles and your glutes? Did it affect your outer forearms - the flexor carpi radialis? That’s the forearm muscle on the outside away from your stomach.

I just watched a few of your videos, and you are an inspiration, for all of your struggles, you have an amazing mind and an incredible presentation. My mom passed several years ago, she was never officially diagnosed, but it sounds like you and she share a lot of symptoms. She had her esophagus stretched multiple times, and she was always choking up what she would call a case of the bubbles. She had the low blood levels that required transfusions and special shots for maintenance. She was also diagnosed with carpal tunnel. Couple that with Raynaud's phenomenon and you know she suffered, and as I cared for her, I always hoped that I wouldn't have what she had, but I didn't know that those were all symptoms of Myositis, the wasting, the inability to raise her arms, all of it, and unfortunately I think that a lot of the treatment that she had just made her sicker. She died after a bout with pneumonia and sepsis. I admire how you've maintained your faculties the way that you have, I'm grateful for your sharing. Good for you for doing this, I appreciate you.

You are so awesome thank you Jerry for all these helpful videos

I have to admit, I have not been diagnosed with IBM, but I am thinking I might have, as My muscles feel like they are tearing, feels like tenons and connective tissue, this has been over a year, but now my hands hardly work, forget opening jars or picking stuff up, my arms and in right leg my foot drops when walking, but here’s the thing, Doctor says Creatin Kinase (inflammation markers) is normal, which I researched on Internet is, CK can be normal, and you can still have IBM. so she does not know, so going to see Rhuemoloogist. It keeps getting worse as my jaw is now effected, did I mention I have swallowing issues. The IBM diagnoses is the only thing that makes sense. I am going to ask for muscle test next. I am glad to hear you are finding ways to help cope with walking aids, scooter, etc. It says this was 3 yrs ago, so hoping you are still managing your symptoms. Love and Light. ✨❤️🙏

Thank you so much

hi Jerry, just wondering where did you buy the cup, i have tried lots, they don’t work, also, i need to use an inhaler, but don’t have the strength to push the button, any ideas? thanks.

Thank you Gerry for giving me the platform to air my ongoing ibm

I have suffered from ibm for 10 years now it took 3 years to get the diagnosis of this wretched condition it manifested itself while walking on the beach my right leg folded on me I thought that I had stood on a bit of quicksand so thought no more of it that was the beginning of the battle against gravity which I continue to battle though as my consultant said ibm will not kill you but a fall will I am in pain all the time with muscle spasm my last fall caused two broken ribs that was about a year ago so I have been fall free since then I am now wheelchair bound and have all the help I need at the moment friends don’t visit as often now they all comment how well I look to which I counter it’s not my face that’s the problem I see things differently my mind is sharp and my sense of humour has not abandoned me recently I found difficulty with my hands I can’t grip anything so items fall all the time as well as ibm I am an insulin controlled diabetic so I’m kept busy running my body efficiently casting my mind way back to a diabetic clinic about15 years ago they weighed me and said that I had lost 7 kilos I took this as a welcome sign as did the clinic that my diet was really good I had reason to believe otherwise but now the reason for the weight loss was the onset of ibm at my recent diabetic clinic they registered a 2 kilo loss in weight I now know just how heavy muscle is the social side of life is very difficult when it comes to access some of our friends may just as well live behind a raised drawbridge the psychological effects on one are complicated for 70 years I took walking without a thought now that side of life needs great care so what I’m saying is we have to undo the basics before we do anything if it’s hard for me it’s much harder for my family

Bless you, Jerry. Thank you for sharing how you manage and the tips you have and the great attitude ❤❤❤

Very informative video. I was diagnosed with IBM IN 2014 I luck I am still able to walk with the walker. I have had about 50 falls in those 10 years. Twice, i fractured my toes on my left in the last 5 years. Once, I fractured two fingers on my rt hand.. I have been denied the trial because I had low platelets about 40 years ago. I went through the treatment and the same year went back to normal. This is the brief synopsis. Thank you.