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wandering music
United States
เข้าร่วมเมื่อ 21 ม.ค. 2014
Currently a place to document my journey with necrotizing myositis. How it impacts my daily living and what the treatment regimen is. Sprinkled with my personal brand of humor of course :)
Myositis Journey E29: Physical Therapy and Milton
Physical Therapy Updates
Short update about Milton
(0:00): Intro
(0:12):Hurricane Milton
(2:57): Physical Therapy
(3:15): Pool Therapy
(4:55): Progress Check on Strength
(6:04): Light Headed and Numb Face
(8:06): Other Improvements
(9:35):Thank You!
Short update about Milton
(0:00): Intro
(0:12):Hurricane Milton
(2:57): Physical Therapy
(3:15): Pool Therapy
(4:55): Progress Check on Strength
(6:04): Light Headed and Numb Face
(8:06): Other Improvements
(9:35):Thank You!
มุมมอง: 208
วีดีโอ
Myositis Journey E28: Rituximab Round 3 + Progress
มุมมอง 4054 หลายเดือนก่อน
Latest updates and more progress :) (0:00): Intro (0:18):Infusion Recaps (1:25):Improvements (1:37):Whistling (2:23):Swallowing (3:28):Sitting Up (4:13):Root Cause Theorizing (6:52): Minecraft (8:33):Stationary Cycling (9:30):Locking Wheelchair (9:50):Clinical Note (10:59):Heart Rate (12:14):DISTRACTION!!!
Myositis Journey E27: More Progress Updates :)
มุมมอง 4297 หลายเดือนก่อน
Some more updates on recent improvements. Looks like this is going to be a more regular series as things are slowly moving in the right direction! :) (0:00): Intro (0:19): Wheelchair self-locking (1:30): Car Seatbelts, etc (2:00): Power locks and Door Handle (2:56): Dental Cleaning (6:02): Rolling in Bed (8:51): Attempts to Stand (Safely) (10:12): Happy Mother's Day!
Myositis Journey E26: Updates and Photo Software Preview
มุมมอง 3919 หลายเดือนก่อน
More progress updates, and a sneak peek at the Photo Software I'm working on! (0:00): Intro (0:43): Recent Improvements (4:46): Photo Software Sneak Peek (10:28): Conclusion and request for feedback/ideas
Myositis Journey E25: 6 months later, Rituximab refresh
มุมมอง 72811 หลายเดือนก่อน
All the updates in the last 5-6 months, some lows, some less lows, and a positive outlook! It's a bit noisy in the background, the kids had friends over, but no shaky camera this time :) (0:00): Intro (0:58):Decline in September (1:52):Difficult Tasks (2:48):Ask for IVIG in September (3:42):Cough Improvement from Rituximab (5:00):Rescue IVIG Results (5:48):Too Much Pee (6:55):Strength Improveme...
Myositis Journey E24: Rituximab Updates, ER...
มุมมอง 726ปีที่แล้ว
Excuse the 'Blair Witch' camera work. I think tripods next time... Updates related to Rituximab infusions as well as an unplanned visit to the ER... (0:00): Intro (0:26): Rituximab Experience (1:36): Rituximab 2nd (2:14): Ankle Pain... (2:56): ER visit (5:50): Rituximab 3rd (6:12): Hives (6:43): Rituximab 4th, HIVES (7:53): Updates/Improvements
Myositis Journey E22: Stagnated? Should we change treatments?
มุมมอง 624ปีที่แล้ว
Haven't really made much progress in 10 months of treatment. Some updates and ideas/hopes for maybe a change soon? Asking for prayers (0:00): Intro (0:29): Lung tests and Dr visit (2:03): Access/Pimple (3:21): Hinkedy Pinked Answer (3:43): Cautionary Tale - Hand Sanitizer (5:44): Thankful for so many good friends (6:25): Please pray for me. Mar 29 seeing doctor.
Myositis Journey E21: Medical Updates, Diet & Exercise!
มุมมอง 423ปีที่แล้ว
Just an update on how things are going the last month . Tried a new diet, picking up some new exercises, and some overall medical updates. (0:00):Intro (0:23):IVIG updates (1:05):Avoid clotting (3:00):PT/OT updates (4:27):Carnivore Diet (6:55):Hello Kitty & Friends (7:44):Hand Cycle Exercise (10:08):Hinkedy Pinkedy
Myositis Journey E20: Steady as She Goes
มุมมอง 4682 ปีที่แล้ว
Updates from the Lung and G.I. Specialist visits. Updates on coughing and of course the answer to the hinkedy pinkedy! (0:00): Intro (0:18):Hurricane Update (Florida Man) (0:48): Hinkedy Pinkedy (1:08):Lung Specialist (2:19): GI Specialist (4:04):Coughing Subsiding?! (4:49):Sitting Endurance Increasing? (5:38):Wardrobe Malfunction
Myositis Journey E19: Steady Progress and Medical Stuff
มุมมอง 6352 ปีที่แล้ว
Some updates as we continue to see minor improvements. Some of the latest medical tests/procedures I've been doing. (0:00): Intro (0:31): Singing and Blowing Exercise (1:49):Quad Exercises (2:49):Hinkedy Pinkedy (3:49):Outdoor Excursion, ELECTION! (5:00): Lump and Mammogram (8:08): Lung Doctor Visit
Myositis Journey E18: Turning the corner?
มุมมอง 8332 ปีที่แล้ว
My sisters are in town! Much thanks to them for helping me make this video! In this episode we go over safety equipment, comfort equipment, swallowing, miscellaneous injuries and medical updates. (0:00): Intro updates (1:25): Bald spot? (3:16): 2nd opinion from Mayo (4:22): Neck demo (4:34): Infusion Port (5:36): Hink Pink, etc (6:51): Speech Therapy (9:02): Swallow Study (9:57): Seat Cushion (...
Myositis Journey E17: IVIG Re-start & Updates
มุมมอง 6132 ปีที่แล้ว
IVIG has been restarted. Still progressively getting weaker in some areas, maybe stronger in others Some questions about techniques for physical tasks (0:00):Intro (0:24):Poopy appears (0:52):Vein non-cooperation (2:45):Strength Updates (4:53):How to get out of chairs? (5:39):How to get out of bed? (6:54):How to climb stairs? (7:40):EZ Step demo (9:17):Stand up? Conclusion
Myositis Journey E16: Regression :(
มุมมอง 8032 ปีที่แล้ว
A quick sharing of the current status. Restarting IVIG after 5.5 months off. (0:00): Intro (0:34): Sandhill Cranes UPDATE! (1:52): Stopping IVIG. results. (4:01): The fall ... new tech! (5:01): New culinary unveiling! (5:42): Demo of rising from a seated position
Musical Interlude 03: 2021 Christmas Interlu-ganza
มุมมอง 1863 ปีที่แล้ว
Christmas Special. No medical info in this episode :) Not exactly the greatest video filming/editing, but the music is pretty okay... :)
Myositis Journey E15: Improvement + Bubble Tea
มุมมอง 2583 ปีที่แล้ว
Myositis Journey E15: Improvement Bubble Tea
Myositis Journey E13: Updates, Strength, Boots!
มุมมอง 3133 ปีที่แล้ว
Myositis Journey E13: Updates, Strength, Boots!
Myositis Journey E12: Medical Updates, Allergies...
มุมมอง 3663 ปีที่แล้ว
Myositis Journey E12: Medical Updates, Allergies...
Myositis Journey E11: Exercise/Medical Updates, and "SQUIRREL!!!"
มุมมอง 3663 ปีที่แล้ว
Myositis Journey E11: Exercise/Medical Updates, and "SQUIRREL!!!"
Myositis Journey E10: Exercise & PC & Crypto!
มุมมอง 2553 ปีที่แล้ว
Myositis Journey E10: Exercise & PC & Crypto!
Myositis Journey E09: Updates and Biopsy!
มุมมอง 5023 ปีที่แล้ว
Myositis Journey E09: Updates and Biopsy!
RTX 3080 Founders Edition Teardown and Corsair Hydro X Water Block Installation
มุมมอง 1.7K3 ปีที่แล้ว
RTX 3080 Founders Edition Teardown and Corsair Hydro X Water Block Installation
Musical Interlude 02: Christmas Music!!!
มุมมอง 4614 ปีที่แล้ว
Musical Interlude 02: Christmas Music!!!
Myositis Journey E08: Road Trip w/ Philosophy
มุมมอง 2344 ปีที่แล้ว
Myositis Journey E08: Road Trip w/ Philosophy
Myositis Journey E07: Health Updates and another CAR episode!
มุมมอง 2284 ปีที่แล้ว
Myositis Journey E07: Health Updates and another CAR episode!
Musical Interlude 01 (not a myositis episode)
มุมมอง 2804 ปีที่แล้ว
Musical Interlude 01 (not a myositis episode)
Myositis Journey E06: updates and medical plan info
มุมมอง 2954 ปีที่แล้ว
Myositis Journey E06: updates and medical plan info
Myositis Journey E05: IVIG! and myositis haircuts!
มุมมอง 4334 ปีที่แล้ว
Myositis Journey E05: IVIG! and myositis haircuts!
Lawn prawn?
Good guess! :)
How are you?!? You are look great.
Slowly improving. Which is way better than not. :)
I’m learning a lot
I'm glad these videos are informative!
Thank you for putting these videos together!!!!
Thanks for the feedback! I'm glad the videos are helpful.
❤ so happy for ur improvement. Your story give me strengh. Tks Kevin
Thanks Kevin. God Bless
Thanks for keep sharing ❤
:)
Tks Kevin for update. Really appreciate it
Thank you!
Tks for update. GBu❤
Thank you for all your kind comments!
Thanks Kevin. Beautiful decoration ❤
My pray with you
We will pray for your son as well. I hope his treatments are going well.
😢 iam so sad to hear this. I will pray for you and for all people to be healthty
❤
Actually when i saw ur video It give me a lot of strength to face my Son dermatomyositis. Ur video full of humour. I can even laugh in this uncertainty disease. Tks ❤
Thank you for your kind notes. I'm glad my sharing can be of use whether just for knowledge, and sometimes for humor/fun :)
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Hai. Iam Erni from Indonesia My son 10 years old got juvenille dermatomyositis..iam glad i found ur youtube..and ur update help me alot. Next time i will leave heart only just to let u know how i so thankfull with ur effort to keep updating ur myositis..God Bless u and ur family ❤
I hope your son has good doctors and good medicine so he can deal with this condition well!
thank again for ur medication update
❤
Tks for sharing ur journey..i will watch alll of your video❤ God bless you ❤
Thank you so much!
Hai.i just subcribe ur channel..please keep update. Tks alot for sharing. Healthy always..
Thanks for the note!
Glad to see you doing better.
Thank you! I too and glad :)
This is great news. Keeping you and the family in our prayers. - love your fellow myositis friends on the other side of FL
Thanks for the kind words. Do you have myositis too or one of your family members?
Great news Kevin!
Things are on the right track!
That's nice. Very good. I think you are doing well. All the best.
Thank you!
“Don’t forget to have a protein shake at the end of the therapy; it will help.”
thanks for the suggestion. I ordered some to take on therapy days!
Single-cell analysis of refractory anti-SRP necrotizing myopathy treated with anti-BCMA CAR-T cell therapy Edited by Lawrence Steinman, Stanford University, Stanford, CA; received September 19, 2023; accepted December 26, 2023 Evaluate the Safety & Efficacy of CABA-201 in Subjects with Active Idiopathic Inflammatory Myopathy UCI Specialty Area: Rheumatology Principal Investigator: Tahseen Mozaffar Official Title: A Phase 1/2, Open-Label Study to Evaluate the Safety and Efficacy of Autologous CD19-specific Chimeric Antigen Receptor T cells (CABA-201) in Subjects with Active Idiopathic Inflammatory Myopathy A Study On: Idiopathic Inflammatory Myopathies Myositis
You really are looking a lot improved. Add oil!
I try I try. Stacy would like to me to not gain much more weight before getting stronger ;)
Hello, how are you now? This is Wayne from Dublin, Ireland. Diagnosed with statin induced HMGCR POSITIVE NECROTIZING MYOPATHY. Having proximal weakness on my extremities. Can't stand and walk. Limited range of motion on my arms. Has rashes to my chest and back. Started with Rituximab infusion last 15th and 30th September 2024. To have dose again on March 2025. Also to receive IV Ig again this week. Still here in a rehab hospital for prolonged physiotherapy. Happy for you that your condition subsided and now improved a lot. Praying that my weakness resolves so that I can at least stand up and walk again. God bless you always Bro.
Hi Wayne. Yes your situation sounds very much like mine. I hope these treatments work for you like they have for me so far. Another video is posting soon, more progress to report!
@wanderingmusic38 will keep an eye on your postings. It motivates me to stay positive.
Hi Sir, thank you & greatly appreciate the sharing your experiences. I'm just being diagnosed with netrotizing myopathy & my world turn upside down, praying for your healing too.
I hope you find good treatments quickly! I'm finally seeing positive results, it's just so slow.
So sorry. You sound like my story, I’m very weak, I have polymyositis for 16 years. Sue
16 years! You're a long term fighter! He's looking to better days ahead! I try to keep the positive attitude, I guess I don't really know any other way.
You’re looking healthy and happier. I pray for your continued healthy recovery!
Thank you! Prayers are being answered!
Is it workinh good sir
So far so good :)
Am living with myositis Ossificans
Hearts and prayers! Great to see your progress!
Thanks John. I still can't believe I ran into you at Disney Springs that one time! Hope things are well with you!
Good news!
So far so good :)
LOL at the minecraft hunger.............................. but thanks for the update that you're doing better.
Thanks for the comment! I don't even know how to cook cod in the game. It's amazing what they have learned from sporadic play time at friends' homes.
Glad you're doing better. When I was growing up, my parents would tell me to stop gaming cause I was wasting time. Now my kids are growing up and we're playing games to bond. Minecraft was fun when they're young. These days were playing Overcooked 2 and other face-paced co-op games.
Love Overcooked 2. We recently started trying to get 4 stars in the levels haha.
I think you're dropping goldfish because you're distracted by your tian mi mi. I find it interesting that your food of choice throughout this episode is fish. I would have done the same as your son in that situation.
If only he would quickly prepare dinner in the real world, that would be something :)
Thank you for sharing your journey to diagnosis, Kevin! Be well 🥰
Thank you! Working hard at getting better am I!
Great update! I'm so glad to see things are improving!
Thank you!
Hi, your channel just popped up on my home page, I guess that’s what it’s called. I was originally diagnosed, back in 2002, with Polymyositis by a local dr but Mayo said IBM. Then NIH said PM and Dr Ottis at University of Pittsburgh said IBM and a skin biopsy showed DM. Now it’s thought I have all 3. I’ve done 8 study meds along with the usual IVIG, methotrexate and other useless meds. Prednisone for over 20 years now. I’m 57 now and in a wheelchair. I fell and shattered my femur 3 years ago and haven’t walked since. I can’t roll a wheelchair but I have a Jazzy air. I haven’t given up standing yet. I can stand in the pool. My hamstrings are strong enough but quads and hip flexors are a joke. Trying to follow a study done a few years ago that says I need to eat 1gm of protein per 1 kilo of body weight, vitamin D and testosterone where it should be and creatine 10gm per day. 100 gm of Protein is tough. Plus some exercise, of course. Supposedly this averaged a 38% increase in muscle strength 🤷🏼♂️. It’s worth a shot. I’ll keep watching, take care.
Wow. Thanks for sharing! 20 years is a long time. With necrotizing myositis the decline was extremely rapid for me, but for the last 6 months I've had steady improvement. (Albeit extremely slow). Here is hoping we both get back to walking in the near future! 🙏
Amen to that brother. I was very athletic with bigger muscles so it’s taken a while
Kevin you're looking good man!
I try I try :)
Thx for the update.
Any time!
Just dropping a comment to say Hi and hope you had a chance to celebrate mother's day.
Thanks. Our celebration was mostly a nap for Mom :). Been so crazy lately. Hope your family had a good Mother's Day!
Been watching your videos, as I was jus given the news I have this thing. Thank you for all of them… they’re insightful and educational but also funny and refreshing. Surprised at the very very little content is out there about this, but I’m glad I found your channel 😊
Thank you so much for your kind words. I hope your doctors find the right combination of meds for you and your insurance doesn't give you hassles. One thing I've learned through all this is that we really do have to be our own advocates. Nobody cares more about you than you. Good luck to you
May God heal you and grant you health. If you never mind tell me how old was you when you got myositis
Hi there. thank you for your kind message. I was 43 i think? Somewhere in early 40's anyway.
Thank you for sharing. I wish you love and strength in your journey
Thank you so much!
Maybe you should consider some physio to get moving again, since you have this improvement. It helped me to accelerate my recovery. Some great resources online too!