Joe's Journey - Victory over Transverse Myelitis
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- เผยแพร่เมื่อ 6 ก.ย. 2024
- This video is a compilation of videos and photos spanning the beginning of some significant struggles for Joe Jasmer through some great victories. You can interact with Joe on Facebook at / joestmjourney
Hello, i got a TM two years ago . I stayed nine months in a rééducation center ,and today i can walk and drive bicycle. I don't recover everything.some transit problems and pain. but whith lot of courage, and love from my family and friends now i am ok . Keep go on✊
I am suffering from transverse militates and private therapy is expensive I really want to get better as I've had it since 2014 at the age of 29 yrs old and I'm 35 now I was worse than him but can walk 5 to 10 cm my left hand is closed I can't pull my self from the floor as I have spinal cord injury and inflammation on my brain going down my back if have to have a scooter to take me about I also have some1 2 take care of me my partner he does he been with me b4 I got sick and other things I won't go into about my condition but I'm grateful that I can do a little thing which in 2014 I was really bad and I thank God he has been my strength he got me through a lot and my partner and dad and my few friends & some family grateful to them as well ❤ thats my story are condition is rare but we are here #tmsuvivour #iloveGod
JOE !! I woke up in a hotel room in August of 1985. My back and buttocks felt like someone was stabbing me and my left leg was extremely swollen. I was in North Carolina working and realized I needed to get home to Charleston, WV ASAP.
The pain increased daily as I lay on the couch and even a sheet touching my skin sent me into screaming pain.
While visiting an Infectious Disease Specialist both of my legs gave out and I fell to the asphalt.
I was 38. Married with 2 young children.
I’m 73 now. STILL in excruciating back pain but under semi control with a morphine pump in my abdomen and stented. to my spine.
I have no bowel function and compromised bladder control.
Years of Physical Therapy. Prescription wheelchairs. Chair lifts. Bathrooms altered to accommodate my disability. Etc., etc.
Too much to comment here but wanted to tell you that you can overcome TM. They will never “cure” you but your life will go on.
Best of luck Joe !
May God continue to heal you and may he bless the wonderful friends you have. I hate that the insurance company left you in the dark. My husband was just diagnose with this on 12-16-16.
Keep going!Same happened to me 6 years later the back pain is going left leg getting better right leg still in horrible pain from the inside and no hot or cold.You are doing great .we are doing great!we can walk!and gonna get better xxlots of love Anne xx
The pain is far worse than the paralysis ! I’m going on 36 years with TM.
Hello Joe. I was diagnosed almost 2 years ago. It started with numbness while I was backpacking in Alberta. Even though I am an active senior, runner and hiker, I struggle with the fact that I cannot enjoy my life as before, but I have had to move on. Stay positive as you are and exercise daily. Yoga has helped me a lot and once I am more mobile, I will try Tai Chi for balance.
Bless you and your family and friends. All the best!
Same thing happened to me 12/23/18. ER docs said it was as drug abuse ( I’m a trucker and don’t drink or party ever ) or conversion ( separation from reality ) they didn’t have a clue. I’ve regained some past function but still have pain and weaknesses. If the myelin reforms, it grows back 1mm per month. I’m 6’2” and this went from my ear down. Lots of things to grow back. I wish him well on his recovery.
Gosh same here. I was not treated well at all initially ,cruelly even as I think health care people thought I was faking. Then it was a ‘functional disorder’ finally was diagnosed but too late so have lots of nerve damage. Life changed for ever. How are you doing now? I still have never met anyone else with TM. No support from anyone as no understanding of the impact from those around including medical personnel. But I am a fighter
My bladder and rectum are working better just this last month, ie, I don’t wet my self and poop more normally. My legs quit trying to run away at night and cramping is now a rarer thing. This last week I regained more normal sensations in rt leg mostly. Left was always the stronger over left as myelitis symptoms were mostly rt sided. This came after idiopathic pain in toes and ankles for three days. Starting to have morning wood again too. So, progress. I bought new boots as my sneakers failed this week. Walking in taller heels and heavier foot wear is more difficult. I still am unbalanced and warble. I’d like to dance again but we will see. I don’t dare run yet and I have 40% of the strength I once had. Can’t throw a ball or punch. Putting on shoes is difficult and falling is once a month now, not daily or weekly.
In my search for information, I found MRI imaging of someone in the beginning of acute onset. T6 to L1 was lit up brightly. As the the tube holding Csf runs from tail to top of brain. My thought was the region inflamed is happening because the what ever has a specific gravity that floats those antagonistic particles in that region. I think proper treatment at onset is max doses of steroidal anti inflammatory meds and possibly a flush of CSF from C2 to the lumbar puncture sight. New tech baby. Like brake lines??! It is described and has been called polio like. Poliomyelitis
Hi, hope you are better.
Excuse me, can you tell how can the myelin reform?
Best regards.
How are you doing now Joe. I ended up paralysed in October 2016. I can walk but only with a 4 wheel Walker or two sticks for very short distances. Pain,fatigue,and bowel and bladder issues are daily struggles. Hope you are coping and living your best life. We can but try.
Hu,I'm from the Philippines and two years now suffered from this transverse myelitis
I'm very lucky, I also have tm but it only effects my right hand.
Its very scary to wake up one day and find things aren't working properly.
I hope you recover well and gain back all function.
Hey Joe.....I'm 41 and was diagnosed with tm the day after Thanksgiving. I am currently dealing with just about EVERYTHING that you are or went through. Especially with insurance and coverage here in Hawaii. Thank you for sharing your story. You are blessed as I am with a great support from friends and family. God bless.....
I'm a sufferer too and it's been 27years running. I lost all except my life
I was diagnosed with ADEM a year ago. I was fully paralyzed but now just my legs don't work.
You are the Best man , I am suffering tranfer mayletis but watching you I am inspired from you ... Thank you man Good always with you
This gives me hope. I'm suffering from myelitis. I can't walk my hand finger nerves feel like they are ripped apart from the muscles
Same thing happens to my friend one day he woke up after just having twins and he couldn't walk his legs were dragging then doctors did surgery on his spine really messed him up he just got into union making good money bought house and had twins now it's been 12 years he can barley walk without a walker .his hands lock up his legs are stiff .he is in hospital all the time .shit sucks
Just happened to me Dec 27 2017 have slight movement in one leg slight twitch in the other had steroid treatment then plasma exchange seems like pretty common. You all are an inspiration the videos sure help thanks
Lavel sir
its very good therapy
Great job❤️
Brother my father is suffering from transverse myelitis since Feb 2018, we consulted best of Neurosurgeons in India but everyone refused to do operation. We also consulted 3 neurologists they gave steroid therapy but no improvement is there. One neurologist suspected tubercular myelitis and gave antitubercular medicines, due to which my father's SGPT and SGOT soared above 400. So he stopped taking those medicines. Sir he is still catheterized and suffering from paraplagia. Will he recover? Please do reply. I am eagerly waiting. I will be obliged. What treatment should be given?
Hi... Your WhatsApp number pls.. I'm from Goa... Same case with my father too... How's your father now
In this TM disease initial treatment includes IVIG steroids and then oral steroids. After initial treatment next step is Physiotherapy. Regressive physical therapy in regular basis helps the body regain strength. And most importantly the patient needs to be really very optimistic towards life and living. This disease is a curse as a whole but we need to be positive to move forward.
Hi I am also a patient with transverse mylittes ten months before my lower body was completely paralysed now I can walk without cane but there r balance issues only thing which helped me is physiotherapy
I have heard that the drug Rituxan can be used also. Has anyone had experience with this drug for tm?
Whats it's recovery rate??
Hi. Im also suffering from TM. Is your sensation back?. 1and half years for me now. Homeopathy medicine and traditional aurveda helps me alot and recently im getting accupuncture treatment. Im from srilanka.
God bless you
Thank you for sharing your story. I was diagnosed 18 months ago and I'm still getting treatments but I haven't regained any movement. It looks like my movement is still a little bit better than yours cuz I can walk without a cane. But I think the time is coming
Have your condition improved are you walking
@@sunitrocks007 I have a unique journey, I've always been able to walk. My legs feel very tight and swollen but I can still walk
@@882center my legs are not swollen only tightness and weakness .
Balance is improving .
While waking in steps I need some support to go up and down. I have thigh joint pain if i give pressure
@@sunitrocks007 I have all that, maybe just not as bad as you. Still hasn't been fun
@@882center how long you are suffering
Hi Joe at present I'm in same condition and fight wid TM
I'm in the same place right now
Which treatment given to u ??
Hi .what is your current situation. pls let us know
Hi Joe, thank you for your inspirational vlog and coverage with Koin6 News, I feel for you, I also have TM. I was wondering if you live in Oregon? I was borne and raised in southern Oregon, I thought I was the only one there with TM, but now I live over in Europe because of marriage and superior health care coverage.
how many year you recvery time
hi joe nice to see u u did good job have u any bladder problem
VIJAY KODI I do. I have to be near a bathroom at all times because I can pee my pants if I cannot reach a restroom. I have no nerve function to be able to hold the urine.
Even I don't any control over bowel n bladder moment
Hi Vijay
Could you pls text me your contact as am suffering from TM since 1Yr. Need to talk to you. My contact +91 7899036044
@@chandrashekharbolla hello.. how is it going now???.
My father got the same 2 weeks before
It would be mice if u share
@@sajassaju5729 Still am in recovery phase and continuing Physiotherapy. Able to crawl now and able to walk with knee braces. Awaiting for knee movement.