[TMIC] JUDE AND THE LIST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HI EVERYONE, I HAVE BEEN ON THE LIST MANY YEARS.IN OCTOBER I WILL HAVE HAD TM FOR 18 YEARS. I AM ONE OF THE LUCKY ONES I CAN WALK, DRIVE NOW SINCE MY SURGERY I USE A CANE AND A WALKER. THIS IS A WONDERFUL GROUP OF PEOPLE .I HEARD WE HAVE SOME NEWBIES. I WANT TO WELCOME THEM WITH OPEN ARMS. TM IS A VERY COMPLEX DISEASE, I KNOW THAT FIRST HAND. I SUBSCRIBED TODAY BECAUSE OF THE NEWBIES AND OUR PRECIOUS JUDE. I WILL UNSUBSCRIBE AFTER THIS LETTER, I HAVE ILLNESS IN THE FAMILY A WEDDING I AM PREPARING TO GO TO DALLAS FOR NEXT MONTH.ITS MY NIECE. I SPOKE TO JUDE YESTERDAY.SHE SEEMED OK WAS IN PAIN BUT NEW WHAT WAS GOING ON.JUDE IS A EXCEPTIONAL LADY. VERY WISE AND VERY SWEET. I LOVE HER LIKE A SISTER. I CALL HER EVERYDAY, IF I CAN GET HER. TIMES SHE IS NAPPING ARE IN JUST TO MUCH PAIN TO SPEAK. WE LAUGH ,JOKE AND WE PLAY A GAME. SHE SAYS I ACT LIKE SCARLET AND I SAY HER MEL GONE WITH THE WIND ONE OF MY FAVORITE MOVIES. REALLY I THINK SHE IS STRONGER THAN I AM.SHE WOULD DO ANYTHING FOR THIS LIST AND FRIENDS NOT ON THE LIST. SHE HAS NO FAMILY ONLY HER HUSBAND DAVE AND HER MINISTER. PATTI LIVES CLOSE BY HER. I WANT TO THANK YOU PATTI FOR GOING TO THE HOSPITAL ALL THE TIMES SHE WAS IN WAS WAY TO MANY TIMES .I LIVE OUTSIDE OF NEW ORLEANS WAY TO FAR FOR ME TO HELP OUR PRECIOUS JUDE. THIS IS HER LIFELINE .I ALSO WANTED TO THANK MR. LUBIN FOR THIS WONDERFUL SITE. I HAVE MADE SO MANY FRIENDS AND I KNOW I CAN COUNT ON THEM AS THEY CAN ME. HE IS A WONDERFUL MAN, WHO NOW CANNOT LEAVE HIS HOME OFTEN. I HAVE NEVER HAD THE PLEASURE OF MEETING HIM BUT I AM SO GREATFUL FOR WHAT HE DID FOR US ALL WHO HAVE TM. I HOPE YOUR DOING OK MR. LUBIN, FROM THE BOTTOM OF MY HEART I PRAY FOR YOU AND THE LIST EVEN THE PEOPLE I DO NOT KNOW. MY SWEET JUDE, NO ONE HAS FORGOTTEN YOU, ITS JUST THE OPPOSITE.YOU ARE SO LOVED AND CARED FOR BY EVERYONE WHO KNOWS YOU AND EVEN A NEWBIE HER NAME I THINK IS JANET, HOPE I GOT THAT RIGHT, SENT HER BEST WISHES TO YOU. YES THERE ARE A FEW OTHER SITES BUT THIS ONE IS THE BEST IN MY OPINION. I WENT TO ONE OF THE SITES IT WAS SLOW, THIS IS MY LIFELINE IN MANY WAYS TOO AS OTHERS.THE LIST I WAS TOLD IS A BIT SLOW NOW BUT ITS SPRING, WE ALL HAVE SPRING FEVER, GETTING OUT DOING THINGS, EXCEPT MY FRIENDS LIKE YOU WHO CANNOT. THATS THE GREAT PART OF THE LIST I STILL E-MAIL MY FRIENDS REGULARLY THEY DO THE SAME.WE ALSO TALK ON THE PHONE, THATS HOW I FOUND OUT ABOUT OUR JUDE BEING SO DOWN. I ALWAYS WHEN ON THE LIST WRITE A QUOTE FOR THE DAY ARE A POEM. I WOULD LOVE TO HEAR FROM ANY NEWBIE WHO WOULD LIKE TO E-MAIL ME. I WILL POP IN AND OUT UNTIL AFTER THE BEGINNING OF APRIL, THEN I WILL BE BACK ON THE LIST AGAIN. JUDE MY ANGEL YOU ARE SO SPECIAL, AND YOU ARE ALWAYS THOUGHT ABOUT. I KNOW YOU GET CARDS GIFTS. I KNOW YOU ARE JUST HAPPY GETTING A CARD ARE E-MAIL FIDDLE DE DE WOE IS ME. LOL!!! I KNOW YOUR SURGERY WILL BE FINE. YOU KNOW EVERYTHING YOU NEED TO KNOW ABOUT IT. IF YOU FEEL SCARED AND WOULD LIKE TO BE STRONGER TELL YOUR DOCTORS HUN.THEY CAN RESCHEDULE IT, THATS WHAT I WOULD DO, BUT WE ARE ALL DIFFERENT. TO THE NEWBIES I ALWAYS ANSWER YOUR E-MAILS PERSONALLY AND TO THE LIST.IF YOU TRLL ME SOMETHING THAT YOU DO NOT WANT THE WHOLE LIST TO KNOW MY LIPS ARE SEALED AS ARE THE OTHER MEMBERS. I SIGN OFF TIAD, JUDE AND I CAME TO USE THAT ONE!!! AS SCARLET WOULD SAY TOMORROW IS ANOTHER DAY!! GOD BLESS US ALL TIAD PAM **Feeling the pinch at the grocery store? Make dinner for $10 or less. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001)
[TMIC] For Jude
For Jude
Re: [TMIC] Judes Update
Janice, I got goose-ubmps reading your note to Jude. This is exactly what the list is about and why we are so glad to have new members who can join in inspiring each other thru the hard times of our TM journeys. Patti - Michigan Janice jan...@centurytel.net wrote: Jude, I am new to this bunch of great people. Have had TM for 2 years.When I joined this webside (about 2 weeks ago), it seemed that on a daily basis people were asking each other if there was any news about Jude.I could tell there was a lot of concern and love from all your friends on the list. Now, I too, am wishing you the very best of luck and may God bless you. Janice - Original Message - From: alle...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, March 17, 2009 3:58 PM Subject: [TMIC] Judes Update Hello Dear Ones, Why is there no mail in my mailbox? Have you all gone to that Face place? Are you at Yahoo? Can't I count on anyone any more? All I did was go into the hospital for a few days and when I get back, everyone seems to be gone. The List is like a ghost town... I would like to thank those of you who have taken the time and effort to send me lovely cards and beautiful notes. I will cherish them for a long time. The hospital is a lonely place and a card with well wishes goes a long way towards making the time pass a bit faster. Also, thank you to those of you who have called me to wish me well and to let me know I have been missed. You have no idea what you people mean to me. I hate naming names because I am afraid of leaving someone out, my memory is getting worse by the hour. So, I am not going to do that. You know who you are and how much I appreciate your signs of friendship...you keep me able to look at life as a glass half full, if you know what I mean. As some of you know, I have no family except for my wonderful husband, Dave. We moved miles away from our home town because Dave wanted property and shortly after I was stricken with TM...no chance to make friends with anyone. Like all of us, I was grasping at straws, trying to find something to give me a reason to live, something to hold on to. Finding this site, thanks to Jim Lubin, became my lifeline. You people became my family and I had somewhere to go where people understood what I was going through, how my life had done a 360' and in a heartbeat I didn't know who I was, where I fit in, if I even was worthwhile to life itself. Each and every one of you has given me a reason to continue living. You make me think, you make me lol, you make me feel warm and comforted when I'm in pity party mode. You graciously allow me to make mistakes and don't hold it against me, and I know that I can count on you to hold me up when I get too tired to tread water any longer. This Friday I go in for flap surgery on the ulcers on my behind. The plastic surgeon is not certain where he is going to find extra tissue to create the flap so the outcome is up in the air. He is going to shave the bony protubences of the ischeal tuberosities way down so that there will be less of a chance for them to penetrate the skin in the future. The research I have done online has not been optimistic. It sounds like in many cases the sites open back up in a relatively short period of time. And, I did not realize that complications due to pressure sores is the number one cause of death in paraplegics. In the future, my job will be to force myself to eat lots of protein and learn to move around when I'm sitting to allow freedom of blood flow and maintain oxygenation in the blood. No matter how hard I am being hugged around my abdomen, I have to find a way to eat. I don't know how to do that though. Dave and I are drinking those new fruit flavored protein waters which are supposed to be an excellent source of the good stuff. And they taste great, not all thick and gooey like Ensure and those kinds of drinks. I am overtired and cannot go to sleep. Things keep rolling around in my head...like what has happened to the List. As hard as Jim Lubin works, even though he is a quadriplegic, to keep this thing going and as much gumption it must have taken him to even begin a web site for us forsaken TM'ers, is absolutely amazing and I for one, will not jump ship for some site where supposedly the grass is greener. Maybe I will be here all by myself, though I know better, but that's ok because through you, my friends and family, I have learned to value myself again, know how to reach out for help when I need it, and I even understand how being a paraplegic has made me a better person, put things in the right perspective, humbled me just a bit. So, to those of you who make me laugh and have given life and hope to one lost old woman, thank you again. Hoping and
Re: [TMIC] Judes Update
I AM IN SPLENDORA TX. I HAD TM IN APRIL 1998. I'VE HAD 3 RE OCCURANCES SINCE THEN. FOR ME I THINK STRESS BRINGS IT ON. I AM 62 SOON TO BE 63 ON THE 26TH. I WAS AFFECTED AT T6 DOWN, DID REHAB AND MY FUNCTION IS ALMOST NORMAL. STILL NUMBNESS FROM BREAST DOWN AND PAIN AND BURNING IN MY SPINE. NEURONTIN AND BACLOFEN SEEM TO HELP. I WILL BE PRAYING FOR YOU JUDE. YOU ARE TRULY AN INSPIRATION TO ALL OF US. I'M TYPING THROUGH THE TEARS, JUST SEEING A POST FROM YOU LIGHTENS MY DAY. THANK YOU PATTI FOR BEING THERE FOR HER. LOVE TO ALL JANE **Feeling the pinch at the grocery store? Make dinner for $10 or less. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood0001)
Re: [TMIC] 9 years
I hope that you don't mind my butting in, but I am Janice and fairly new to this website and a 62-year old veteran of TM.Is it your son that got hit with TM? I am so very sorry and will immediately add him to my prayers to St. Jude.I can not imagine the pain all 3 of you have been through. There will be a special place in heaven for all of you. I hope you have a wonderful time in Cabo and let us know how much fun you had in your get-a-way when you return. - Original Message - From: parkersw...@aol.com To: tmic-list@eskimo.com Sent: Wednesday, March 18, 2009 4:59 PM Subject: [TMIC] 9 years Terry had his 9 year unbirthday yesterday... Yep, St. Patty's Day. What can I say? Do you celebrate? Do you commensurate? Do you have a pity party? We feel fortunate overall that he has had much improvement with the exception of those darn old bones that are full of osteonecrosis, (prednisone induced). He will have his other shoulder replaced next month and we are hopeful it will last him a very long time. The first one is not holding up so well so they will try a different procedure this time. It's always something, isn't it? Those you of that know us, know that we love to travel and that the wheelchair is no longer an obstacle. So, Terry decided that we are going to Cabo on Saturday for 6 days to celebrate our 18th anniversary. I came home from my own pity party Monday, and he came to the conclusion that a trip will do us both a world of good! What a great idea, huh? I love this man! I always keep in mind this fabulous friend of ours, Jude, who always sees the glass as half full. She is my hero and I will try to live my life with her attitude! xoxo Sandy -- Great Deals on Dell 15 Laptops - Starting at $479
[TMIC] Alton's story
Alton Ryder's TM in a nutshell Alton Ryder, age 63, retired engineer/physicist. Transverse Myelitis since 7/24/97, slowly healing. Cause unknown, possibly a blocked artery between T9, T10. All the nasty illnesses have been ruled out; I'm very lucky! Initial symptom was a feeling of pressure in the right kidney after dinner [500 miles from home.] Ten minutes later my legs were on fire; another fifteen minutes and I was paraplegic with severe back pain. Three months in acute physical therapy [St Joseph's in Nashua, New Hampshire --- God bless them!] My memory is vague, but I think I was barely able to wiggle my left foot when I came home. Three to four months of physical therapy at home and now on outpatient PT. At the end of February (seven months) I was in a wheelchair, using a slide board for transfers. The right leg was moving but without utility. I could use a walker to go about eight feet, twice a day. At nine months I could walk slowly for fifteen minutes with both legs with arm support, two steps without. I couldn’t manage stairs. Now at over ten months I have started to use forearm crutches and to do stairs. I think I will be able to safely drive a stick shift car soon. Not as safely as before, perhaps, but adequately. I would be functionally descriptive if I were to carry a large yellow sign saying, Student Driver. The safety level is probably the same. [I think I am writing this for an audience of fellow TM people. If that is not the case, I'm going to be very embarrassed.] It seems that most of the motor functions will recover, although the right leg wants to be bow-legged, club footed, and hammer-toed. It also wants to be to the left of my left leg. A real beauty, I am.It also wants 3/18/09 8:05 PM Transverse Myelitis Internet Club List: Alton Ryder's TM in a nutshell Sensory functions are really screwed up. For the first few months, all contact was perceived as pain, “like stepping into a blackberry patch.” Then slowly a return to normality in some areas, nada in others. I have enough sense of pressure in my feet to maintain balance, and I feel pain when the toes of my right foot get crunched, as they often do. Like many others with TM, my lower thighs often feel as if I had tight tourniquets there. But only when I am sitting. Basic bodily functions came back under control after about three to five months. Lessons learned: 1. My wonderful wife of 41 years is a stalwart supporter. This has been harder on her than on me. 2. I live in a supportive community. 3. The able-bodied don't understand obstacles to handicap mobility. 4. By the time the control nerves heal, the muscles are gone. Therapy now means working hard to rebuild muscles. I couldn't find this in the archives, so here the rest is recreated. A year after the onset I was walking on the treadmill for 30 minutes at a time, but it was becoming painful. Spasticity was twisting the right foot such that I was walking on the outside edge, not the sole. Botox had no effect. Surgery corrected it and some other, minor, problems. The large tendon connected to the muscle causing most of the problem was cut, passed through from back to front between the leg bones, and reconnected next to the big toe. Henceforth spasticity would pull the foot flat. A toe tendons were cut. The little toe, having been walked on painfully for months, was removed. The remaining problem was a contracture tilting the calcaneus (heel bone) outward. It was a serious mistake to not have fixed it at the same time. I now could again walk with crutches, albeit with an AFO bracing the ankle. An accident nearly severed the left Achilles tendon, and I was back in the wheelchair. Inattention to what I was doing to myself kept me there. Alton
Re: [TMIC] Pain
Hi Janice and a big warm welcome to the group. My name is Linda and I have had TM for 7 years now. My lesions are at C4, 5 6 - cervical area. Mine started with numbness and tingling in my toes and just worked its way up to my chest. I had no feeling, but I could still walk - sort of. Once the numbness went away this wonderful nerve pain started. Mine is in my legs and back also, but I do not use a spinal cord stimulator. I know some people do. I think Trudy may have answered this already but most people take Lyrica or Neurontin for the nerve pain and Cymbalta can help as well. Are you on any medication?? Your doctor might want to start you on something for that awful arthritis pain. Do you experience the extreme fatigue that most of us deal with? Gee, I have more questions than you! Sorry - just trying to get to know you better. Are you having any trouble sleeping through the night? My neuro just recently put me on Zanaflex to help with sleep as well as pain. It does seem to be helping some. (as I sit at my computer burning!!) Time to go to bed I guess. This is one of those days where I have done more than my body wanted me to do and now the burning is not being kind. I'm so glad you've joined our group, and I'm sorry that I asked more questions than gave answers. This is still so new for you. There will be many questions that come up, this is very normal. Please ask them. There is always somebody here to help. Linda in Eagle, ID (but born raised in Seattle) Message - From: Janicemailto:jan...@centurytel.net To: transverse myelitismailto:tmic-list@eskimo.com Sent: Tuesday, March 17, 2009 10:07 AM Subject: [TMIC] Pain I hate to keep bugging you all with questions, so I hope you don't mind and will take a minute to answer. Several of you have talked about the pain that you have, apparantly even after several years of TM. I am assuming we are all talking about nerve pain - which I have in my legs and back and use a spinal cord stimulator for.Is this correct or is there something else out there causing this? Also, would you please give me the name of the medicine you take for pain? I have another appointment with my neuro on April 1 and would like a little backup as to what else is out there that is working for others. My stimulator is working pretty well, but the TM is really aggravating the arthrtis that I have in the lumbar region. That is the only question I have for now, but I am sure I will have more later - if you don't mind. Janice
