[TMIC] Newly Diagnosed and Need Guidance
Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL
RE: [TMIC] Newly Diagnosed and Need Guidance
Hey Ruben, I, as most of us here, can empathise with your situation. It is very costly and the burden becomes unbearable. We've all been there. I'm sure someone on our list must be able to help you get the financial support that you need. The rest of us can give you the emotional support that you need. That's what we do here. You have hundreds of shoulders to cry on anytime you need to. With regards to your other queries I think we can all say that TM manifests itself in different ways and affects us all differently. My advice to you is to see someone about the depression and the anxiety. There are drugs out there that can help. We all have battled through the rough times, I myself was in a bit of a crisis recently and only with the help of my TM family I am managing to trudge on. I truely hope you find the help you need. Regards, Jeron From: rdtow...@southernco.com To: tmic-list@eskimo.com Date: Fri, 28 May 2010 06:16:09 -0500 Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] Newly Diagnosed and Need Guidance
Ruben, Many of the things you mentioned are things many of us have dealt with I'm not certain that anyone has mentioned them happening before tm, with the exception of the back pain. First, let me welcome you to our tm family. Any question you might have can be answered by someone.like snowflakes, no two of us are alike, thus none of us have a mirror tm experience, but someone will relate and can help. Let me address your depression: you've lost who you were and what you could once do and be.thus your depression. Many of us have been put on meds for depression...that's good, because it allows you to focus on what you need to do to get your 'new life' in order. I'd think that your emotional outbursts, anxiety, and paranoia go along with depression Next, most of us suffered with short term memory problems in the beginning..I did a lot of crossword puzzles to help me 'pull' the words out of my memory bank, or if I was writing to someone, and there was a word or phrase I wanted to use I'd sit and concentrate on what I was trying to say until it came to me and then I'd continue writing. If you haven't joined the Transvers Myelitis Assoc. you should. It's here to serve us and to help us learn. Joining is free and you'll get the Newsletter and a member- ship list. As for financial help, I'm unaware of that.I got Social Security Disabil- ity thus am on Medicare which covers much of my bills. I don't know how tm has affected you, so I don't have any idea how disabled you are. Like, are you paralyzed, unable to work, etc. You would have to look into that for yourself and there's a wonderful help for applying on the TMA website. I hope I've been of some help.remember, we're all in this together and you can come to us with any questions you have. janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, May 28, 2010 6:16:09 AM Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL
Re: [TMIC] Newly Diagnosed and Need Guidance
I've been following this list for several years, and I have no memory of such. Alton On May 28, 2010, at 7:16 AM, Towery, Ruben Dale wrote: I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM.
Re: [TMIC] Newly Diagnosed and Need GuidanceHydrc
Ruben - sorry to welcome you to our elite club. I reluctly joined the TM club on 1/5/2006 (T10 - T12) and then decided to become a fully fledged member by having a second attack by awakening on the 3 day home from the hospital, 1/30/206, which left me totally paralyzed from the neck down. With the 2nd attack, I had Plasma Exchange treatments - 7 in the hospital over 15 days and 7 as outpatient over 3 months. I can now walk and drive but most things that I do is limited to 15 minutes or so - therefore alot of things have to be planned such a laundry, dish washing and I try to do some house work but never can get a clean house. I live alone and collect a good SSD benefit but in doing so I am a couple of hundred dollars over the limit for additional help from the state and other benefits by making too much - between a rock and a hard place. I do however, realize that I'm much better off financially than a lot of others. I walk (like a drunken sailor) in the house by using furniture, walls, doors, counters, etc. I use a cane outside for no more than 20 - 30 feet, a rollator (4 wheels with a seat - HUGO brand) for longer distances up to 50+ feet or so otherwise, I need an electric scooter or wheelchair. I have lost about 50% of strengthen in my R arm/hand and left leg. I only have 30% of strength in L arm/hand and R leg. I lost most of my upper strength with the 2nd attack. Since then I have been dx'd with Sjogrens and SLE lupus - in other words, I have a lousy autoimmune system. I recommend that you see a rheumatologist. Most of us have found that our vit. D levels are low. Mine was less than 1/3 of the recommended levels. I now take 15,000+ units per day to keep my levels on the lower end of normal. Also, a lot of us have low vit. B12 levels. Also, because of the steriods that have been used to reduce the lesions, we have issues with bone density. I can't stand or walk at max for no more than 30 minutes or so and then I'm sweating, breathing heavy, and about to collapse. Most of my time is spent in my recliner or anti-gravity chair, or in bed. I never seem to be able to do everything physically that my minds thinks I can do. Life has made a 180 degree turn around. I use to do all my own yard work, even spreading 50lbs of fertilizer, top soil, decorative rocks, mulch, etc. Now lifting a gallon of milk seems heavier than any of those. After my first attack, I was like a 500 race driver in a manual wheelchair, whirling here there and everywhere - the PT therapist threatened to take my wheelchair away several times - it felt so good to be able to run after 2 weeks of being bed ridden. But after the 2nd attack, I could barely move the wheel chair before becoming exhausted. Fatigue is always there - some days just fixing a sandwich (2 slices of bread and a couple of pieces of meat - no condiments just throw some meat on the bread and put everything away) is exhausting - I've fallen asleep trying to eat. Even though I'm single (for 25+ years), a microwaved meal, fast food, etc. was only if I had worked a 14-16 hour day. Now, going to the Dr. or grocery shopping always requires 2 or 3 days to recover. Most of the problems you are experiencing are normal for TM'ers. I'm not sure what kind of help you need, please write and tell us more of your story or ways that you need help. That way we will know more of how to hwlp. Help for meds can usually be done with/through the manufactures patient assistance departments. For general info with help try these website http://www.disabilityhelpsite.com/ http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.4048063/k.BDDB/Home.htm For Depression and help with nerve pain, I take Cymbalta. Try these websites: http://www.cymbalta.com/index.jsp Lilly is good about help with meds so try - http://www.lilly.com/responsibility/servingpatients/programs/ Another website for help with meds- http://www.pparx.org/ Some other meds are: Tizanidine (Zanaflex) for muscle spasms; Hydroco/APAP 7.5-500 Tab for break-thru pain; Tramadol HCL 50mg for pain, it is a narcotic; Gabapentin is a genetic for Lyrica - Try http://www.lyrica.com/index.aspx?source=yahooHBX_PK=s_lyricaHBX_OU=51o=44962814|221361396|0 and Voltaren Gel for pain in shoulder, arms, elbows, hands and legs. I also use an Electric Muscle Stimulator (EMS) for pain especially in my lower back and left neck/shoulder. I did use a TENS which is constant muscle stimulation but I've found that they EMS is better because I can program off/on periods of muscle stimulation. The muscles/nerves seem to like several seconds between the electrical pulsing. The EMS also delivers the stimul I've found that heat helps so I have multiple heating devices - heating pads, seat back covers with massage heat (Homedic), back braces with removable gel pads that can be heated in the micro wave or
Re: [TMIC] TM
Hi Janice, I live in Garfild Hts Ohio, a suburb 7 minutes from Cleveland. There is a landfill about 2 miles from my house that they began excavating around 2003 and the smell from it was awful. My neighbor whose daughter was raised here and is about 10 years younger than me has MS...Hmmm, makes you wonder if that could be something. Rita Janice Nichols jan...@centurytel.net wrote: After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
[TMIC] forgot to say that I'm home
I'm sorry that I forgot to tell you all that I arrived safely home late on Friday, May 21st. We managed to put 7608 miles on our van and enjoyed practically the entire trip. It really was a great trip, and was almost without incident. With regard to health problems: I fared really well, other than a bout of pneumonia and a night in the hospital in Colorado. This sounds bad, but I have gotten pneumonia at home many times. It was worse getting it on the road, as it has taken me so much longer to recuperate than usual, so that's the worse part. It also made the last week and a half of our trip a bummer, without much fun. No gambling in Vegas since I couldn't handle the smoky casinos, but that probably saved me some money. We managed to see 2 shows though. I had about 7 days out of 46 of laying in bed, resting my back overall. Not too bad, but they were spread out. We managed to see family and friends that we hadn't seen in several years, did things that we didn't know existed, and went to states that we had planned on visiting, but didn't really know when we'd do it. All this because our god-daughter planned her wedding. So, right after this, I'm going to call her and thank her for planning her wedding and for us having the opportunity to push my inner thoughts into planning this wonderful trip. She really didn't have any awareness of this when she planned it, but my mind started to wander, I only wondered if I could handle it. I wholehearted recommend to anyone who really wants to do any kind of a journey, whether it's a days drive or whatever, to give yourself the chance. We stopped often, whenever I felt that I needed to, sometimes every hour, sometimes in 2 hours, but I did it. We've done short trips in the past, and I did much better this time as it allowed for more relaxation since we had more time. Hugs, Barbara A in Auburn CA
[TMIC] Re: [Transverse Myelitis Support] Re: Fw: Rough day yesterday
Rose, I, too, am so sorry for all you and your family are going thru.
Please know that you are in our thoughts and prayers. With this group, you
have many friends that love you very much..Jeanne
---Original Message---
From: LaurieW
Date: 05/28/10 17:50:26
To: transversemyelitissupp...@yahoogroups.com
Subject: [Transverse Myelitis Support] Re: Fw: Rough day yesterday
Rose,
I'm truly sorry you and your family are going through such a hard time now.
I'm praying for you all and that you will have the strength you need to get
through this. Its truly amazing what docs can do these days. The pig parts
are used in heart valve replacements too and worked wonders for a friend of
mine so have faith. I called my aunt whose prayer group is large,strong and
accomplished many wonderful things in the past. They will be praying for you
as well. Please keep us updated. Hugs,Laurie
--- In transversemyelitissupp...@yahoogroups.com, Rose Nedved rosened...@..
wrote:
--- On Thu, 5/27/10, Rose Nedved rosened...@... wrote:
From: Rose Nedved rosened...@...
Subject: Rough day yesterday
To: DEVICS SUPPORT devics-supp...@gogglegroups.com, kathy
kathy1...@..., diane alaskadutch...@...
Date: Thursday, May 27, 2010, 3:48 PM
Hi all,
Yesterday was a tough one. My mom and my husband both had surgeries at the
same hospital yesterday. Hubby had a large tumor on his bach next to his
shoulder blade and my mother had to have her bladder rebuilt. { no Dave we
did not use Lego's or Lincoln logs}
They acually use pig parts. Wow technology has come a ways. Ed had an
outpatient
surgery but had complications so we stayed till after 8 last nite. Mom was
in pre-op room 8 and Ed was in pre-op room 10. Ran back and forth all day.
14 hours on the go. Way to much. Fell into bed at 10:30 last nite and did
not wake up once. Slept 8 hours straight.
Ed has a drain in his shoulder so I have to change his tube every few
hours. Mom has a suspious growth in her bladder. Please pray for them that
it is not the big C-word. Ed's doc thought it would be a simple removal but
had to take alot more out than anticipated. Now I have to pay the piper his
due today. I don't know how the Tm-ers can keep going and going. The
strength must come from within.
Praying for all,
Rose
[Non-text portions of this message have been removed]
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Re: [TMIC] Newly Diagnosed and Need Guidance
Hi, Ruben, We do welcome you with arms wide open and at the same time are sorry that old TM hit you. You will find a wonderful group of very caring people that you can share with when you need help. The only thing I can think of is to get right down to the DSHS and talk to them. I think you will get some help and shouldn't have to wait long. They can help with your medical plus food and misc. things, I would think. Please keep us posted on how you are doing. Jeanne ---Original Message--- From: Towery, Ruben Dale Date: 5/28/2010 6:16:21 AM To: tmic-list@eskimo.com Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL
Re: [TMIC] forgot to say that I'm home
Glad you are home and that you had such a fun and successful trip. Will be expecting more from you now! Janice From: Barbara Alma Sent: Friday, May 28, 2010 6:35 PM To: tmic-list@eskimo.com Subject: [TMIC] forgot to say that I'm home I'm sorry that I forgot to tell you all that I arrived safely home late on Friday, May 21st. We managed to put 7608 miles on our van and enjoyed practically the entire trip. It really was a great trip, and was almost without incident. With regard to health problems: I fared really well, other than a bout of pneumonia and a night in the hospital in Colorado. This sounds bad, but I have gotten pneumonia at home many times. It was worse getting it on the road, as it has taken me so much longer to recuperate than usual, so that's the worse part. It also made the last week and a half of our trip a bummer, without much fun. No gambling in Vegas since I couldn't handle the smoky casinos, but that probably saved me some money. We managed to see 2 shows though. I had about 7 days out of 46 of laying in bed, resting my back overall. Not too bad, but they were spread out. We managed to see family and friends that we hadn't seen in several years, did things that we didn't know existed, and went to states that we had planned on visiting, but didn't really know when we'd do it. All this because our god-daughter planned her wedding. So, right after this, I'm going to call her and thank her for planning her wedding and for us having the opportunity to push my inner thoughts into planning this wonderful trip. She really didn't have any awareness of this when she planned it, but my mind started to wander, I only wondered if I could handle it. I wholehearted recommend to anyone who really wants to do any kind of a journey, whether it's a days drive or whatever, to give yourself the chance. We stopped often, whenever I felt that I needed to, sometimes every hour, sometimes in 2 hours, but I did it. We've done short trips in the past, and I did much better this time as it allowed for more relaxation since we had more time. Hugs, Barbara A in Auburn CA
[TMIC] Anyone Remember Jude?
Hello Friends-Old and New, I have missed you all so much! As like most of you, I have been battling TM and other illnesses like MS, with all of the problems that go with it. It is no fun...and that's not what kind of email this is intended to be. Sorry I still have no picture to post, but promise to look for a decent one tomorrow. I know I have one or two decent ones laying around.
Re: [TMIC] Anyone Remember Jude?
Yes, you are remembered. You were there for me about 6 years ago when I first joined the TMers. Nice to hear from you! I just had your email pop up at 12:20 a.m.this Sat. morning but your email says it was sent Wed. at 7:05 a.m. What took it so long? I may just have a foggy memory but I'm not sure I remember your being diagnosed with MS. When was that? I know we (on this LIST) have gone around in circles determining just how someone with TM is later diagnosed with MS. Refresh my memory about your TM diagnosis then MS diagnosis. No hurry, though, I'm going to bed! Gary in Michigan - Original Message - From: Jude Hoops To: tmic-list@eskimo.com Sent: Wednesday, May 26, 2010 7:05 AM Subject: [TMIC] Anyone Remember Jude? Hello Friends-Old and New, I have missed you all so much! As like most of you, I have been battling TM and other illnesses like MS, with all of the problems that go with it. It is no fun...and that's not what kind of email this is intended to be. Sorry I still have no picture to post, but promise to look for a decent one tomorrow. I know I have one or two decent ones laying around.
Re: [TMIC] Anyone Remember Jude?
Hi Jude,
Good to hear from you. Of course we all remember you.
Have been wondering how you are doing.
Was going to ask Patti V. next time I talk to her if she has talke to you
recently.
I know you were having computer problems a while back.
Glad you have them solved and are back on line.
Hope you are doing okay.
{{Hugs}}
Heather in Calgary
- Original Message -
From: Jude Hoops
To: tmic-list@eskimo.com
Sent: Wednesday, May 26, 2010 5:05 AM
Subject: [TMIC] Anyone Remember Jude?
Hello Friends-Old and New,
I have missed you all so much! As like most of you, I have been battling TM
and other illnesses like MS, with all of the problems that go with it. It is
no fun...and that's not what kind of email this is intended to be.
Sorry I still have no picture to post, but promise to look for a decent one
tomorrow. I know I have one or two decent ones laying around.
