I totally agree Rick. Nikki Durham, UK. Sent from my iPad
On 30 May 2013, at 19:10, Rick Ashford <crashf...@outlook.com> wrote: > Hi Nikki, Its a sad thing that happened to you but you are a lucky girl to > have such a great mate. So little credit is given to the wives and husbands > that live through our everyday struggles. My wife has always cared for me > every step of the way. > Lets all give a rousing round of applause for the husbands and wives that > love us unconditionally. We love you all so much. Rick in Tn > CC: tmic-list@eskimo.com > From: nmacleo...@yahoo.co.uk > Subject: [Bulk] Re: [TMIC] Re: Transverse Myelitis > Date: Wed, 29 May 2013 23:05:35 +0100 > To: malugss...@gmail.com > Hi everyone I hope u are well i am Nikki 26 years old and live with my > fiancee who is also my full-time carer.Amy it just demonstrates the fact that > many people around struggle to deal with so we are left quite alone but if > you have the fight and determination like you we can get through it. Like you > also I was affected highly at C4. This is my story below: > > On Mon 14th Feb 2011 I felt really poorly and had had a rough weekend. I was > suffering from a chest infection but I felt somewhat different that day and > was in bed really early as I was suffering with a severe headache so bad I > couldn't stand light or lift my head from the pillow. I went to sleep and > woke up with my partner at 5am, and at that point I couldn't feel my legs or > move them but thought I had trapped a nerve. I also still felt poorly but I > also had another symptom which was a painful and stiff neck. After waking up > at 8am when my mam came to my house the numbness was going up my body and my > noon I could only move my head. My fiancé and mam decided to call 999 and I > went to the Emergency Department had an MRI, transferred to a specialist > hospital where I was put on 5 days of IV steroids and weeks of oral > sterothids, I was also given plasma exchange but it was too late as I hadn't > been took seriously on my previous visits to A&E. Luckily I could still > breathe on my own and after intensive physiotherapy over 2 years I gained > partial usage of my arms which has improved over time. I was 23 years old > when TM struck and spent my 24th birthday in one of the many hospitals I was > in and put on a brave face for the sake of everyone else. Even at the time > doctors have told me I will never walk again and i have been told that over > and over again. Its something which I have came to terms with but others > haven't and recently I've had my Achilles' tendons cut to try and correct the > severe foot drop & toe drop as I won't need them to walk. > I have a lot of continued support of my fiancée who has been my rock and > total support through all of this - I couldn't have got through it without > him. He's one in a million!! > The saying "you don't know what you've got til it's gone" has never been more > fitting. Who thought that knowing when you need the toilet would suddenly one > day be the only thing you ever want BUT he ho that is why WE HAVE EACH OTHER > to bounce and share things. > Sorry for rambling! > Nikki > Durham, UK. > Sent from my iPad > > On 29 May 2013, at 21:39, Dalton Garis <malugss...@gmail.com> wrote: > > Janice; > > Has Amy tried Lyrica? For me it is the only medicine that has kept the bee > stings away. > > Dalton (TM Class of '2009) > > From: Janice Nichols <jannic...@gmail.com> > Date: Wed, 29 May 2013 11:38:19 -0500 > To: amy shultz <mic...@hotmail.com>, TM group <tmic-list@eskimo.com> > Subject: Re: [TMIC] Re: Transverse Myelitis > Resent-From: <tmic-list@eskimo.com> > Resent-Date: Wed, 29 May 2013 09:38:16 -0700 (PDT) > > Amy, I think we have talked before, but I did not know the extent of how TM > left you. I am so very sorry that that damn TM did this to you and at such > a young age. You are a very > courageous lady. You have not let TM claim the real you - just your > body. But, it would be pretty hard to live with. Family and good friends > are a tremendous help in this situation. > Some with TM have lost spouses, family, and friends due to TM. They just > don’t want to deal with it – so you are lucky in that way. I am too. > Keep bugging the doc’s to find a medication > that can ease the pain – with all that is out there now, there has to be > something for you for pain relief. > > Keep in touch with us and let us know what you are doing and how you are > doing. Believe me, we care. > Janice > > > From: amy shultz > Sent: Thursday, May 23, 2013 7:40 PM > To: TM group > Subject: RE: [TMIC] Re: Transverse Myelitis > > My TM story began in March of 96. I was 19 yrs old and had graduated from > High School and had a soccer scholarship to Notre Dame. While having an MRI > on my jaw for TMJ the doctors said I had an "unrelated" seizure. After waking > up in the hospital my arms were really heavy and had horrible pain around my > mid section, and couldnt move my legs. By the next morning I couldnt move my > arms or legs, couldnt talk. Couldnt breathe. I endured test after test after > test. They kept thinking MS as my mom has MS but they couldnt confirm it.I > was in a rehab hospital and a nursing home for a total of 14 weeks. After > many weeks I was finally diagnosed after a second MRI showed lesions on my > spinal cord at C 4-5. Due to it being so long since I had had the initial > attack and doctors not familiar with TM, I was not treated with any steroids > or any other treatment. After intense therapy and many prayers after about 8 > months I got use of my arms. Not 100% but some. My arms came back very > slowly. I was in therapy for months and months. I have yet to show any > improvement with my legs and am ventilator dependent. I had a neurogenic > bladder and bowels. I had my bladder removed in 03. I havent show much > improvement after the one year mark. I hold on to hope that one day there > will be treatment for us, or others like us. I deal with horrible pain and > spasms daily. Something I wouldnt wish on anyone. I have been unable to > return to school. It seems I am in and out of the hospital so much it makes > doing anything nearly impossible. Last year alone I was inpatient 13 times. > Not counting ER visits. I am on over 30 medications a day. I get exhausted > very easily and nap alot. But I still enjoy having fun and hanging with > family and friends and this TM will NEVER stop me from being me. > > Amy Shultz > Columbus Ohio > > From: heyjude48...@aol.com > Date: Fri, 26 Apr 2013 23:09:12 -0400 > To: tmic-list@eskimo.com > Subject: [TMIC] Re: Transverse Myelitis > > Hi Everyone! > > It's Jude Hoops. I was just reading the quad list and they are talking about > their injuries at what level they are injured, how it happened and when it > happened. Do you think that that would be something we could do too? > > I think it might be interesting to know how we were all injured or got sick > and how long ago it was. We've all been on this list for a long time now and > I was wondering whether any of us had gotten any better over the years. > > Let me know what you think. Just write a small paragraph about how you came > to have TM, what level your injury is at and if you have seen any improvement > over the years. > > I love you all so much and have been thinking of you. > > Hugs, > Jude (TIAD)
