FW: NEW SUBCRIBER
Ann.Lindstrom(AT)octel.com
Tue, 21 Oct 1997 09:07:18 -0700
> ----------
> From: Lindstrom, Ann
> Sent: Tuesday, October 21, 1997 9:05 AM
> To: tmic-list(AT)eskimo.com
> Subject: RE: NEW SUBCRIBER
>
> AZ - Thanks for sharing your story. You passed on alot of good info
> and
> advice. About two years ago I got a scooter, but have only used it
> once. I had trouble getting good with steering, stopping etc., but I
> am
> coming to the realization that I have got to get it out and practice
> with it. I am really tired of my activities being limited - thanks
> for
> the "push"!
>
> > ----------
> > From: AZMAINIAC[SMTP:AZMAINIAC(AT)prodigy.net]
> > Sent: Monday, October 20, 1997 7:43 PM
> > To: Transverse Myelitis
> > Subject: NEW SUBCRIBER
> >
> > I know this is long, but his is a synopsis of my past with TM.
> > I lived in Millinocket, Maine, a small town of about 6000. In
> October
> > of
> > 1971 I got a flu shot. The week of Thanksgiving I was diagnosed with
> > mononucleosis. On Sunday, December 12, I was put into the hospital
> due
> > to
> > weakening of the legs. On Monday, I got out of bed to urinate. I had
> > to use
> > a commode because of the weakness in my legs. I did not make it to
> the
> > commode. I fell and caught my right hand in the bedrail. I was on my
> > knees
> > and they were getting weaker. I finally got my hand unstuck and
> > immediately
> > fell to the floor. I weighed 230# and it took 4 nurses to get me
> back
> > into
> > bed. The only medication I was getting was vitamins
> > That afternoon, my mother came to visit. I had my legs crossed and
> > asked
> > her to uncross them. After she did, she immediately went and called
> > the
> > doctor. She wanted me transferred to a larger hospital in Bangor
> about
> > an
> > hours drive away. The doctor did not know who to send me to at the
> > larger
> > hospital, so my mother told hum to call the hematologist that my
> late
> > father had had. The hematologist told him I needed a neurologist.
> The
> > closest neurologist was 2 hours away in Waterville and another in
> > Portland,
> > a 4 hour drive..
> > On Tuesday, when they wheeled me out of my room, I did not know
> > whether I
> > was going to Waterville or Portland. As I was being loaded into the
> > ambulance, a red Cadillac with a white roof, I found out I was being
> > transferred to Waterville. My mother rode in the front with the
> driver
> > and
> > one of my cousins rode in the back with me. There was no nurse in
> the
> > vehicle. When we reached Bangor, we stopped for gas. I slept most of
> > the
> > way, as the doctor gave me something to sleep because I did not like
> > riding
> > backwards, let lone lying down in a moving car?I was one who got car
> > sick
> > when I was young.
> > When we reached Waterville, I remember being wheeled down a hall. I
> > saw a
> > clock on the wall and it was ten minutes to one./ the next thing I
> > remember
> > was seeing the faces of two doctors with their blue masks and hats.
> I
> > then
> > felt a sharp pain in my throat and passed out again. When I came to,
> I
> > don't remember if it was that day or the next, I was connected to a
> > respirator attached at my throat. I could barely move my arms. I was
> > paralyzed to nipple level.
> > I was on valium, 25 mg every 4 hour, along with 20 mg of prednisone
> > every 4
> > hours. I was in ICU for over two weeks and when I was moved to a
> room,
> > I
> > was not on the respirator constantly and the paralysis had regressed
> > to
> > below my navel. I remember the doctor using a felt pen to mark the
> > level of
> > paralysis. My torso looked like a kid had drawn a bunch of lines on
> > me. I
> > was told that I had Guillain-Barre Syndrome.
> > I started becoming concerned that I would be a paraplegic because
> the
> > regression to the waist level was fast and there was nothing
> happening
> > below the waist. Then in late February, the Physical Therapist, who
> > had
> > been exercising my legs, pushed my leg back and I had a reflex to
> her
> > movement. The Physical Therapist was the most important person in my
> > recovery. She was German and the way she pushed me to do things, I
> > thought
> > she was related to Hitler. There were some days I did not feel like
> > going
> > to therapy, but she would not take 'no' for an answer. On March 31,
> > 1972, I
> > walked out of the hospital with forearm crutches. I still had a
> foley
> > catheter.
> > I gradually improved. One thing I learned was to keep busy. I had
> > worked in
> > a grocery store and they let me sort and mail the coupons they got
> in.
> > I
> > can't tell you how may jigsaw puzzles I did. I even crocheted an
> > afghan.
> > In September, I went to school. I went to an emergency room to have
> my
> > catheter changed. I had to have it changed about once a week because
> > it
> > would plug up even though I irrigated it once a day. I lost count
> > after
> > 36. The doctor in the ER pulled the catheter out without letting all
> > the
> > water out of the balloon. It did not hurt too much as I did not have
> > full
> > feeling. When he inserted the new one in, he did not put it in far
> > enough.
> > When he filled the balloon, it hit an nerve and I could not sit up.
> I
> > told
> > him to take the #$#$%%$# thing out. He looked at the nurse and said,
> > "This
> > gentleman is not happy with his catheter." I said, "You're (AT)##%$#(AT)
> > RIGHT."
> > That was my last foley. I then started wearing Pampers as there were
> > no
> > Depends or any equivalent on the market. I do not ever want to hear
> a
> > woman
> > tell me how uncomfortable a Kotex pad is!!
> > I progressed to the point where I was working full time in a grocery
> > store.
> > I was even unloading trucks. The only problems I had was
> incontinence
> > and
> > spasticity in my left leg.
> > In 1974, I married and went back to school. I moved to Arizona in
> 1976
> > and
> > worked at a job testing light fixtures. I would climb the equivalent
> > of 3
> > flights of stairs between 10 and 20 times a day. I was on Valium and
> > Darvon
> > because of the spasticiy. My left leg would spasm when I was
> sleeping
> > and
> > some days I would wake up with pain in my left groin.
> > The pain and spasms had been getting gradually worse. In 1978, I
> went
> > to
> > Mass General to get checked out. Dr. Raymond Adams, Chief of
> > Neurology, was
> > my doctor along with a resident who performed a lot of the tests. I
> > had a
> > myelogram, spinal tap, EMG and some other tests. I was told then
> that
> > I had
> > had Transverse Myelitis and not Guillain-Barre. I was put on
> Baclofen,
> > which had been approved by the FDA about 6 months before. About 2
> > months
> > after that I got a lecture from a pharmacist, a friend of my ex
> > father-in-law, who was a sales rep for Geigy. The one thing he
> > stressed was
> > not to quit it cold turkey.
> > The doctor in Maine may have put TM in my chart, but the nurse said
> I
> > had
> > GBS because there had been a patient in about 6 months before. In
> > 1976,Guillain-Barre became well-known due to the swine flu vaccine.
> I
> > still
> > wonder if the flu shot that I had in October previous to the mono
> had
> > contributed to the TM. To this day I will not get a flu shot.
> > In 1981 I changed jobs and had a desk job. The spasticity began to
> > increase. It got to a point where I was missing a lot of work. In
> > November1982,I had a T.E.N.S. (transcutaneoue electronic nerve
> > stimulator)
> > unit implanted. It consisted of an electrode implanted on my spinal
> > column
> > at T2 with a wire just underneath my skin running to a receiver
> > implanted
> > under my left breast. I then attached an antenna, which looked like
> a
> > flat
> > donut , to my skin where the receiver was. The antenna was wired to
> a
> > unit
> > a little larger that a pack of cigarettes from which I could control
> > the
> > unit. It generated an electrical impulse which gave a tingle about
> > nipple
> > level. It would scramble the message about pain that would go to the
> > brain.
> > I lost my job and began working in the home healthcare business with
> > my ex
> > and her parents. I was making deliveries and even setting up
> hospital
> > beds.
> > In June of 1987, I quit working and became Mr. Mom. I was having a
> lot
> > of
> > UTI. I was slowly starting to go downhill. I began to tighten up and
> > was
> > back in a wheelchair in July of 1988. I could stand up for about
> two
> > minutes without having pain n my left groin. I was put into Barrow
> > Neurological Institute in Phoenix. I was under the care of a
> > neurologist
> > who is now Chief of Pediatric Neurology at BNI. I had a CAT scan on
> > my
> > head to check for MS. The doctor said there was nothing there and I
> > told
> > him a lot of other people already knew that. I had other tests and
> was
> > told
> > that there was nothing that could be done.
> > I still had the feeling that it had something to do with the
> > circulation in
> > my legs, so in February, 1989, I went to the Arizona Heart
> institute.
> > Dr.
> > Dietrich passed me off to a neurologist. He recommended that I see
> Dr.
> > Richard Herman, who was Medical Director at Good Samaritan Rehab at
> > the
> > time. Dr. Herman had spent 5 years at Temple, 5 years at Stanford
> and
> > 5
> > years at Dartmouth in Rehab Medicine. He was doing research on the
> > infusion
> > pump for baclofen.
> > I was given a cystometrogram and a neurocycle test in which
> electrodes
> > are
> > attached to your legs and the pedaling is done for you and the
> results
> > are
> > recorded on computer. I became the first 'guinea pig' in Phoenix. In
> > June,
> > I went through a blind study. A CMG was run. Then something was
> > injected
> > into my spinal column. It was either baclofen or saline solution.
> Only
> > the
> > anesthesiologist who did the injection and nurse who assisted him
> knew
> > what
> > was injected. After the injection another CMG was run. The next day,
> > the
> > same procedure was repeated. On the second day, I really noticed the
> > difference about a half hour after the injection. It was the
> baclofen.
> > All
> > this was done under FDA protocol. Everything had to be followed to
> FDA
> > specs, which is why it takes so long for drugs to be approved.
> > On July 17, 1989, The pump was implanted in my left abdomen. It is
> > about
> > the size of a hockey puck. A small catheter is implanted just under
> > the
> > skin and goes around to the spinal column where the medication is
> > delivered
> > at about L2. I had a CMG once a month for 12 months after
> > implantation.
> > In October of 1989, I stopped using the wheelchair in the house.
> > Eventually
> > I stopped using the wheelchair completely. That was the wrong thing
> to
> > do
> > as it limited what I would do. In may of 1993, I went to a trade
> show
> > in
> > Las Vegas with my ex. Walking around was getting to me, so I got a
> > wheelchair. After that, I decided that I would be able to go more
> > places.
> > So, in January, 1994, I went to Vegas by myself to see a friend from
> > back
> > home who was vacationing there.. I can't tell you the freedom I
> felt,
> > even
> > though it was in a wheelchair.
> > The medication greatly reduced the spasms and stopped the pain. I
> was
> > also
> > able to stop wearing DIAPERS after 17 years. Yes, I still have a
> > little
> > leakage now and then and if I don't pay attention I have a accident.
> I
> > do a
> > self cath if I am going out some where as I have a residual in my
> > bladder
> > and do not want any more UTI's. I used to take 80mg orally of
> > Baclofen, I
> > now get 1.2 mg./ day?50 ug/hour.
> > In April of 1995, my ex and I separated. I had been on Paxil for a
> > year and
> > a half. I was put on it because I was told I had depression. I
> wasn't
> > "depressed", but I took the medication to make everyone happy. HA!--
> I
> > didn't know what depression was. After I moved out, I slowly tapered
> > off
> > the Paxil. I hit the bottom of the barrel. On July 6, I had an
> > appointment
> > with my internist, my primary care doctor whom I have known for 9
> > years.
> > When he came into his office and asked me what was going on, I
> started
> > crying and did not stop the whole time I was there.
> > BINGO!!!__DEPRESSION!!!!! I told him I wanted to be put into the
> > hospital
> > and have a complete checkup. I did not want to do it as an
> outpatient.
> > He
> > told me he would have to put me in the Behavioral Health Ward to get
> > me
> > into the hospital. I told him I did not care. I wanted to have tests
> > run.
> > The next day, I met with a psychiatrist. I cried through most of the
> 1
> > ½
> > hour interview. When he finished he told be I was manic-depressive.
> I
> > thought that meant that I was a lunatic and would end up in the
> state
> > hospital. After I settled down, I went down the hall just looking
> > around. I
> > went into one room andhanging on the wall was a paper listing some
> > people
> > who had been either in depression or manic- depressive. The first
> > person on
> > the list was Abraham Lincoln. Others were Edgar Allen Poe, Edna St.
> > Vincent
> > Millay, Mozart, Beethoven, Mike Wallace, Art Buchwald???
> > Hey, I'm not a lunatic, I'm in a group of well-known people.
> > I made 7 visits to "Club Med" between July 1995 and April 1996. The
> > vacations were to get mediation adjustments or changes. I also spent
> > 10
> > weeks in a day program to learn what I had and how to deal with it.
> I
> > have
> > learned a lot and one of the major things that I learned about
> > depression
> > is that the outside world does not understand what it is. I did not
> > when I
> > was first told. I am now on Wellbutrin and Depakote.
> > In September 1996, I went for a sleep study. I learned on the
> internet
> > that
> > sleep apnea could cause depression. I remembered that my ex had told
> > me
> > that I would stop breathing sometimes when I was sleeping. The
> doctor
> > I had
> > had spent 13 years at Columbia and was an Associate Professor at the
> > University of Arizona. I was diagnosed with Restless Leg Syndrome.
> > When I would get in a very relaxed state, my left leg would start to
> > spasm.
> > I always thought that it was due to TM. Yes., the infusion pump
> > reduced the
> > severity, but did not completely stop them. After trying a couple of
> > different medications, I am able to go to bed and get in a relaxed
> > state
> > without spasms occurring.
> > My brain was not going to sleep. It would wake up bout every 90
> > seconds,
> > but I would not remember it.
> > It also helped with the depression as my brain was not going into
> REM
> > sleep
> > which is when serotonin is made. I even started to dream
> >
> > These are some of the things I have been told or learned:
> > 1. Dr. Hermann said that 95% of pain in people is caused by tight
> > muscle.
> > He also said that some people who take medication orally by the time
> > it
> > gets through the liver and blood brain barrier about 5% may be left.
>
> > 2. A UTI will cause spasms. Also regarding the bladder, the rate at
> > which
> > the urine goes into the bladder will have an effect on spasms. At a
> > fast
> > rate, spasms will occur before the bladder is full. Spasms may not
> > occur if
> > the rate is slow. The moral of this story is do not drink anything
> > with
> > alcohol. I can state this from experience! I did not know this
> before
> > the
> > CMG and I always thought a glass or two of wine in the evening would
> > help
> > settle the spasms down. I WAS WRONG!
> > 3. Dr.John Vivian, a urologist, frequently stated, "Bladder and
> > bowel,
> > bowel and bladder"
> > (I can relate to this as eating too much Mexican food will
> > cause
> > spasms i.e. gas)
> > 4. "Laughter is the best medicine!" When I was having the CMG's, I
> > would
> > watch the graphs of 8 of the electrodes. The activity
> > would
> > increase if I quieted down and would lessen if I would start talking
> > or
> > moving around a little. I also had a cousin who was diagnosed with
> > Hodgkin's Disease when she was 16. She lived for 17 years with it.
> She
> > was
> > always in a joking mood and I believe that that is what kept her
> > going.
> > 5. Using a wheelchair will give you more freedom and tire you out
> > less. It
> > will also give you some aerobic exercise.
> > 6. The infusion pump for Baclofen has been successful for me. I
> > cannot
> > state that it will help everyone, but it is something to be looked
> at
> > depending on the individuals circumstances. It is like any
> medication.
> > Some
> > people will respond and some will not. The procedure to have a trial
> > to see
> > if the pump will possibly work has been changed from what I went
> > through. I
> > believe it is only the injection of the Baclofen into the spinal
> > column to
> > see if the person responds, but I am not sure. One would have to see
> a
> > doctor regarding the procedure. I am on my second pump. The first
> one
> > lasted almost 5 years. It is because of the battery which lasts 3 to
> 5
> > years depending on how the pump is programmed.
> > 7. Depression is nothing to be ashamed of. It is like being a
> > diabetic.
> > One is lacking a chemical in the brain. Education is the best way to
> a
> > recovery. One does not have to cry to have depression. There are
> other
> > things that are symptoms of depression. If you feel you might have
> > depression, check out Depression Central on the internet.
> > 8. I have been to some of the top doctors in the country. I have
> > also had
> > some idiots. If you do not feel comfortable talking to your doctor,
> > get rid
> > of him/her. You need to be able to communicate. Keep a pad of paper
> > around
> > the house to make notes or questions on so that the next time you go
> > to the
> > doctor you can tell him what has been happening or if you want to
> ask
> > him
> > something, you won't forget.
> > 9. DO NOT EVER GIVE UP! Yes, there are times you will feel like it,
> > but
> > keep busy and you can do it.
> >
> >
>