Attention??? Drifting off?? Solitude??? Huh, what were you talking about???
I don't have TM but I have all these other issues at the fantastic age of 54.??
I agree with Tracey:? too much going on everyday.? Life has gotten too
complicated.? I long for the?yesterdays?of the simple things? T
St. Patty's Day marks 8 years since Terry was DX'd w/TM. We will celebrate
with Corned Beef and Cabbage washed down with the traditional Irish Drink,
Tequila
Overall, he's doing phenomenal, especially considering how acute he was back
then. Seems to be continually improving and dete
Terry's immune system has improved over the past few years. Initially after
TM, he would get a cold which would last several weeks, as well as
bronchitis for 3 mos. We were very careful as to who he was exposed to. Now,
I am
catching everything that goes around, and his effects are min
That's the truth, Gaylon!
Ok, after all of this and the response's to our immune system I am more
confused than ever. Just shows how personal TM illness is to each victim .
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I don't have TM, my husband does, (8 years now). Therefore, I will try to
speak from the standpoint of understanding. However, I don't FEEL his pain,
but I SYMPATHIZE with his pain. I sympathize with; his daily issues, his
paralysis, his complaints, his clonus, his feeling of inadequacies, h
My Dear Friends,
Thanks to all of you for your kind words. Thank you to the fellow
caregivers who are committed to helping their spouses/sig others to have a
better
quality of life, for being in their lives and staying put!Aren't
relationships
suppose to be 50/50??? I am sorry for
Terry was 55 and hit at T-7.
He is still taking 7 mg of steroids a day. No cataracts, but his bones have
deteriorated. He will be going in for his second shoulder replacement soon.
Sandy
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Terry's butt went numb first, also...
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Well said, Mindy the Artist!
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I live here in So Cal., East Ventura County. We are about 20 miles from the
Sylmar fire. It is so terribly hot and windy now. Optimum conditions for
the fires, unfortunately. Yes, smoke fills the air. We went to Rick Steeles
home a few days ago. The last fire came right to his property
8 1/2 years + with TM for Terry and he just spontaneously walked at our
friends house the other last night. (Our friend being follow TM-er Rick
Steele).
He stands up from his wheelchair all the time and cooks, gardens, etc. He
sometimes walks up stairs with the support of the banisters and
I had some thoughts after I wrote about Terry's walking. With all the
research that I have done on TM, I have read that it is unlikely that he
should
have this much recovery so far down the road, (8 1/2 years).I guess each
case is so individualized, that anything is possible? Regardle
Toyota also gives a $1000 to equip a vehicle you buy from them.
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What a great guy your husband is, Debbie! You are right that it is
important as a caregiver to go to support meetings. It gives one a much
clearer
knowledge of the effects of TM. Not to mention, you meet the greatest people!
**One site has it all. Your email accounts, your
First off, Jude suffers so much and what she wrote is so selfLESS. She is
always thinking of someone else. We love you Jude!
As a caregiver I will put my 2 cents in. I SO sympathize with the daily
pain that goes with TM. I KNOW, but I don't FEEL the pain. I know it because
Terry is
Leila, ( I love your name)!
I asked Terry what he feels has made him take all these steps recently and
he can't really pinpoint one thing. His muscles definitely atrophied, but he
has begun to rebuild them a bit. He had GREAT LEGS! He doesn't do PT accept
in the summer in a pool. He can
Absolutely, Jan! Gilly offended no one! I spoke out as a caregiver in
hopes that those of you that want to hear my perspective, can ponder it...
Sandy
**One site has it all. Your email accounts, your social networks,
and the things you love. Try the new AOL.com
today!(http://pr.
Oh Jan! You just always brighten my day. You seem like you are always so
positive and under duress from TM! Thank you so much. Wow! I've become
active again on the forum. We go thru those lulls where some things don't
always pertain.
This forum has helped me so much, (I am sure
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--- Begin
This is an interesting topic and article to me. Terry had the ablation
several years ago due to supraventricular tachycardia, which was 100%
successful.
Now that he has been on Fosamax, I wonder if there is anyway that this
could reoccur?
Sandy
**One site has it all. Your e
HAPPY THANKSGIVING
TO ALL MY WONDERFUL FRIENDS ON THIS SITE. YOU HAVE GIVEN ME STRENGTH,
ADVICE, ENCOURAGEMENT AND PRAISES, JUST TO NAME A FEW THINGS.
I AM VERY THANKFUL AND GRATEFUL TO HAVE YOU IN MY LIFE!
XOXO Sandy
PS: AREN'T THE AROMAS IN THE HOME FANTASTIC TODAY?
**
I just want to say as I sit here in the background lurking, that I LOVE the
friendships that everyone has developed here. I LOVE that each of you (AND
me) can count on one another. Many of you have been thru a lot lately:
hospitalizations, deaths, illnesses, etc. There are so many stron
YOU ARE ONE AMAZINGLY INCREDIBLE PERSON, DEAR JUDE!ALTHOUGH MY WORDS ARE
FEW AND FAR BETWEEN, MY THOUGHTS ARE WITH YOU DAILY. PLEASE REMEMBER THAT.
YOU WROTE SUCH A KIND, BEAUTIFUL LETTER TO THE SITE TODAY. YOU BLESS US
WITH YOUR CONCERN FOR OTHERS, ALL THE WHILE AS YOU ARE HAVING S
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, (predn
Hi Everyone,
I was un-subscribed for awhile when we decided to run away to Mexico for a
week last month and just got back on board today.
I hope everyone is doing well. How is our Jude? (Make mental note to
self to write her privately)
It's very hot here today. Spring has not
I just found out through Gilly that our sweet, spitfire, Pam died. I was
not subscribed to this site, but just read through all the archives to find
out what happened. I am now re-subscribed. I decided I can't afford to
miss out on the daily lives of our friends.
First and foremost, she
VERY well said, Debbie!
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Add to the list of complaints: Have you noticed that at many hotels, the
ADA rooms are furthest from the elevators? And yes, you are lucky if they
have ADA rooms on the first floor. Also, the rooms often face the parking
lot and seldom the garden, pool or view? Is this discrimination? I
Terry takes many meds and use to have an elevated liver count.? Since he
started taking the herb,?Milk Thistle, is count is down below normal.?
-Original Message-
From: Kevin Wolfthal
To: tmic-list@eskimo.com
Sent: Fri, Jun 19, 2009 6:30 pm
Subject: [TMIC] weaning off of Tyenol?
Hi a
We purchase them at Trader Joe's, ( I don't believe they are national, yet), $8
for 100?
-Original Message-
From: bobby jim
To: parkersw...@aol.com
Sent: Sat, Jun 20, 2009 5:28 pm
Subject: Re: weaning off of Tyenol?
Ah yes, milk thistle.?? We take that here as well, among other
I am SO VERY sorry for your husband. I must be blunt here: that is very
selfish of your daughter. This is the day every Dad looks forward to, to
give his little girl to the one she loves.my husband would be
devastated! She needs a dose of reality. Who is paying for the wedding
THAT IS SUCH A FABULOUS STORY, JUDE!? I am so very happy for you and Dave!
SPARKER
-Original Message-
From: heyjude48...@aol.com
To: grace...@gmail.com; tmic-list@eskimo.com
Sent: Sat, Jun 27, 2009 1:41 am
Subject: Re: [TMIC] Re: (TMIC) Sex.
Gracie,
?
No need for you to feel "
WELL HELL FRIENDS!!! "I am up to 145lbs (I gained 10lbs). I wear size 10
jeans and really don’t feel comfortable with my NEW body. I don’t like the
way I look or feel. I do not like having a belly or the feel of my thighs
rubbing together. You asked for honest and here it is. Aging is HELL"
That is so very sweet of you! I needed that! The Doc told me yesterday
that I need to strengthen my core because I am having a lot of back issues.
So, my body is out of shape, but that is only temporary Terry is
always very kind regarding my looks! He is truly a sweetheart.
xoxox
The personal messages are our way of getting personal with our friends here on
the TM site.??Why not?? We all want to get to know each other with or w/o TM,
don't we?? Regardless of what we say, we?are one big?family and we forgive,
forget and move on!?
Sparker
Yes, it seems many of us have to fight to get our private insurances to pay
up!? We had Blue Cross, (a very good policy, I might add), when Terry was first
DX'd with TM.? They immediately refused all payment, fought me because any
treatment was in their opinion, "experimental".? ie:? Plasmaphere
Are any of you familiar with "wijits", using your hands to propel a manual
w/c??? Since Terry has issues with his shoulders, this may assist him.? Your
opinion is appreciated.
Sandy Parker
http://www.wijit.com/index.php
Sandy Parker, Caregiver
Ventura County, CA
Terry and I had the pleasure of meeting Rick at the first TM Symposium we
went to approx. 8+ years ago. Since then, we have had several visits with
he and his partner, Bob, (we live fairly close to one another).
The last time we had visited their home, they had recently put in the
redwoo
Might I suggest you forward this to Dr. Kerr to get his opinion?
Thanks,
Sparker
Ventura, CA
Hi Everyone.
I had unsubscribed for quite sometime and needed some help that only our TM
friends would understand.
Terry had been in increased pain of the lower extremities for the past few
months. He thought it may JUST be TM rearing it's ugly head, but decided to
check it out. He
Terry had spinal surgery Monday to remove a large calcified disk that was
compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon
feels that it MAY increase his mobility! He came home from the hospital last
night and is doing fairly well, although he certainly feels some
Just got back in town and checking these emails from the group, I
thought I might add my 2 cents... I have Meniers Disease and along
with all the symptoms you have described, it also can give you a vertigo
problem. I use to get dizzy and nauseous, but since onset 12 years ago,
that part o
I thought long ago that we decided that TM was "CRAP"...
:D
Sandy
Crappers, it is, Gilly!
And the debate shall continue.
Sssandy
Sometimes under these circumstances, food is
comfort. That's about all Terry had to look forward to
in the beginning of this CRAP. So, everyone bought food to him at
the hospital during his 2 months or so he was captive. Five years
later, he's lost over 1/2, (20lbs) of the weigh
I know this is a repeat by me, but the topic deserves it; As
Terry says, "I bend over, therefore I fart."...
Should I inform him that it's more often than when he just bends
over ( ;
Sandy
Terry was ambivilent in the past to get the flu shot and it has been on
ongoing debate here at the TM site. However,this year his Neuro highly
recommended it. He got it a couple of weeks ago and hopefully will avoid
the flu this year. I should get one too, but they are limited in our area
I would like to take a short independent private survey regarding bone
density as Terry has had two shoulder surgeries since the onset of TM and now is
possibly going to have to have shoulder replacement. He also has issues
with his knee, which may require surgery. We won't go into his hips
That is the best med for Terry... Helps me a bit, too, (when
he's suffering)...
Sandy
I DON'T KNOW WHY A BIT
OF TEQUILA ON A DAILY BASIS WOULD NOT DO THE SAME
THING,
Perhaps he has acquired an
allergic reaction to that type of shellfish, which is not uncommon. Terry
eats shellfish frequently without any adverse reactions, particularly if he
kills the parasites with tequila
Sandy
--- Begin Message ---
Perhaps he has acquired an allergic react
Thought it was time for
another update on Terry as he has had a bit of problems in the past
year. Those of you may remember that he had surgery on both
shoulders and it seems his bones are continuing to deteriorate thanks to the
long term continued use of steroids.
When TM hit him in
Terry takes 2400 mg Neurontin daily and has no noticable side
effects.
my dose is the same, except I take
600mg just a night. for the grogginess and allI have also had no issues or
side effects. Tho not sure about the long term. I have been increased to 900mg
once a night now.
I'm so very sad about Dana Reeve's death. It is indeed a sad
day. She was such a wonderful role model and truly a
hero.
Sandy
You are absolutely right, Jeff. You were quite fortunate
to meet them both. Dana was an incredible role model for someone
like me, a caregiver. But, she was much more than that. She was
graceful, charming with an infectious smile, she loved and loved deeply and yes,
she fought so har
Today, St. Paddy's day, is the day Terry was DX'd 6 years
ago. His progress has been great, considering he was just this
side of a quad in those days and now has gained so much mobility. Of
course, he has many side effects from steroids and other issues. But,
healthy otherwise!
In dis
http://www.texasequusearch.org/missing_persons/ReneeFox.pdf
Latest flyer I've seen. Same pretty picture,
but until we find her everyone will continue be be asked to PLEASE forward
this. Again and again. She has got to be
somewhere.
TMIC FRIENDS AND
MEMBERS:
The above is from Rene
Put your wings on and fly to Bob's BBQ, Jude! If it were that easy. ...
Terry gets uncomfortable flying and has difficulties if it's a long flight. In particular; getting to the bathroom. We usually just use our true kindness along with his disabilities and approach the friendliest f
Put your wings on and fly to Bob's BBQ,
Jude! If it were that easy. ...
Terry gets uncomfortable flying and has difficulties
if it's a long flight. In particular; getting to the bathroom.
We usually just use our true kindness along with his disabilities and approach
the friendlies
As Bob Cook said, when some of us first
come on to the TM site, we are looking for answers. I had been
lurking for a while before I submitted my first question years back, (OK, what 6
years now??) Anyway, you oldies will definitely remember Tom, Big Tom, who
could be a smart ars. Well,
Just a little update on my honey; the surgery yesterday
seemed to go well and they replaced just the ball and not the socket. They had
to do a lot of grinding of bones in order to do so – but apparently it’s less
invasive and should last him forever.
The surgeon wants to do the
other s
I AM EXTREMELY
APPALLED! He's a hypocrite and so very self-righteous, as far
as I'm concerned. I could go on, but I feel my blood beginning to
boil
Sandy Parker
I am very far from being a bleeding heart liberal, unbeknownst to
you. I am a conservative by nature. I won't bore you with the
details. It is just IN MY OPINION, Limbaugh is a hypocrite when he can be
excused for HIS ADDICTIONS, yet he can play on someone else's disability.
That's wher
WE WERE TOLD AT THE BEGINNING OF TM by Terry's internist, that the worst thing would be the steroids and the list would be longer than his arm. So, he wanted to get him off it asap. We never saw that internist again and of the other 8-10 doctors he saw, they all failed to mention this and we "f
Pam,
I, too, am very upset by our "system", or more frankly speaking, the
administration. Many people are upset by it and many
don't support the war, BUT they support our
troops. I support our troops 100%. However, the
reason we went to Iraq is what is questionable to me, and thousand
MERRY CHRISTMAS AND A HEALTHY & HAPPY NEW YEAR
TO ALL OF YOU!
Terry & Sandy Parker
Warmed up to 56 degrees now; up from 32 the past few mornings!
Chilly for SoCal and counting our blessings!
Jenna & Sally,
My husband has had TM for almost 7 years and Jenna, I agree with you 100%.
Lessen your burdens by hearing (or envisioning), waves crashing on the shore,
the roar of a river or the trickling of a stream, leaves blowing in the wind,
a watercolor sunset, the sound of a child'
You may also consider posting a bulletin at your apt. asking for "free"
assistance in grocery shopping, etc. Haven't most of us needed and given help
many times in our lives? Many people within your building may be willing to
help. They must go to the grocery store for themselves anyway, o
MY APOLGIES, AKUA, FOR NOT KNOWING ALL THE FACTS. THERE WERE SEVERAL EMAILS
REGARDING THIS TOPIC AND I WAS NOT ABLE TO READ THEM ALL. I WAS JUST TRYING
TO HELP YOU WITH OPTIONS THAT UNKNOWINGLY WERE NOT AVAILABLE TO YOU.
SANDY
pulling foot out of mouth :)
Yikes!
I guess no one is list
?
Hello My Friends!
?
You are never far from my thoughts even though I am no longer on the list
chatting back & forth.?Life,?for me, is very busy these days.? No excuse, but
that's how it is.?
?
We are doing well these days.? Terry is down to his ol' slim self after packing
on those 50+ ster
Terry and I will be attending and look forward to seeing some of our old
friends as well as getting acquainted with new ones!
Sandy Parker
**Ideas to please picky eaters. Watch video on AOL Living.
(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-du
OH JUDE!? YOU ARE EVER THE DIPLOMAT!?? In all your current distress, you are,
(as always), thinking of others.??
What you said came our beautifully!?? I so wished we were hearing more from
you, but I understand things are difficult for you right now.
?
You are always close to my thoughts an
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