Re: [TMIC] Happy New Year

[fatimah shehadeh]

Happy new year to all.
Tima


On Tue, Dec 31, 2013 at 9:00 AM, Nikki Macleod wrote:

> Hi everyone just a quick message to wish you all a very happy new year and
> best wishes for 2014. I hope you all had a lovely Xmas and have managed to
> avoid any health problems. I've noticed it's been rather quiet but I expect
> everyone is so busy at this time of year.
> Best wishes,
> Nikki
> UK.
>
> Sent from my iPhone
>

Re: [TMIC] RE: Adaptive Controls on Cars

[fatimah shehadeh]

Hi Jude,

The summer was ok. I went last week with the family to Michigan to visit my
cousins. Next week, the kids will start school and I will have some time
for myself and my job search.
I have modified my car for hand control last year. I had to get about 5
driving lessons before passing the driving test for the modified car.
Unfortunately, the insurance does not cover the expense. the lessons were
$118/hr each. and I  had to  pay extra to use the rehab car for the driving
test.
The car modification cost was $2000( push/pull for brake and gaz control,
crossover for signaling, and a spinner knob).

you can call me if you want any additional information
Tima(732-310-1194)


On Wed, Sep 4, 2013 at 4:42 PM,  wrote:

> **
> Hi Everyone,
>
> How was your summer?  Did you have a good one?  What did you do for fun
> and recreation?  Did you go away or did you stay at home with your families?
>
> I was wondering if you could tell me if any of you have adaptive driving
> controls on your cars or vans?  If so, were they covered by your insurance
> companies?  Have you had any trouble getting your drivers license?
>
> Thanks so much,
> Jude
>

Re: [TMIC] Baclofin Pump

[fatimah shehadeh]

Rob,

Congratulations. I am happy to hear of your recovery.

Tima



On Tue, Jul 16, 2013 at 1:58 PM, Robert Pall  wrote:

>
> This is my second journal posting on the progress of the baclofin
> pump which was inserted in on June 28, 2013.
>
> As of yesterday after being cleared by the neurosurgeon to begin
> doing all activities I once again began my swimming regiment. I had
> intended on doing a much shorter workout...but when I got into the pool I
> found I had so much energy that I ended up swimming laps for over one mile.
> Today I did the same workout with almost zero fatigue. In addition I have
> started walking my 70 lb Golden Retriever for at least 40 minutes per
> day...again with no side effects.
> Unlike last week where I was suffering from spinal fluid leakage, for
> the past few days I have been feeling better than I have for the past 15
> years. I think I am walking better, faster and with far less limping.In
> fact I can report at this time no negative effects from the surgery.
> I went and saw my neurosurgeon..Dr Neil Holland today and via a
> handheld computer he basically doubled the amount of baclofin that I had
> received as the base amount after surgery.
> I cannot recommend  this procedure highly enough for all TM patients
> suffering from spasticity and or banding. I believe tghis pump has
> dramatically in a good way effected the rest of my life.As per the Doctor I
> should only require a refill (injected directly into the pump)
> approximately one time a year!
> Thank god and my new neurologist for making the quality of my life so
> much better. Anyone interested should speak to their neurologist and ask
> for a trial. At the trial a 3 hour supply of the medicine is injected
> directly into the spine. If you are like me the difference in feeling comes
> close to miraculous. I hope all that are able (and have the proper medical
> insurance) to seriously consider this surgical option. The worst that can
> happen is it has no effect and you have it removed.
> I hope anyone considering this option who desires additional
> information will call me directly 732-536-5308.
>
> Alll the best!
> Rob in New Jersey   .
>

Re: [TMIC] Hobbies, Creative Outlets, Amputation

[fatimah shehadeh]

Hi Jude,

I am sorry about your leg problems.

I am trying to keep busy this summer. It is my first summer without work,
so It is taking me time to adjust for being home.
In order not to go insane, I am taking online classes( they are free). I
always like writing, but never had the chance. I am taking a class on
Science Fiction which requires lot of reading.
I am taking classes in computer programming as well.

If you want to chat, you can give a call or I can call you whichever works
for you.

Best of luck,
Fatimah


On Thu, Jul 11, 2013 at 3:22 PM,  wrote:

> **
> Hi Everybody~
>
> What are you all doing this summer to pass the time?  I've been writing
> back and forth with a couple of other members and they have sent me
> pictures of the things that they do for creative hobbies, places they've
> been and things they like to do.
>
> I'm stuck here in bed, in this hot,clammy weather and need some
> inspiration to get me through these long days.  Whatever you're doing to
> make yourselves happy, will you send me a note and maybe some pictures of
> what you're doing?
>
> Does anyone know of another person who has had a leg or an arm taken off?
> I want to talk or write to someone who lives with an amputated limb.  I am
> possibly going to have my leg removed, but I can't make that decision
> without talking to someone who has had it done.
>
> Love & Hugs,
> Jude
>

Re: [TMIC] Baclofin Pump

[fatimah shehadeh]

Good luck Rob.

Fatimah(NJ)


On Wed, Jun 26, 2013 at 12:08 PM, Robert Pall  wrote:

> Well the time is finally here. I go into the hospital tomorrow for
> insertion of the Baclofin Pump. I plan on doing a diary in order to give
> information to others considering getting one. I am extremely excited about
> the prospect of finally getting some major relief from this awful
> affliction.
> To be continued at my first opportunity.
>
> All the best!
> Rob in New Jersey
>

Re: [TMIC]

[fatimah shehadeh]

Janice,

I got my TM 2 years ago. It started suddenly with sharp/severe pain at the
waist that lasted for an hour. I got paralyzed waist down within half hour
of the pain episode. I still have pain but it is not severe, so I don't
take any medication for it. With physical therapy, I walk using a walker.
The Bowel and bladder problems remain unchanged. It is life altering and
depressing condition. I am still trying to adjust to the new norm.

Fatimah (NJ)



On Mon, Jun 24, 2013 at 10:38 AM, Janice Nichols wrote:

>   Hello!
>
> When I have read the stories of how TM first attacked you all, some/many
> have said that you had a severe pain around the
> middle of your body – banding.And for some, it has stayed with you.
> I would like a response from all of you as to whether
> or not your TM started with the severe pain or not. Also, is it still
> with you today or did it get better with time/meds.
> I would like to be able to give my doc some kind of percentage of how TM
> has hit myself and others.   Would really appreciate
> responses.
>
> Thanks,
>
> Janice
>

Re: [TMIC] Fwd: Baclofin Pump

[fatimah shehadeh]

Good luck Robert.



On Mon, Jun 10, 2013 at 12:17 PM, Robert Pall  wrote:

>
>
>
>  -Original Message-
> From: Robert Pall 
> To: tmic-list ; ahopeful ;
> shirleyabreu2005 ; vet2binnj ;
> iluvtsom ; suelaufer ;
> frossclark ; Mike.Fitzgerald <
> mike.fitzger...@us.deltagalil.com>; purple442000 ;
> lbiehler ; amy.warner ;
> JudyD203 ; lbilliexx ; robthecfo <
> robthe...@aol.com>; cgs247 ; MPK0706 <
> mpk0...@comcast.net>; traqua22 ; Margo.Orlin <
> margo.or...@gmail.com>; ppeters ; campeoner <
> campeo...@msn.com>; baceti ; aaceti ;
> SueLaQue ; tikiconway ; Fdocz
> ; Baeason ; fulltimewmc9841 <
> fulltimewmc9...@aol.com>; maegan ; rmomcat <
> rmom...@comcast.net>; nzipunks ; careenap <
> caree...@aol.com>; arp1011 ; tac8246 ;
> motherogs ; SueLaQue ;
> jandpstevens ; jaydeeteefour <
> jaydeeteef...@gmail.com>; kaysquared05 ; Mrsdeb39 <
> mrsde...@aol.com>; louie405philly ; r1aquilino <
> r1aquil...@aol.com>; alkehoe ; ktekmcg <
> ktek...@aol.com>; deefibit ; thavens <
> thav...@optonline.net>; teambambu ; rollinmama848 <
> rollinmama...@yahoo.com>; NIYURYS ; DOCTORAINK <
> doctora...@aol.com>; ABERCHES ; ABERCHES <
> aberc...@aol.com>; SHARONIZER ; SHARONIZER <
> sharoni...@yahoo.com>; ANDREEB123 ; GARY5316 <
> gary5...@comcast.net>; GARY5316 ; MOMC745 <
> momc...@optonline.net>; AMANDACAV ; beans200 <
> beans...@aol.com>; harte52 ; FLYNCH8280 <
> flynch8...@gmail.com>
> Sent: Mon, Jun 10, 2013 12:15 pm
> Subject: Baclofin Pump
>
>  After months of deliberations and concerns I am finally going to have
> the Baclofin Pump put in my body. After going thru the trial and seeing the
> results I felt I had to give it a try. I am going for the Pre certification
> tomorrow and having the surgery on the 27th.
> My main concern is that I am one of the walking wounded. I can walk (short
> distances), drive and have very little pain. That being said the banding
> (tightness in my legs have been the worst part of my condition for more
> than 15 years!
> I will keep mall of you up to date on my progress. My neuro said that the
> Baclofin Pump could be used so much more often than it presently isI
> will let you know in a few weeks if it was worth the effort and the risk.
>
> All the best!
> Rob Pall in New Jersey
>

Re: [TMIC]

[fatimah shehadeh]

same here.
Tima


On Thu, May 16, 2013 at 2:17 PM, Janice Nichols  wrote:

>   Just sent email to Rob, and it came back unsendable.  Anyone else?
> Janice
>
>

Re: [TMIC] Re: Attention -The TMIC List

[fatimah . shehadeh]

Yes Sent from my BlackBerry 10 smartphone on the Verizon Wireless 4G LTE network.From: Tracey L. BlackSent: Thursday, May 2, 2013 5:19 PMTo: Kim Harrison; Cindy BudrowCc: Janice Nichols; tmic-list@eskimo.com; heyjude48...@aol.comSubject: RE: [TMIC] Re: Attention -The TMIC List







yes
 

Tracey L. Black
Certified Insurance Service Representative
Hockley & O'Donnell Insurance Agency
PO Box 3039, 132 Buford Avenue
Gettysburg, PA 17325
Phone: 717-334-6741, x 29
Fax:   717-334-3414
Office hours:   8:00 a.m. - 5:00 p.m.

My hours:   9:00 a.m. - 5:00 p.m.
  
 
P
Please consider the environment before printing
 
Insurance coverage cannot be bound or altered without confirmation from a licensed agent. If you do not hear from us within 1 business day, please re-contact us in case your information
 has not be retained. This message contains confidential information for use only by its intended recipients and may contain information that is proprietary, privileged, and protected under the law (including Gramm-Leach-Bliley and HIPAA/HITECH). If you are
 not the named addressee, you are hereby notified that any use of, distribution of, copying, or reliance upon the contents of this e-mail is strictly prohibited and may result in criminal or civil penalties. Please notify the sender immediately by e-mail if
 you have received this by mistake and delete this e-mail from your system. Thank you.

 


From: Kim Harrison [mailto:kimharrison7...@att.net]

Sent: Thursday, May 02, 2013 5:18 PM
To: Cindy Budrow
Cc: Janice Nichols; tmic-list@eskimo.com; heyjude48...@aol.com
Subject: Re: [TMIC] Re: Attention -The TMIC List


 

Yes

Sent from my iPhone



On May 2, 2013, at 5:07 PM, Cindy Budrow  wrote:



Yes

On May 2, 2013 4:46 PM, "Janice Nichols"  wrote:




Sorry I am late to respond.    Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part
 of us.




We do need to have some idea who is still getting our emails. Would you all please do so?


Janice


 



From:

heyjude48...@aol.com 


Sent: Tuesday, April 30, 2013 8:38 PM


To:

tmic-list@eskimo.com 


Subject: [TMIC] Re: Attention -The TMIC List




 




Hi  Everyone,


 


How are you doing tonight?  It's Jude Hoops and I am writing to let you know that
eskimo.com may be having a problem with our emails.  It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list.  It is because
 of their negligence that we may not get any more emails.


 


This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running.  I know the Quad list is going to another
 site, but I haven't heard anything about us.


 


Does anyone else know anything about this?  If you do will you please let me know.  I'm very worried about it.  I know that the list doesn't function the way that it used
 to but it is still important to me that we all stay in touch.


 


Oh, do any of you have the list of May Birthdays?  It usually comes around before the 1st and I haven't seen it yet for this month.


 


What do you think we should do?  (Again, I don't know if it applies to us too, or just the Quad list)


 


And one other thing, do any of you mind  if I use Pam's sign off of TIAD?  I just can't seem to help myself, it just keeps her alive in my heart.


 


TIAD,


Jude Hoops


Michigan











 

Re: [TMIC] AGE AND STATE

[fatimah shehadeh]

At 45, NJ

On Wed, Feb 13, 2013 at 10:29 AM, Susan Kleinz  wrote:

> Susan Kleinz, 36 and 57 - two major episodes - Phoenix, AZ
>
> On Feb 13, 2013, at 6:42 AM, Nikki Macleod wrote:
>
> Nikki - 23 - Durham, UK.
>
> Sent from my iPad
>
> On 13 Feb 2013, at 02:38, laura.eich...@gmail.com wrote:
>
> 40 years old. North Carolina, USA.
>
> On Tue, Feb 12, 2013 at 9:16 PM, Barbara H.  wrote:
>
>> I was 38 and near Atlanta, GA at the time TM struck.
>>
>> Barbara H.
>>
>> Sent from my iPhone
>>
>> On Feb 12, 2013, at 8:17 PM, "Janice Nichols" 
>> wrote:
>>
>>   I am requesting a quick answer from all of you, whether you just read
>> the posts or usually respond to comments, questions, etc. A long time
>> ago, I asked TM’ers to give me
>>
>> the age at which TM struck you.  Since then we have added a lot of
>> people to the group and I would really like another tally.Also, would
>> you mind giving the state you were
>>
>> living in when TM struck?I would add these up and figure out what the
>> average age TM struck and what state seems to be most prominent. Thank
>> you.
>>
>>
>> Janice – age 60 – Missouri
>>
>>
>
>
> --
> Laura
> www.photographybylauraann.com/blog
> www.facebook.com/PhotographyByLauraAnn  (please "like" my biz page)
>
>
>

Re: [TMIC]

[fatimah shehadeh]

Janice,

you can order it online at:

http://fruiteze.com

Fatimah


On Sun, Feb 3, 2013 at 12:34 AM, Gary Thomas wrote:

> **
> Janice,
> What is it and where is it found (store section)?
> Gary
>
> - Original Message -
> *From:* Janice Nichols 
> *To:* tmic 
> *Sent:* Sunday, February 03, 2013 12:25 AM
> *Subject:* [TMIC]
>
>  For those of you who have a constipation problem, I read tonite on FB
> that “Fruiteze” is supposed to be really good.
> Just thought I would throw that out there.
>
> Janice
>
>

Re: [TMIC] Traveling with TM

[fatimah shehadeh]

Nikki,

March will mark my second anniversary with TM. Last summer, I took a trip
to Disney. My kids were waiting for that vacation and I did not want to
deprive of the fun because of my fear of travel. I used my wheelchair.
Everything went smooth flying. The only pain was the TSA. The flight
attendants were very helpful and nice.

Plan to have fun and don't the fear holds you back

Fatimah


On Thu, Jan 31, 2013 at 5:16 PM, Nikki Macleod wrote:

> Thanks Janice I will let you all know how it goes. My biggest concern has
> been my outfit - typical woman.
> Nikki.
>
> Sent from my iPad
>
> On 31 Jan 2013, at 05:09, "Janice Nichols"  wrote:
>
> > Nikki,
> >
> > You need to list the fears that you have taking this trip.   Then put
> the answer down "on paper" that covers the situation if it should occur.
>  When you see the answers to your concerns, it will help and you
> > can pack accordingly. I have always heard from those in wheelchairs
> that you are well taken care of in airports.You just need to give them
> advanced notice of when you will be there and which terminal you
> > will need next.   Some of the others will probably weigh in on this that
> have flown.   I know this sounds simplistic, but it does make sense.
>  Good luck and let us know how everything went.
> > Janice
> >
> >
> >
> > -Original Message- From: Nikki Macleod
> > Sent: Wednesday, January 30, 2013 5:04 PM
> > To: Pat Voorheis
> > Cc: tmic-list@eskimo.com
> > Subject: Re: [TMIC] Traveling with TM
> >
> > Since TM hit me on the 15th Feb 2011 I have never travelled anywhere
> apart from different hospitals but I am invited to my sister-in-law's
> wedding on the 16th Feb and we are stopping overnight at the hotel so this
> is a big step especially as it'll only be TM's 2nd 'birthday' and I had a
> total meltdown last year. I am hoping this will keep me focused, make me a
> bit more confident and keep my head out my arse. I am terrified of getting
> on a plane now I'm in a wheelchair - I guess it's the fear of the unknown
> but we are eager to go abroad but I think I need to keep taking baby steps
> in the right direction. Thinking of a log cabin with a hot tub next (and
> that way we can take our dogs).
> > Nikki.
> >
> > Sent from my iPad
> >
> > On 29 Jan 2013, at 00:19, Pat Voorheis  wrote:
> >
> >> I haven't been to Nashville. I think the climate will be perfect in
> March.
> >> Anything you do to Kick TM behind you brings confidence.
> >>
> >> Patti
> >>
> >> On Jan 28, 2013, at 9:24 AM, "Janice Nichols" 
> wrote:
> >>
> >>> I am getting braver too - going to Nashville this March for 10 days.
> Still with some reservations, really looking forward to it.
> >>> Janice
> >>>
> >>>
> >>> -Original Message- From: Pat Voorheis
> >>> Sent: Monday, January 28, 2013 7:53 AM
> >>> To: tmic
> >>> Subject: [TMIC] Traveling with TM
> >>>
> >>> My husband and I have taken several trips since TM hit me nine years
> ago. Traveling started after I read a proverb.  "Hope deferred makes the
> heart sick."  I wrote in the margin of my Bible, It's time to say yes to
> Jim's Pacific Ocean Highway 101 trip.  The whole idea petrified me and the
> biggest what if was - what if TM hits again while I'm away from home. You
> could list your greatest ten fears and figure I had many of them too. We
> made as many adjustments as we could and flew from Michigan to Seattle,
> Washington, with small, small suitcases for a two week vacation. We drove
> from Seattle to San Diego, California.  Then flew back home.
> >>>
> >>> I didn't have a TM relapse. I didn't loose my meds.  I didn't die from
> riding so long. We have great memories of that trip.
> >>>
> >>> Another summer we took our boat on a week's vacation. I didn't fall
> overboard, but We had to take my brother so he could take over my usual
> duties.  Darn TM.
> >>>
> >>> We had to admit that TM changed me and our finances too much to be
> able to maintain our boat so we sold it (at a loss). Darn TM.
> >>>
> >>> We waited a year and bought a used motor home and set out on a three
> week cross country trip to the Grand Canyon and Yellowstone National Park.
> I didn't fall off a cliff or get eaten by a grizzly
> >>>
> >>> We've taken other trips since and each one has built confidence. Yes
> they were tiring. Yes I was in pain. I wished to be in my own bed, didn't
> want to ride one more mile, or walk one more step. However, until writing
> this that's not what I remembered about those trips. They were good times,
> with good memories and lots of pictures to prove it.
> >>>
> >>> A lot of TMers have traveled and helped me prepare.  I'm glad we did
> it!
> >>>
> >>> Patti - Michigan
> >>>
> >>>
> >>>
> >>>
> >>
> >
> >
> >
>
>

Re: [TMIC] Face book

[fatimah shehadeh]

Hi,

I am new to the list. My name is Tima and I was diagnosed with TM in March
2011.
I live in Freehold, NJ with my husband and 2 kids, age 8 and 7.
I don't trust Facebook, especially sharing something like what I go through
with TM.
in my case I woke up one day normal, and suddenly I had sharp back pain and
within half hour, I was paralyzed waist down.
I need to use braces and walker for short distance walks. I finally, got my
car converted to hand control and that gave me back some freedom and
independence.
I visit the Myelitis forum on a regular basis.
Prior to my diagnosis, I was a product manager for a telecom company in
Northern Jersey. My company got acquired back in July and I was laid off.
I look forward to know you and maybe meet some of you in NJ.

Tima


On Tue, Jan 15, 2013 at 3:57 PM, Dalton Garis  wrote:

> Tough decision, especially, if like me, you live in New York City;
>
> Because the likelihood of one of the-say-500-1,000 persons you brush by
> does not have the flu is about zero.  So, I assign one hand to touching
> things and never bring that hand to my face, the off-hand, call it.  With
> the other hand I also do not touch the eyes, the nose or the mouth until
> after washing.  It takes a little practice, but I am used to it now.  Also,
> I try not to touch handles except with the off-hand, etc., and all this has
> kept me free of the flu for years now, without getting a flu shot.
>
> And now, I would never risk a flu shot since it might alter my inner
> balance or mess with the nervous system and start this TM-thing all over
> again.  I'd rather take to bed for a while and get better, rather than risk
> having TM again and having to take to bed for good!
>
> Also, have you ever found yourself breathing in someone's smoke when
> following right behind?  Well, even though you can't see it, you are still
> obviously breathing in their expelled breath, even when it is not indicated
> by the tracer tobacco smoke.
>
> Dg
>
> Dalton Garis
> Flushing, Queens
> New York, USA
> Mobile: 718-838-0437
>
> From: Gary Thomas 
> Date: Tuesday, 15 January 2013 12:15 PM
> To: "Butcher, Bernie (S&FS)" , Linda Egli <
> le...@sbcglobal.net>, 
>
> Subject: Re: [TMIC] Face book
> Resent-From: 
> Resent-Date: Tue, 15 Jan 2013 09:15:22 -0800
>
> It's nice to read all the comments. We haven't had a lot of conversation.
> I get on Facebook a little but not with the TM group.
> I think I will still take my chances and not get the flu shot. The flu was
> not fun, but still don't want to take a chance on another TM episode. I was
> very fortunate in that with the onset of TM I have a balance problem but
> can still walk and I do have other issues (fatigue, mild bathroom issues,
> etc.) but I still work, keep up the house and get by with taking it a day
> at a time but NOT like some others in wheelchairs and very much unable to
> function as they once did. So, I may keep on and just realize I went all
> these years without a shot and without flu until this season.
>
> Gary in MI
>
> - Original Message -
> *From:* Butcher, Bernie (S&FS) 
> *To:* Linda Egli  ; tmic-list@eskimo.com
> *Sent:* Tuesday, January 15, 2013 11:54 AM
> *Subject:* RE: [TMIC] Face book
>
>  I agree. I was diagnosed with TM in 2002 and MS in 2008. I think it was
> MS all along. I stopped getting the flu shot in 2002, and no flu. (just
> lucky I guess). I had a transplant in 1993, and my immune system is knocked
> down by the anti-rejection meds. My doc and my neuro say to get the shot,
> but I don?t.  it?s my belief that they just don?t know, they don?t really
> know what causes TM, they don?t know what causes MS, and they don?t really
> know what effect the flu shot has with my condition. 
>
> So, I?ll take my chances. I?m taking Copaxone injections for MS.
>
> ** **
>
> *BERNARD BUTCHER*
>
> *Honeywell Engineering*
>
> *516-577-5868*
>
> *From:* Linda Egli [mailto:le...@sbcglobal.net ]
> *Sent:* Tuesday, January 15, 2013 11:10 AM
> *To:* tmic-list@eskimo.com
> *Subject:* Re: [TMIC] Face book
>
> ** **
>
> I have had TM for 9 years , & was told by my neurologist to never get
> another flu shot or any other type of  immunization (ex: tetanus or chicken
> pox).  He thought the flu shot was what precipitated my TM.  I worry about
> catching the flu, but everyone knows not to come around me if they have any
> type of illness.  I also pretty much stay at home & avoid crowds in the
> winter, so far no flu.  I agree with Gary.  I got a bad cold a few months
> ago & it about did me in.  I can't imagine what the flu would do.  I miss
> the old group on TM, but I just don't trust Facebook.  The TMIC list is my
> contact with other TMers. Nice to see some conversation on this site.
>
> Linda E. in East Texas
>
> ** **
>   --
>
> *From:* Gary Thomas 
> *To:* Transverse Myelitis list 
> *Sent:* Tuesday, January 15, 2013 8:25 AM
> *Subject:* Re: [TMIC] Face book
>
> ** **
>
> I used t