|This MS Support page is information I've accumulated since my diagnosis in 1998.
I became the local Tullahoma, TN contact for MS Self Help Support quite by accident, and now that I've
relocated to the Austin, TX area, I'm back to being just another person struggling with MS.
But I still feel the need to make sure there is a way to connect!
So I'll share what I know and what I learn here. A lot of the info on this page is from the National MS Society.
MS is thought to be an autoimmune disease that affects
the central nervous system (CNS). The CNS consists of
the brain, spinal cord, and the optic nerves. Surrounding
and protecting the nerve fibers of the CNS is a fatty tissue
called myelin, which helps nerve fibers conduct electrical
In MS, myelin is lost in multiple areas, leaving scar tissue
called sclerosis. These damaged areas are also known as
plaques or lesions. Sometimes the nerve fiber itself is
damaged or broken.
Myelin not only protects nerve fibers, but makes their job
possible. When myelin or the nerve fiber is destroyed or
damaged, the ability of the nerves to conduct electrical
impulses to and from the brain is disrupted, and this
produces the various symptoms of MS.
|If you'd be interested in
learning more about what
we with MS deal with
every day, here's a
really interesting page
on the NMSS site. It's
called "The Faces of MS"
|My personal story is under
"Facing MS with Attitude"
For more infomation on MS and it's
causes, symptoms and treatments, visit
the NMSS website at the link above.
|A Few (Hopefully) Helpful Tidbits I've Collected...
|These little bits and pieces are things that I've found out myself in my trials and tribulations with MS or suggestions from other MS patients I've met. I know for me, if I'd known some of this stuff before things
started happening, it might not have been so scary, so I figure if I share what I know... maybe it won't be so scary for somebody else out there.
Just remember! Everybody's different! That's the weirdness of MS. No two people seem to react the same, although we all tend to go through some of the same weirdnesses... :)
So... Take it all with a grain of salt!! And always check with your own doctor if you're having new problems... your doctor needs to know what's happening to you in order to track any progressions or remissions.
When you first start taking shots, take them before bedtime, so you can sleep through most of the side
effects. In the beginning, I slept through most of them. The first month I have to say with Avonex, the side
effect DID last about the 24 hours they advertised. But then I slept through most of them and only had to
deal with a few hours the next day of feeling really crummy. Eventually, the effects subside. Now I'm taking
Rebif, and when I take the shots at night, even really late, I wake up feeling pretty good!
Take your TylenolPM or whatever you take for your pain about 20 minutes before your shot. That helps not
only with the pain of the shot but helps with the first effects too.
In the beginning, the effects (at least for me) are like major flu-like symptoms: skin hurts, you feel hot like
you have chills and a fever, & you sweat as if you have a fever too. I slept with a hoodie on for the first few
months because I would wake up drenched and I wouldn't want to catch a cold. Luckily, that went away
After you have been taking the shots for an extended period of time, shot sites become a problem. It's a
good idea to switch sites as often as you can. For example, I take 3 shots a week. I have 6 sites that I
rotate every 2 weeks. My MS nurses aid helped me figure out the best way to do that: 1 wk, Tue, Rthigh,
Thurs, Rbutt, Sat, Rstomach, 2nd wk, Tue, Lthigh, Thurs, Lbutt, Sat, Lstomach and so on. It works really
well, because by the time the sites come back around again, any redness that may have been there is gone!
I wish someone would have told me this one! There is something that those who have MS call "The MS
Hug". I don't know what the medical reason is for it other than some spasticity in your body, but It's a
feeling you get like you have a belt wrapped around you -- either through your chest or around your
waist, even through your abdomen or pelvis. Sometimes it's just a little tight. Sometimes it feels like an
elephant is sitting on you! It comes and goes for those of us with relapsing/remitting MS, so when this
happens with an exascerbation, don't panic! It feels pretty bad, and yes! It's very scary!! I had 3 "belts"
with this last attack! But it's not forever, and it will probably subside after a while... like with everything
MS, you have to wait and see. Mine went away except for a little tiny band in my back, which I don't even
know is there unless I sneeze!
This last time, I had some cognitive problems with my little attack. I couldn't think straight. Things were
coming to me slowly, and I couldn't get my words in order in my head before I could spit them out of my
mouth! Talk about scary!! I was petrified that I wouldn't be able to continue to function. But my brilliant
sister came up with a great little solution for me. She told me to start playing games! And it worked!! I
first started playing hand/eye coordination puzzle games, like putting the blocks in the right place. At first I
couldn't do them. But then I got faster and faster until I was winning them. Then I started playing card
games - different types of solitares. And finally word games. They really, really helped. I still have some
slight problems, but I'm so much better now. I really attribute my improvement to the puzzles and games!!
Try 'em!! Besides -- they're fun!!!
I had people giving me a hard time about using a cane to walk with, saying things like, "If you keep
depending on the cane, you'll never get rid of it..." and "...that's just a crutch, you can walk without it."
Well, the fact is, I CAN walk without my cane, but I can also FALL without my cane too. One of my first
neurologists told me not to pay attention to what people said to me. I know if I need the cane for my
balance. I know how many times that cane has saved me from falling down when my knee gives out or my
back just gives way. And a broken ankle or broken leg from falling down will be MUCH harder to drag
around in the long run than worrying about walking around with your cane! PLUS! He also told me --
ANYTHING that will save your ENERGY -- DO IT! The whole game is to conserve your energy, because
you need every bit you can get to get you through the day! So if you need a cane, don't worry about it.
I don't anymore! :)
|If you have any experiences or tips you would like to share on this
page, please feel free to contact me at email@example.com.
Include your name and email address and I'll post them
(unless you would rather be anonymous... we can do that too! ;)
Other Good Info from the NMSS website and/or
MidSo-chapter or other helpful places:
|If you have trouble reading due to any optic nerve problems you may be experiencing, there is a way to continue to
enjoy books! Contact Books for the Blind & Handicapped at 1-800-342-3308.
Also, another helpful phone number and website for questions about MS: 1-800-LEARNMS, which is the
Multiple Sclerosis Association of America.
(Thanks to Vicki and Ken for these two tips too!)
This is the link to Clay Walker's website,
that hunky :) country music star who's
walking the path like the rest of us! He has
the most beautiful leather band of support
that he sells from his website as well as lots
of great info and ways to help! Check it out!
And speaking of canes...
I have had several requests of where to find specialty canes. Here are a few websites I have found:
And we have it on very good advise that there's a place on the town square in Fayetteville, TN that has some very
nice and unique walking sticks and canes at reasonable rates... =] (We LOVE your cane, Vicki!!!!!) :)
April 2007 -- Multiple Sclerosis Coalition Established
In order to facilitate an international movement which will lead to a world free of multiple sclerosis, it is essential
for all those impacted by the effects of MS to join together. This has led to the recent establishment of the
Multiple Sclerosis Coalition, an affiliation of independent MS organizations dedicated to improving the
quality of life for all those affected by multiple sclerosis.
The Coalition's mission is to increase opportunities for collaboration among the network of independent MS
organizations and through this collaboration enhance MS education, advocacy and overall organizational
In addition to the Society, core membership in the MS Coalition includes:
The Consortium of Multiple Sclerosis Centers
Multiple Sclerosis Association of America
Multiple Sclerosis Foundation
Accelerated Cure Project for Multiple Sclerosis
Montgomery Multiple Sclerosis Center
MS Helping Hands
Valdosta MS Support Group
Vision Works Foundation
To learn more about the MS Coalition and the special activities and programs of its member organizations,
|Meeting Minutes from the Tullahoma, TN meetings...
|To read any minutes from the years I was in Tullahoma, click on this ARCHIVES link. Not that this is "helpful" info,
but we did have a wonderful time sharing with and caring for each others needs and experiences...
H O P E
Stop MS before it
Thanks for the visit!
Here's a link to the Demos Publishing Website... they have many
useful, interesting books about multiple sclerosis... including this
one about Living With Progressive MS... check it out....
Other Helpful Links
I've Come Across...
All Access Mobility in Tullahoma, 931-454-0055. They can help you find out about obtaining
transportation if you're in need of handicapped transport options. GREAT staff, and right here in
town! :) Or check out the website! Lots of great info!!!
LifeAid Medical Equipment LLC
1241 South Jackson Street
Tullahoma, Tennessee 37388
Toll Free: 1-800-279-0341
The folks are very helpful and, tho' you sometimes have to wait a while for orders to come
in, you can always get what you want, and in a friendly, neighborly way! :)
The Ribbon Mosaic -- Supportive Services and Information for families
undergoing short term medical treatments and recovery for critical illness.
This is a brand new organization, with some amazing ideas and potential to help...
check it out... and if you are throwing support anywhere -- give them a thought or
Sharing a part of an email I exchanged with Angie, one of the founders of The Ribbon Mosaic. These
are the kinds of issues they are trying to address and fix.... thought it was interesting and the walker info was worth
... You can keyword U-Step and get information on it. My husband's uncle could not manage the traditional walker. He would bend over
and the walker would be ahead of him. It was unsteady managing between walker and chair or bed. Since he could not manage the
walker, he was going to be confined permanently to the wheelchair. I found the U-Step online - and located one at our local medical
supply store. It was $625 - cannot be rented and Medicare will not pick it up. Fortunately, he was in a position to pay for it. It has seven
wheels on it - will go over cracks in sidewalks and glides over the space between floor and elevator. Turns on a dime, so there is no
lifting or shifting - it moves with you easily. You have to squeeze the handles in order to make it move - and when you release it
automatically brakes - allowing assistance in standing and moving from walker to chair or bed. The U-Step is designed so you are
walking inside the U - forcing you to stand up straighter. The width fits your body, so you do not have all this space on each side of you,
making the handles easier to grip. It is adjustable. Comes with a seat/basket and the whole unit folds like a stroller so you can put it in a
car. When I brought the U-Step into the physical therapy room, I asked them to try it - if it worked great - if it didn't - didn't lose anything.
(The medical supply place said as long as it didn't show any use and still had the tags on it, that I could test it and bring it back if it didn't
work - but we have a friend with advanced Parkinsons and would have given it to him.) They adjusted the U-Step to his size and he literally
took off on it - with ease. Because of it, he was able to get into his own apartment and be more independent - easier taking him out, too.
The physical therapist said there were at least a dozen residents that were wheelchair bound - unable to walk with the traditional walker,
but would be able to walk again if they had a U-Step. There is hope. It's like a Hummer - just goes over all kinds of flooring, ground,
cracks, etc., with tremendous ease, but will not get away from you. You cannot slump and get bent over - you are instantly standing
straight up. If you can find one - please test it on your Aunt. And pass the word to others. I had never heard of the U-Step - was doing
research on walkers and it came up - specific for those with balance issues. There is a laser attachment for MS and Parkinsons people,
so they can judge walls and doors.
What bothers me is the price and Medicare not willing to pay even part of it - something The Ribbon Mosaic will address as we go along.
|Click on the
for more info
MS Magnets -- and other cool stuff to show your
support! And yes! The official color of the MS
Movement - ORANGE! :) This site is through the
MSF, and you can get support merchandise.
MS and Divorce Support - a unique place where these two maladies are handled....
Montel Williams MS Foundation - tons of great info and ways to help...
Anyone interested in getting Teri Garr's great book
"Speedbumps" - here's a link!
Great MS fact sheet from "Squiggy" :) -- David L. Lander gives us info and insight.
Also links to get his book, "Fall Down Laughing: How Squiggy Caught Multiple Sclerosis
and Didn't Tell Nobody"
The Heuga Center for Multiple
Sclerosis - This link page on this site
has lots of great connections.....
|I have had several requests for information on Prescription Assistance. I contacted
Midsouth and they sent me this contact list: phone numbers and websites where you
can try to find help! I'm adding it here to the page as thumbnail documents.
|These are other links to sites I've found useful. If you know of websites that are reputable,
local or otherwise, and that have useful and current information that you'd like to see on
this page, please send me and email and let me know. I'll be happy to post a link!
I'll keep adding links as I find them or as YOU bring them to my attention! :)
|And now... some Poetry and Art... a la MS
Let's call this section...
Manifestations & Stanzas
I thought we should have a place to have our creative thoughts and efforts displayed and shared. So
many of us are closet writers, artists, singers, etc., and we often forget that even though we have MS, it
sure doesn't stop us from doing what we love to do -- not if we can help it! :) So here is where we can
share some of that experience with our companions in the battle! I've moved my pertinent pieces
from my Poetry and Art Pages here.
See if you can't relate to anything that follows. :)
(And if you have anything you'd like to share, please feel free to send it to me to post!)
How does the Energizer bunny do it?
Keep going and going and going?
Keep the beat with his little bunny feet
Always going, never slowing
I wish I could have just a touch of that jazz
And feel my fatigue fade away with pizazz
For behind sunglass-shades I hope I’d still have
A wink, and a twinkling eye
And laughter all-knowing, always showing
To keep going and going and going and going….
|The Ideal Arrangement
Not knowing what to expect is a killer!
To not know what’s coming or around the bend;
Feeling unsure and untethered
Leaves life floating in flux,
And changeable as the weather.
You can’t make plans – not where, not when –
A frustrating state of affairs
For someone so used to being on their own.
It feels out of control
Just to depend
On someone else.
It’s like mounting an insurmountable
Flight of stairs.
Climbing to where?
How high is up?
You need to adopt an accepting temperament.
Because despite how it feels
You know in your heart
This is the ideal arrangement…
You can help when you can,
And there’s help if you need it
It's just best to always agree.
Stealing life moments behind everyone’s back
Just to have some time that feels free
Makes whatever happiness you seek
Seem sorted and somehow unallowably greedy.
So to survive this transition
This mission impossible,
I think I’ve found an acceptable niche:
Do as I’m told.
Don’t rock the boat.
Learning to simplify is the basic trick.
Because being uncomplicated is to be care free.
And isn’t that what we all strive to be?
|Angels of Mercy
Angels of Mercy
Guardians of Care
Soldiers of the Unit
The ones you want near
When you’re hurting
And don’t know how you’ll fare
It’s Angels of Mercy –
Nurses are There
I dedicate this to all the men and women in
the profession of nursing, but especially to
the staff on the Unit at the Bedford County
Medical Center in Shelbyville, TN, who took
such good care of me during my stay there…
Thanks for all the selfless, hard work you do!
This one is for all my fellow MS
sufferers.... :) who I KNOW can relate
Falling down weary and feeling browbeat
Accomplishing nothing when vigor retreats
Too tired to focus on what’s coming next
Indiscriminate weakness makes planning complex
Giving in to the weight of a draining despondency
Undermines the positive, leaving me crabby!
Exhausted and envious of energetic people – like the someone I used to be
This represents the rips in the memories of a person's mind
who has alzheimers... very sad. And as difficult as it is for the
people around them to deal with, imagine how horrendous and
maddening it is for the person it's happening to... Because MS
has so many cognitive symptoms, we can relate very well to
Alzheimers patients and even take some of their drugs... We're
all connected... immune system diseaseses...
What would any of us do without those who love and care for us? They need help too! Here is a great list of resources from the Spring 2009 issue of Momentum
magazine, published by the National MS Society and compiled by staff writers Greta Herron and Patricia Wadsley.
Just like those of us struggling with MS -- don't hesitate to ask for help when you need it! Because it's out there! :)
An MS Navigator is on hand at the Society Chaptner nearest you, to help family caregivers find appropriate local resources, including support groups,
social services, respite care,a nd other volutary organizations. Call 1-800-344-4867.
The Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends who
provide long-term care at home. FCA offers a wide range of national, state and local programs. caregiver.org
The Well Spouse Association supports spousal caregivers. Services include a quarterly newsletter, online mentorships, Web forums, local peer groups
and more. wellspouse.org
Lotsa Helping Hands is a free national online service for family and friends to use as a personal clearning house for an individual's care network. One
volunteer does the work of posting what needs to be done for that person, including transportation and schedules of coverage. The volunteer also sets up
automatic reminder e-mails and updates for the network of friends and family members. lotsahelpinghands.com
National Alliance for Caregiving is a national advocacy organization that conducts research, develops policies and programs, and works to strengthen
state and local caregiving coalitions. It publishes some helpful brochures for family caregivers and maintains the Family Care Resource Center, which as
reviews and ratings for hundreds of books, videos, Web sites and other materials on caregiving. caregiving.org
National Caregivers Library is a Web-based collection containing hundreds of articles, forms, checklists, tools and links to topic-specific resources.
Disabilityinfo.gov is an award-winning federal government site designed as a source of information on a host of disabiilty-related programs and
services. The site includes a state and local resources map for finding disability-related information in specific areas.
Caring Connections provides free resources, information and motivation for learning about end-of-life issues. The site includes links to each state's
advance directives requirements and to the National Hospice Palliation Care Organization for more resources on planning, decision making, grief,
hospice care, and other end-of-life matters. caringinfo.org
Caring Bridge is a free site that updates a network of personal supporters about an indivisual's ongoing health status, treatments, therapies, and
recovery. A family member can keep friends and relatives invormed during difficult times and in return they can leave personal guestbook
American Association of Retired People (AARP) has a free caregiving planner and a number of helpful tools for calculating needs and
Caring Today is a bi-monthly magazine and Web site providing practical advice about home care for many chronic diseases and conditions.
Subscriptions start at $15.95/year if you sign up on the Web site. caringtoday.com
And On the Newsstand...
Today's Caregiver magazine published bimonthly by Caregivers Media Group, provides information, support and guidance about many diseases
and coditions to professional and family caregivers. $18/year. caregiver.com
Here is a poem by H.C. Jensen
that teaches a good lesson.
WHY GOD PUT ME HERE
I don't know how to say it
But somehow it seems to me,
That maybe we are stationed where
God wants us to be.
That little place I'm filling is
The reason for my birth
And just to do the work I do,
God sent me down to earth.
If God had wanted otherwise
I reckon He'd have made,
Me just a little different
Of a worse or better grade.
And since God knows and understands
All things of land and sea,
I fancy that He placed me here
Just where He wanted me.
Sometimes I get to thinking
As my labors I review,
That I should like a higher plane
With greater things to do.
But I come to the conclusion
when the envying is stilled,
That the post to which God sent me
Is the one he wanted filled.
So I plod along and struggle
In the hope when day is through,
That I'm really necessary
To the things God wants to do.
And there isn't any service
I can give which I should scorn,
For it may be just the reason
God allowed that I be born.
|This was sent to us by our friend Marie Parrish...
Having trouble keeping things straight in your head? Maybe NASA can help! Based on NASA technology and
designed especially for people with cognitive problems, the PEAT handheld personalized scheduler from Attention
Control Systems, Inc. offers more flexibility than a typical PDA. For more info, check this website.
MS and Me
by Kathy Martin©2006
Like a rabbit in a cage
In meds and other obligations
To do the work I’ve always done
Of ever having a place to call my own
For everything I can’t control
When the doctor says, “We just don’t know.”
I feel Trapped
But I’ve found some friends inside with me
We’re wrapped up
In meds and meetings and other things we find for free
To resist signing up for one more class
Of holding yoga poses, so we fall on our ass
Of laughing about our wobbly knees
But we keep trying and smiling, pretty please
We may be trapped
Like rabbits in a cage
But we’re making sure we’ve got plenty of carrots for the stay!
Care to help with a better quality of life
when pain and other symptoms are
hard to handle... Check out this site.
|Here is a wonderful Drug
List you can use to keep
track of all your medications
Click to return to the top of the page.