MS Support
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| Well, I figured, if I'm going to have another page in this website, I should really have something about MS. Guess you could say I'm an expert! Although, I'm learning every day!! And now as the local Tullahoma contact for MS Self Help Support, I felt the need to make sure there was a way to connect! So I'll share what I know and what I'm learning here. A lot of the info on this page is from the National MS Society. I have multiple links to their website, but if you are interested in more information, please contact me, Meredith Perdue, or Beth Smith at the Midsouth Chapter. If you have any insights you'd like to share, please feel free to contact me. |
What is Multiple
Sclerosis?
Sclerosis?
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 impulses.
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.
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 impulses.
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.
causes, symptoms and treatments, visit
the NMSS website at the link above.
Support Now! Every 2nd Monday of the Month!
If you live in Tullahoma or the surrounding area and would be interested in attending a Self Help Group Meeting
for MS, we hold them every second Monday of the month at 11AM, whereever we can find a room and a
good deal for lunch! Our new place of choice is Ming's Buffet on Jackston Street in Tullahoma, across from
CVS, next door to The Tullahoma Bank. It's a Chinese Buffet, but they also have a wide range of American food
to choose from too! The food is good, and the price is great! :)
We're a small but committed group, and willing to share our collective knowledge to help you find answers if you
need them. Call me at 931-455-3568 or just show up!
We are sponsored by the Mid South Chapter, Nashville of the NMSS.
for MS, we hold them every second Monday of the month at 11AM, whereever we can find a room and a
good deal for lunch! Our new place of choice is Ming's Buffet on Jackston Street in Tullahoma, across from
CVS, next door to The Tullahoma Bank. It's a Chinese Buffet, but they also have a wide range of American food
to choose from too! The food is good, and the price is great! :)
We're a small but committed group, and willing to share our collective knowledge to help you find answers if you
need them. Call me at 931-455-3568 or just show up!
We are sponsored by the Mid South Chapter, Nashville of the NMSS.
And Now... A Few
Helpful Tidbits I've
Started to Collect....
Helpful Tidbits I've
Started to Collect....
| 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!
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.
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
pretty soon!
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
pretty soon!
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!
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!
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!!!
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! :)
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 kmmartin_7@yahoo.com. Include your name and email address and I'll post them (unless you would rather be anonymous... we can do that too! ;) |
| Welcome! |
Other Good Info from the NMSS website and/or MidSo-chapter or
other helpful places:
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!
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!!!!!) :)
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
efficiencies.
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
MS World
Valdosta MS Support Group
Vision Works Foundation
To learn more about the MS Coalition and the special activities and programs of its member organizations,
visit: http://www.multiplesclerosiscoalition.org/.
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
efficiencies.
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
MS World
Valdosta MS Support Group
Vision Works Foundation
To learn more about the MS Coalition and the special activities and programs of its member organizations,
visit: http://www.multiplesclerosiscoalition.org/.
Meeting Minutes... sort of.... =)
Posted here is the basic idea of what we talked about at the meeting (what you missed!)... I will
TRY to be good about this, but I make no promises in stone! :) I have the current year's minutes
on this page. To read any minutes from previous years, click on the ARCHIVES link.
TRY to be good about this, but I make no promises in stone! :) I have the current year's minutes
on this page. To read any minutes from previous years, click on the ARCHIVES link.
Miscellaneous...
H O P E
| Join the movement! Stop MS before it Stops Us! Thanks for the visit! |
Handicapped Housing Alternatives
As I find out about housing options in the Tullahoma and surrounding areas, I will post them
here. If you hear of anything, please let me know! :)
As I find out about housing options in the Tullahoma and surrounding areas, I will post them
here. If you hear of anything, please let me know! :)
| Affordable living for the handicapped... One bedroom Apts available for the handicapped of any age and rent is according to income. Generally its 30% of your income, minus medical bills and etc. That includes, all electric, water, garbage P/U. Phone and cable are NOT included. Fayetteville Square 2000 West College Street Suite 119 Fayetteville, TN. 37334 931-433-0339 A waiting list is required as they only have 5 handicapped apts available. Also a background check is required. Average waiting time is 1-2 years. |
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....
useful, interesting books about multiple sclerosis... including this
one about Living With Progressive MS... check it out....
Other Helpful Links
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!!!
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
Phone: 1-931-455-0111
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! :)
1241 South Jackson Street
Tullahoma, Tennessee 37388
Phone: 1-931-455-0111
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
two! :)
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
two! :)
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 sharing.... :)
... 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.
are the kinds of issues they are trying to address and fix.... thought it was interesting and the walker
info was worth sharing.... :)
... 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 U-Step Walker 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.
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!
"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"
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.....
Sclerosis - This link page on this site
has lots of great connections.....
| I have had several requests for information on Prescription Assistance. I contacted Meredith at Midsouth and she sent me the contact list: phone numbers and websites where you can try to find help! I'm adding it here to the page as thumbnail documents. If you have any trouble reading it, please contact me and I can email it to you! :) |
| Remember... if there's any info you're looking for, there's a good chance we can get it for you through the NMSS or MSF. Just ask! MS is ever changing.... and we all learn as we go! |
| 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! Thanks!! |
I'll keep adding links as I find them or as YOU bring them to my attention! :)
| The Clyde Rooker Center 209C Buffalo Valley Drive Shelbyville, TN PHONE: 685-4590 New senior, disabled communities previewed Monday, July 28, 2008 By Sadie Fowler Two dozen Bedford county citizens made a trip to Buffalo Valley Drive Thursday morning to see the unveiling of two new housing communities that will open soon. "This will benefit both the city and the county," said Jim Bailey, property manager for Buffalo Valley, Inc. properties, the sponsoring agent. "I am looking forward to extending our facilities for the elderly in this area. We're very proud." The Chamber of Commerce hosted a ribbon-cutting for the Clyde Rooker Senior Community as well as its neighbor, the Dr. Tom Richards Center, to inform the public that applications for both facilities are currently being accepted. Jerry T. Risner, executive director of Buffalo Valley, Inc., said the one-bedroom units, where rent is based on income, are now complete. Risner said he's hoping to have residents begin moving in by mid-August. The Clyde Rooker Center, which features 14 units, is designed for people over 62, and two people may live in a unit. "The average rent paid for a unit here will be in the range of $190 per month," he said, explaining applicants will have to go through a stringent background check to qualify for the housing. "The utilities are paid for the tenants, the grounds are kept for them and we will arrange any services through the senior center, like transportation, through the local home health's for services they might offer." Clyde Rooker, whom the senior community was named after, was a long-standing board member of Buffalo Valley, Inc. "He was dedicated to BVI and was instrumental in helping with all banking matters with BVI," said Risner. "He was a great cheerleader for all BVI staff with a quick smile, a good joke and an encouraging word ... we miss him." The second center unveiled Thursday was the Dr. Tom Richards Center for disabled individuals. This community, adjacent to the senior community, also features 14 units, with about 10 units currently available. Rent for this center is also based on income and, like the senior community, units are not furnished. There are, however, free laundry facilities available for residents of both facilities. "Dr. Tom Richards was a local doctor here for many years," said Risner. "He treated many patients over the years, some that had no funds to pay him, but he treated them anyway." Richards also served on the BVI board for nearly 30 years and was instrumental in the medical aspects of the BVI program, a program that deals with housing, job training, alcohol and drug treatment. "I want to thank County Mayor Eugene Ray and City Mayor Wallace Cartwright for their assistance through the construction of these projects," said Risner. "I want to thank HUD for the funding of these facilities, and the Chamber of Commerce for their assistance in getting the open house ready for today." Both communities are located at 209C Buffalo Valley Drive, which is off West Lane Street. For more information, contact 685-4590. © Copyright 2008, Shelbyville Times-Gazette |
| 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!) |
Keep Going
Kathy Martin©2006
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….
Kathy Martin©2006
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 Kathy Martin©2007 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 Kathy Martin©2007 Angels of Mercy Guardians of Care Soldiers of the Unit The ones you want near When you’re hurting And scared 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
sufferers.... :) who I KNOW can relate
F
Falling down weary and feeling browbeat
A
Accomplishing nothing when vigor retreats
T
Too tired to focus on what’s coming next
I
Indiscriminate weakness makes planning complex
G
Giving in to the weight of a draining despondency
U
Undermines the positive, leaving me crabby!
E
Exhausted and envious of energetic people – like the someone I used to be
Falling down weary and feeling browbeat
A
Accomplishing nothing when vigor retreats
T
Too tired to focus on what’s coming next
I
Indiscriminate weakness makes planning complex
G
Giving in to the weight of a draining despondency
U
Undermines the positive, leaving me crabby!
E
Exhausted and envious of energetic people – like the someone I used to be
| Altzheimers |
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...
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...
02/09/09 - Ok - Ok - I'm a little late in updating this page!!! I'm very sorry about that. But we have had some good
meetings, albeit small meetings -- and we've met some new people, so we're still hanging in there! :)
December was good in that we had a little holiday "party" as it were for those who attended.
January was great in that we met a new member from right here in Tullahoma. She asked us about LDN (low dose
netraxone), which turns out is a treatment in tandem with your normal shot treatment. Ask your doctor if you are
wondering if it would be beneficial for you. Ken, Vicki and I went to the Annual Meeting in Brentwood at the end of the
month and asked the question of Dr. Moses, who was one of the speakers. Our information had been that you could
only take LDN if you were taking Copaxone. However, Dr. Moses is treating patients on other meds as well. So ask
your doctor if it might help you.
February was just me and Vicki and Ken... we had fun with the Valentines!!! ;)
We will hold our March meeting on Monday, March 9th. We haven't decided yet where we will have the meeting. Ken
and Vicki have graciously invited us to their house again this year. We jokingly refer to it as our meeting annex! :)
But we will make a decision soon as to where March's meeting will be, and I will post the meeting place here on the site.
If we go to Mulberry, we'll arrange either a ride or a convoy! :) Thanks, and hope to see you soon! :) :) :)
meetings, albeit small meetings -- and we've met some new people, so we're still hanging in there! :)
December was good in that we had a little holiday "party" as it were for those who attended.
January was great in that we met a new member from right here in Tullahoma. She asked us about LDN (low dose
netraxone), which turns out is a treatment in tandem with your normal shot treatment. Ask your doctor if you are
wondering if it would be beneficial for you. Ken, Vicki and I went to the Annual Meeting in Brentwood at the end of the
month and asked the question of Dr. Moses, who was one of the speakers. Our information had been that you could
only take LDN if you were taking Copaxone. However, Dr. Moses is treating patients on other meds as well. So ask
your doctor if it might help you.
February was just me and Vicki and Ken... we had fun with the Valentines!!! ;)
We will hold our March meeting on Monday, March 9th. We haven't decided yet where we will have the meeting. Ken
and Vicki have graciously invited us to their house again this year. We jokingly refer to it as our meeting annex! :)
But we will make a decision soon as to where March's meeting will be, and I will post the meeting place here on the site.
If we go to Mulberry, we'll arrange either a ride or a convoy! :) Thanks, and hope to see you soon! :) :) :)
Here's Jane and Ken and Vicki from
one of our meetings at the Western
Sizzlin'... the beginning of our photo
album for the Tullahoma Self Help
Group! :) :) :) Let's get some more!!!!
one of our meetings at the Western
Sizzlin'... the beginning of our photo
album for the Tullahoma Self Help
Group! :) :) :) Let's get some more!!!!
So glad our Jane girl is doing much better!
Caregiver Assistance
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! :)
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.
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
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
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
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
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. www.caregiverslibrary.org
forms, checklists, tools and links to topic-specific resources. www.caregiverslibrary.org
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.
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
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 messages. caringbridge.org
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 messages. caringbridge.org
American Association of Retired People (AARP) has a free caregiving planner and a
number of helpful tools for calculating needs and resources. AARP.org/family/caregiving
number of helpful tools for calculating needs and resources. AARP.org/family/caregiving
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
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
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.
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... |
Brainaid.com
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.
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.
| Trapped or MS and Me by Kathy Martin©2006 Trapped Like a rabbit in a cage Wrapped up In meds and other obligations Unable To do the work I’ve always done Incapable Of ever having a place to call my own Guilty For everything I can’t control Disheartened 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 Unable To resist signing up for one more class Incapable Of holding yoga poses, so we fall on our ass Guilty Of laughing about our wobbly knees Disheartened some, 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! |
03/09/09 - We had our first meeting at Boone's Buffet and Grille.... looks like this will be our new meeting place, at
least for a little while until we can decide where else to meet, since Western Sizzlin has now closed it's doors... We
had a great meeting, and got to see Roy, who we all agree is looking very healthy and well since last we got to see
him!!! :) Thanks to all who came out for the meeting!!!
Update on our lady Jane: She's out of the hospital and doing much better, but still not out of the woods. She's
recouperating at home with family and friends and it's going to be at least another 4 or 5 weeks until they know how
things are looking... but she got the "fishes" card, and thought it was really sweet and it gave her a chuckle! :) She
sends her best to the group and her thanks!
Our next meeting will be at Boone's on Monday, April 13th. Hope to see you there!
least for a little while until we can decide where else to meet, since Western Sizzlin has now closed it's doors... We
had a great meeting, and got to see Roy, who we all agree is looking very healthy and well since last we got to see
him!!! :) Thanks to all who came out for the meeting!!!
Update on our lady Jane: She's out of the hospital and doing much better, but still not out of the woods. She's
recouperating at home with family and friends and it's going to be at least another 4 or 5 weeks until they know how
things are looking... but she got the "fishes" card, and thought it was really sweet and it gave her a chuckle! :) She
sends her best to the group and her thanks!
Our next meeting will be at Boone's on Monday, April 13th. Hope to see you there!
04/13/09 - We decided to try Ming's Buffet for our next meeting... still not too set/sold on Boone's... any other
suggestions for meeting places would be appreciated!
Update on Jane: She's doing much better, is home from the hospital, but still needing to take it very easy and hasn't
been able to attend meetings as of yet. But she sends her best... and so do we!!!!
suggestions for meeting places would be appreciated!
Update on Jane: She's doing much better, is home from the hospital, but still needing to take it very easy and hasn't
been able to attend meetings as of yet. But she sends her best... and so do we!!!!
5/11/09 - We have found our new permanent meeting place!!! :) MING'S BUFFET! Our meeting there in May
went great... the food was excellent, plenty to choose from, not just Chinese, American too, AND, the price was
right! The buffet with water to drink, $6.60 with tax! Don't think you can beat that with a stick!!! We were very
happy!
I brought a term to the meeting that I was interested to find out was not known to any of us ---- palliative care.
Palliative Care is the treatment of a patient to allieviate symptoms without curing the illness. Since this pretty
much defines MS, especially in the later stages of the disease, this was interesting information. If anyone is
interested in finding out more about palliative care, I have the link to the web site here, and will keep it in our
"helpful links" below for future reference.
This is the site with links for Palliative Care Resources, Quick Facts, a video, and a State-by-State Report Card
on palliative care facilities. When it's time for you to think about getting this kind of care, this could be a valuable
resource.
http://www.getpalliativecare.org/home/
So now that we've found our place to "play", we'll see you next month, Monday June 8th, 11AM at MING'S!
(Jane says hello, and plans to be there in June! ; )
went great... the food was excellent, plenty to choose from, not just Chinese, American too, AND, the price was
right! The buffet with water to drink, $6.60 with tax! Don't think you can beat that with a stick!!! We were very
happy!
I brought a term to the meeting that I was interested to find out was not known to any of us ---- palliative care.
Palliative Care is the treatment of a patient to allieviate symptoms without curing the illness. Since this pretty
much defines MS, especially in the later stages of the disease, this was interesting information. If anyone is
interested in finding out more about palliative care, I have the link to the web site here, and will keep it in our
"helpful links" below for future reference.
This is the site with links for Palliative Care Resources, Quick Facts, a video, and a State-by-State Report Card
on palliative care facilities. When it's time for you to think about getting this kind of care, this could be a valuable
resource.
http://www.getpalliativecare.org/home/
So now that we've found our place to "play", we'll see you next month, Monday June 8th, 11AM at MING'S!
(Jane says hello, and plans to be there in June! ; )
Care to help with a better quality of life
when pain and other symptoms are
hard to handle... Check out this site.
when pain and other symptoms are
hard to handle... Check out this site.
6/8/09 - We had a VERY good meeting, since we were able to welcome back our good friend Jane! :) And we
also got to see Gerald again... and we had some great conversation and commisserating! :)
We're hoping to see more of you come to the meetings, but we understand that it's summer -- vacations and all.
We just want you to know that we are here if you need us, or just want to come and laugh and have a good meal!
Next meeting is July 14th at MING's. See you there!
also got to see Gerald again... and we had some great conversation and commisserating! :)
We're hoping to see more of you come to the meetings, but we understand that it's summer -- vacations and all.
We just want you to know that we are here if you need us, or just want to come and laugh and have a good meal!
Next meeting is July 14th at MING's. See you there!
| To see minutes entries for previous years, click the ARCHIVE link here! |
9/14/09 - Ok - so - I suck at this minutes stuff!!! :) I see it's been awhile for updates here. But the last 2 meetings
were the same: Me and Jane. And July's meeting was GREAT, as we got to meet Ken & Vicki's mom!! :)
Jane and I have been holding down the fort in these last summer months -- but we're hoping to see you all back real
soon!! Come and join us for the newest bits of news from the Society and anywhere else I can find... and of course,
the good eats!! :)
Next meeting will be October 12th! See you then!!!
were the same: Me and Jane. And July's meeting was GREAT, as we got to meet Ken & Vicki's mom!! :)
Jane and I have been holding down the fort in these last summer months -- but we're hoping to see you all back real
soon!! Come and join us for the newest bits of news from the Society and anywhere else I can find... and of course,
the good eats!! :)
Next meeting will be October 12th! See you then!!!
10/12/09 - A great meeting in October! Ken & Vicki are back from their travels, and Jane and I made a foursome!
We discussed the newest headlines from the Society, and also reiterated the best things we can do to try to stay
healthy this flu season! Two words: Hand Sanitizer! I've been bringing give aways the last two meetings, and now
with H1N1, look forward to more Hand Sanitizer favors!!
Next meeting is Monday, November 9th. We hope to meet out newest members from Manchester, Angela Paras and
Stephen Ray! :) Come on out and join in the Fall fun! Thanks!
We discussed the newest headlines from the Society, and also reiterated the best things we can do to try to stay
healthy this flu season! Two words: Hand Sanitizer! I've been bringing give aways the last two meetings, and now
with H1N1, look forward to more Hand Sanitizer favors!!
Next meeting is Monday, November 9th. We hope to meet out newest members from Manchester, Angela Paras and
Stephen Ray! :) Come on out and join in the Fall fun! Thanks!
01/08/2010 --- Ok, Ok! I resolve to be better at this! :) Happy New Year everyone!!! Our November and December
meetings went very nicely, thank you very much. We are pleased as punch to welcome Stephen and Rose Ray to
our monthly "band of brothers" so to speak!
SORRY!!!! WE HAVE TO CANCEL THE JANUARY MEETING -- DUE TO SNOW & ICE IN MULBERRY.
Next meeting will be in February back at MING's in Tullahoma.
meetings went very nicely, thank you very much. We are pleased as punch to welcome Stephen and Rose Ray to
our monthly "band of brothers" so to speak!
SORRY!!!! WE HAVE TO CANCEL THE JANUARY MEETING -- DUE TO SNOW & ICE IN MULBERRY.
Next meeting will be in February back at MING's in Tullahoma.