Happy New Year Resolutions

It is time again to list wishes and make promises for a new beginning.

Wait. I've done this before. Sometimes I've had level of success, but sometimes failure rears its ugly head. How disappointing to review my list and find intentions that have been forgotten or gone astray. This is a productive exercise only if I actually make an honest effort at fulfilling each item on the list. I think I did pretty well in 2008 with the resolutions that I shared in last year's post. There has to be more though. Maybe I need a new way to make resolutions. I have to remember to allow my resolutions to be flexible so I am able to keep up with them.

(read more)

technorati tags: , laughter, positiveattitude, downthemspath, newyearsresolutions

Dangerous Disability Comedy

It's happening again. A character on a new TV show has a disability.

Megan Mullally -- you might remember her from Will and Grace -- has MS. Well, you know how MS is. It is so volatile, and therefore difficult to diagnose, so it is also easy to deny. According to Megan's character, she has something "akin to MS." She plays a hospital administrator who relies on crutches for mobility. It sounds as if we are being set up to see some outrageous humor including pratfalls -- just what disability awareness needs!

"Children's Hospital" was written by and stars Rob Corddry who was a writer with The Daily Show, so we know he can be outside the box. Corddry's character is a doctor in clown make-up who uses humor as the best medicine. If we use The Daily Show as an example, we can expect the show to be built around outrageous humor.

Humor with a character defined by mobility issues may result in comedy of questionable style. Perhaps they should precede each episode with a warning that reminds us the humor is in the situation rather than the disability. Otherwise, it is happening again where a disability has been put on view as a laughter trigger.

Maybe "Children's Hospital" rises above that bullying and will be presented in a respectable style. Megan's previous series handled another hot topic -- gay life -- and it was presented well. Oh, wouldn't that be nice? I look forward to it.

NOTE: I am adding this note to ensure I am clear. I haven't seen the program yet, but I plan to watch, and I hope it is good. I applaud the use of people with disabilities in programs.

We all need humor. If hot topics were off limits, then there would be no topics. The disability community needs to be included in funny shows as well as dramatic shows and commercials -- just like everyone else.

Megan has proven to be a favorite comedy actress. The tragedy would be if the show makes fun of the character because of the condition "akin to multiple sclerosis." However it is done, maybe it will instigate talk. There's nothing wrong with talk.

technorati tags: , downthemspath, meganmullally, robcorddry, disabilityhumor

VERMONT: Summer 2008

There Is Always Hope

At least Chelsea has hope.

Here is another condition that affects young people and has no cure. I never heard of Lafora before finding this link in a blog post written by a fellow MSer. Michael has written about New Year's Resolutions that could lead to new hope for us all.

Learn more about Lafora Disease, read Michael's resolutions, and think about some of your own.

technorati tags: , ladoradisease, newyearsresolutions, Vicki'sBlog, hope

Merry Christmas

For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.

technorati tags: christmasanimation, vicki'sblog

Merry Christmas, Happy Holidays and all that jazz!

"On Love" Excerpt from "Vampire Book 2; Carrie"

While Carrie was touring the Chateau Versailles with Tristan, Alucard lay in his coffin, safe from the morning light. He reflected back on last evening, the most magical night of his hundreds of years. The pleasure it gave him to see the Versailles Gardens through Carrie`s eyes.

At first, he was fascinated by his nervousness. This was something new to him. Would Carrie find him attractive? That would be too much to ask. She knew him only as vampire, a bloodthirsty heathen. What could she find in him that would not repulse her?

And yet, as he shared the Gardens with her, he found her animated, smiling! After he presented her with the Sun King`s guidebook, and she touched his arm, the ache within him blossomed into something else. Something he no longer had words to describe.

What is it that the poets are always reaching for? How do you describe this feeling? It is not want, nor need, though this is part of it. Nor is it lust, nor need of possession. It is something more!

Alucard pondered, what is it for me? It feels like an opening up, a need to give pleasure. The moment when Carrie touched his arm caused such bliss! To see her smile, and know I contributed to it. Perhaps the need to give pleasure is closest!

In the truest sense, he felt the need to please her, to make her happy. Only through her happiness could he feel fulfilled. Perhaps that is love.

V

The Meaning of Christmas

For centuries men have kept an appointment with Christmas.

Christmas means fellowship, feasting, giving and receiving,
a time of good cheer, home. ~ W.J. Ronald Tucker

Christmas is upon us, with all the Christian and secular traditions that mean something different to everyone. What does it mean and how is it different when a disability is involved?

To find out what Christmas means to different people, I posed two open questions on Yahoo! Answers tagged for the People With Disability Group. One question asked for a least favorite thing, and the other asked for a favorite thing about Christmas. The answers were generally things I expected but with a few exceptions.

(read more)

technorati tags: , downthemspath, positiveattitude, meaningofchristmas, christmasshopping, santa

Xmas Cactus

Blue Christmas

Probably the reason we all go so haywire at Christmas time
with the endless unrestrained and often silly buying of gifts
is that we don’t quite know how to put our love into words.
~ Harlan Miller

As Christmas nears, the Christian community prepares for the celebration of the birth of Christianity. In the United States, at least, a large part of Society recognizes Christmas as a time for holidays, for family closeness and the warmth of friendship. It is a time for presents, for embracing all of humanity through faith, hope, and charity. Isn't it wonderful?

Christmas should be the happiest time of the year. Just because it should be doesn't mean it is.

(read more)

technorati tags: (read, more), , downthemspath, disability, christmasdepression, ms, multiplesclerosus, msdepression, positiveattitude

Searching for a Cure

I was asked not long ago if I thought there would be an MS cure found in my lifetime. I said there were more MS researchers than ever before.

Nearly 100 young researchers sponsored by the National MS Society attended the NMSS 2008 national convention. Here is the story. There is always hope, especially when so many young minds are working on it.

technorati tags: , downthemspath, msresearch, ms, multiplesclerosis

Look at Me! Look at Me!

MerelyMe has started an ambitious project of interviewing MSers and posting the results on her site at her Health Central site. She publishes a new interview every couple of weeks, and this week she chose me -- take a look.

Be sure to read through The Multiple Sclerosis Tapestry which includes several interviews, each different, yet each the same. We feel a certain comaraderie and at the same time realize not only is each person unique, but each person's MS is unique in the grouping and manifestation of various symptoms. The other posts are varied and generally good reads, just like the blog where I first "met" her.

Belated birthday wishes

Now, look at me again -- Jennifer Thieme of Amigo Mobility International re-published an article I posted earlier in anticipation of the possibly hectic holiday season. Now that we are deep in the midst of those holidays, it might be a good time to re-visit this one and take time to relax.

Jennifer publishes Friendly Wheels, Amigo's e-newsletter that highlights Amigo owners of all types. It is often interesting and always fun. While you are there, look around the site. You might just see something you like. Okay. That's enough of me for now.

technorati tags: downthemspath, vicki, ms, multiplesclerosis, mainterviews, blogging, msblogs, scooters, amigo, amigomobility

MS is a Family Affair

I was lucky when I was diagnosed with MS. My boys were teenagers in high school, old enough to understand, and old enough to help with things. I met an MSer with very young children who was lucky enough to have family in town as well as a helping husband, but I still wondered how she did it.

When children or teenagers have a parent with MS or have MS themselves, they have the same questions as adults, and parents may not know how to answer. They often turn to the Internet for answers. Here is a young mother of two young children who was diagnosed ten years ago. She writes about Multiple Sclerosis -- Real life stories & Issues. It's worth a visit. Amanda is 26 and has 4 children! Her blog My Complications rants about daily life. She links to a Progressive MS bulletin board she helps manage on her sidebar along with a link to her recommendation of an online support group. And let’s not forget that men get MS, too. WhiteLightning is the blog of a young father, who writes in a fun story-telling style.My admiration goes out to you.

I regularly read Living Life as a Snowflake, a blog written by an MSer mom whose son compared MS with a snowflake: "...all different, no two are the same and...all special in (her) own way." What a lovely description. How lucky she is to have her son understand that well. She must have done a good job!

Raising children is not ever easy, but with a chronic disease it seems impossible. MS affects the MSer, but it doesn't stop there.

(read more)

technorati tags: , downthemspath, childrenandms, ms, multiplesclerosis, disability, msparenting, parenting,

RRMS Trial Studies Enrolling Now

Here is notice of MS trials. This is verbatim from Brenna's message:

New MS Clinical Trial Enrolling

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif^® Efficacy in Multiple Sclerosis (CARE­MS^SM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient's quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free 1-888-404–MS-CARE (United States only) or visit www.CARE-MS.com. There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to www.CARE-MS.com on your blog.

Vicki, thanks for your time and consideration. Please feel free to contact me at brenna.fitzgerald@fleishman.com if you have any questions or would like to discuss the studies.

Best regards,

Brenna Fitzgerald

brenna.fitzgerald@fleishman.com

Genzyme Corporation is the sponsor of these studies. Bayer Schering Pharma contributed to the funding of the studies.

Genzyme^® is a registered trademark of Genzyme Corporation. All rights reserved. CARE-MS^SM is a servicemark of Genzyme Corporation, Ó2008. Rebif^® is a registered trademark of EMD Serono, Inc.

technorati tags: rrms, trialenrollment

World AIDS Day

When America first became aware of AIDS in the 80s, it was scary for all.

Back in those days, most of my friends did not know anyone with the disease. Only people far away from our everyday lives had it and died from it, but then times changed. More and more people were dying under mysterious circumstances and amid rumors. The sexual revolution that released us from rigid moral restrictions was being trumped by fear of being exposed to the dreaded AIDS. Sex wasn't so easy any more.

AIDS, like every other chronic disease, touches the patients, their family, friends, and it doesn't ever let go.

(read more)

technorati tags: , worldaidsday, blogcatalog, nationalinstituteondrugabuse, hiv/aids, downthemspath,

Christmas Shopping Then and Now

There was a time, a lifetime ago, when I was ready for Christmas before Thanksgiving. As a single mother with two boys, I was always on the look-out for bargains. I bought things throughout the year, and my brother was overseas so I had to have packages wrapped and mailed long before Thanksgiving was even on the horizon.

When the Christmas season was in full swing and the malls were all decorated, I had already finished my Christmas shopping. I would visit the malls and they were so beautiful and now so memorable. I wasn't desperately searching for gifts so I wasn't rushed. I could appreciate the imaginations and budgets of the stores' talented decorators. Fairyland was all around. Carols were playing in the background, families were shopping, laughing, arguing, both kids and adults were making decisions, rushing from store to store. One mall's ice rink displayed skating talents and costumes and more laughter. I live in the Dallas area so I could enjoy Neiman Marcus at its best. Chrirtmas was in bloom. What a great way to share the feeling of Christmas.

(read more)

technorati tags: downthemspath, christmasshopping, holidaystress, blackfriday, cybermonday

Epstein-Barr -- Rumor or Fact?

We have heard for years that there may be a connection between Epstein-Barr (EBV) and MS.

Most of us, that is 90% of the general population, carry EBV-infected cells. Researchers from Australia's University of Queensland say MSers are less effective at fighting EBV. There is also a relationship between the strength of a person's immune system and the age MS develops.

Controlling EBV may result in fewer cases of MS. That sounds like promising news to me!

technorati tags: http://www.healthcentral.com/multiple-sclerosis/news-276230-98.html?ic=6080

My Tips for a Stress-Free Holiday

The Holiday Season is upon us, and with it comes stress. Here are my tips for happy holidays and high quality of life every other day, too:

• Start with a positive attitude
• I think a positive attitude is the best tool to enhance every day. Winston Churchill agreed: "Attitude is a little thing that makes a big difference." We all have control over our own attitude. We may as well take advantage of it by having a good one.
• Be grateful
• Sometimes it's difficult, but you may have to look in a different way or a different direction. Be grateful for friends and family, for opportunities that are yet to be and for memories or dreams.
• Practice Relaxation
• To start each day, add three deep breaths to your morning routine. Not quick gasps, but slow deep, full breaths.
• Practice Moderation
• Dinner, Gifts, Parties -- You know where you can cut back and where you cannot. Choose what you can do and want to do, and do it with gusto.
• Include yourself on the gift list
• This can cost much or little, or nothing at all. It can be time for yourself, a trinket that makes you smile, or that special something you always wanted. It can even be a massage that will help you relax during this stressful time.
• Smile and Enjoy the Spirit of the Season
• The spirit of the season is what you want it to be. Festive music, laughing children, joy to the world. Enjoy it.

Stress that comes with holidays is not healthy. It's often a trigger for chronic conditions to flare. I know it is for MS. I have been through this before. Apparently there are three main trigger points for holiday stress: Relationships, Finances and Physical Demands. The Mayo Clinic offers 12 tips for coping with the holiday stress. Mayo Clinic's tactical tips are good for these days, and they are good for the rest of the year, too.

(read more)

technorati tags: DowntheMSPath, disability, tips, qualityoflife, positiveattitude, joyoflife, holidays, holidayseason, stress, holidaystress,

Love & Despair

She lies amid the promises and pillows

on her side, fetally.

Nightdress riding her thigh and haunches,

exposing that which drove him to her.



The scent of her collides with shame

over his nature and acts.

Or was it a dream, her whispers of sad refusal.



He feels the cold leeching from her hips, shivers,

then joins her to him under covers, encircles her,

his fingers as a snake's tongue, searching, tasting,

the warmth of her breast a chimera.



He feels the cold impaling steel,

dips his fingers in the holy font,

and blesses himself in crimson.


V c2008

My Amigo

On November 12, 1968, Al Thieme opened Amigo Mobility and revolutionized the future of mobility forever. Now Amigo is international, offering mobility to the world with power operated vehicles (POV).

I bought my first Amigo in 2003, and it certainly opened my future, making life easier and less of a struggle. Suddenly I felt as if my independence had been granted again, and my future was once more full of possibilities. To know more about Amigo, sign up for Friendly Wheels, an e-newsletter that tells personal stories and updates on the product.

Thank you, Al.

technorati tags: , downthemspath, althieme, amigo, amigomobility, amigointernational, pov

LEFT BEHIND

The eve of death disturbs the phone
of sleeping son and love alone.
Hospice calls a moment past,
the agony unshared, yet to be devoured.

As a stumbling alerts us to the pain
that will inevitably come,
yet begs our balance and resolve,
a futile plea to immortality.

And later, after public utterance
and tearful countenance
do they smile at motes of dust
and bow to God’s reprieve?

V c2008

Honoring Veterans Today

Image via Wikipedia

Thank you for your service.

Veterans Day was established as Armistice Day to celebrate the end of World War I, the war to end all wars. Since 1954, we have observed it as a national holiday, Veterans Day, honoring the men and women willing to serve and defend America in the armed forces and dedicated to the cause of world peace. Veterans Day has come to represent those who did not come home. Now it is more.

(read more)

technorati tags: downthemwpath, disability, veteransday, ms, grjenkin,

Technology for Disability -- Something for Everyone

The test pilot crashed, but he survived, barely. The colonel was a former astronaut, a national hero, and the accident promised to leave him severely disabled. However, it was the mid-seventies and science was advanced enough to not only save his life but to use electronic or mechanical parts that would do more than make him feel "good as new." It would actually give him extraordinary strength, almost like super-powers. The only problem was the surgery to save this hero would cost $6M.

The story of Steve Austin, The Six Million Dollar Man was a fictional whisper hinting that science had the secrets that could correct even the most severe injuries. What was not fictional was the high cost. Has science taken steps to fulfill that fantastic promise?

(read more)

technorati tags: downthemspath, steveaustin, communication, scientificadvances, disability, assistivedevices

Caring and Compassion

If you want others to be happy, practice compassion.
If you want to be happy, practice compassion. ~ Dalai Lama (1935 - present)

Often a person becomes a caregiver by circumstance, when a baby is born with a disability, a parent develops Alzheimer's, an adult child comes home from war or a fully-able person develops a disabling condition. "More than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year, and 44% of them are men."* Being thrown into this unfamiliar activity of caring for a family member, whether it be full- or part-time, brings up a multitude of questions and feelings.

What needs to be done, and how should it be done? There are classes and tip lists available. The person you are suddenly caring for is still your baby, your parent, child or loved one who needs help with mobility, dementia, errands or meals. "The value of the services family caregivers provide for 'free' is estimated to be $257 billion a year. That is twice as much as is actually spent on home care and nursing home services."* The National Family Care Association has an even higher estimate. Wow.

(read more)

technorati tags: DowntheMSPath, caregiver, disability, health, caretaker, care, caring, tips, disabled, wheelchair, respect, agingpopulation, compassion, carer

Humor and Disability

Humor is a serious thing. I like to think of it as one of our greatest earliest natural resources, which must be preserved at all cost.

James Thurber, American writer (1894-1961)

Is there anything funny about disability? Not the disability itself and not necessarily the disabled person, but the situations we find ourselves in are often funny, and everybody often laughs at the same things.

Let's look at the wheelchair careening down a slope. Funny or frightening? What if it's a car, kids in a wagon, someone skiing or even someone rolling in a tire. This gag is a staple used over and over in movies and sitcoms. A Psychology Today article, What's Your Humor Style, mentions that the ancient Greeks thought humor was aggressive, and this particular gag certainly seems to be so. The article tells us this is only one type of humor.

(read more)

technorati tags: , DowntheMSPath, disability, health, wheeler, wheelchair, humor, disabledhumor, laughter, positiveattitude, helpless

A Few More Words from A to Z

A couple of weeks ago, I posted a Disability Alphabet. I had made a goal of emphasizing only positive words, and I went through the letters, coming up with words that came to my mind. When completed, I then asked: “In a word, what does disability mean to you?”

There were some comments, some with submitted words, and some words plucked from your prose. I knew I missed some!

Tim's Disaboom Weekly newsletter started me off with one of my favorite tools -- a quote. Anyone who reads my blogs knows I frequently use quotes. So many people have said so many things better than I could ever say them. Tim's offering was “Words are the voice of the heart.” Confucius put it so nicely.

Now let's look at some additional word suggestions received from others --

(read more)

technorati tags: DowntheMSPath, disability, health, ms, humor, ada, positiveattitude, joyoflife

Good Intentions and Worst Words

Language is a hot button in the disability community. We have words that can be used among ourselves, but we prefer able-bodied people (ABs) to omit them from their vocabulary. Terms like "crip" and "gimp" and other pet names are bandied about, but we find them especially derogatory if someone outside our group dares to speak their names.

In fact, most people are squeamish about certain words, but there are no definitive guidelines for determining when it is okay and when not to use such language. Often words used in complete innocence are offensive. Do we need a glossary of unacceptable terms? I think the guideline should be to be respectful when talking and not too sensitive when listening.

Ouch! is an online UK magazine about disability sponsored by the BBC. If you are unfamiliar with it, take a look. Ouch! has been exploring language used in reference to disability. In 2003, they assembled a list of the top ten offensive words and asked their readers to vote which were perceived as most offensive. Ouch! revisited that exercise and published the results in August. Responders were asked to voluntarily identify themselves as disabled or not.

Here is a data visualization in Swivel.com of the results:

2053 votes cast: 73.9% non-disabled 18.3% disabled 7.6% "rather not say"
Click here to see relative values by percentage.

(read more)

technorati tags: DowntheMSath, disability, wheelchair, terminology, language, respect, innocence, censorship, communication, positiveattitude, attitude, wordpower, languageofdisability, offensivewords, wordchoice

Survey Request

Kathryn M. Martin, Public Affairs/Patient Advocacy Manager at MediciGlobal, sent a message and asked that I put this in my blog:

"We're doing some research to understand the journey people might take from their first symptom(s) of MS, to the time they visit a doctor, and eventually if/when they begin treatment options. If you have about 5 minutes to spare, we would really appreciate it if you could take this survey to tell us about your journey. It's anonymous so no identifying information will be collected."

I took the survey. The questions were simple, anonymous as promised, and took only a few minutes as promised. If you would like to participate, click here.

technorati tags: mediciglobal, msresearch, downthemspath, mssurvey

Share Your Art and Writing

Are you an artist with work to share? Here are two venues:

The MS Foundation is a service based non-profit organization the helps MSers especially focusing on improving quality of life. The website has developed a new forum, "Voices," designed for authors, poets, writers and photographers to share their work.

Tonight I read a short story, a poem, and saw pictures of a koala, lorikeets, baby platypuses, and a baby possum with burned "hands." Cute, cute, cute.

Anyone touched by MS can offer work, MSers, friends and family. Check topics in "To Our Visitors" the read "Forum Rules" to get started.

The second venue is Kaleidoscope Magazine that explores "the Experience of Disability through Literature and the Fine Arts." They publish fiction, non-fiction, book reviews, and visual arts of all kinds.

See publishing and payment information, or subscribe to the twice-a-year magazine.

Enjoy!

technorati tags: art, photography, writing, magazine, msartists, downthemspath

Disability from A to Z

I decided to make a Disability Alphabet, and I made a goal of emphasizing only positive words. I was inspired by Missy's ABC's of Caring Game, where she started a challenge asking readers to submit a word about care giving for each letter. My disability alphabet took me through a kaleidoscope of words. Here are my words. Suggestions?

Attitude
"The only disability in life is a bad attitude." ~ Scott Hamilton

The letter A could stand for so many things that are important to the person with a disability. However, I chose Attitude. A positive attitude allows each of us to accept ourselves and enhances each day. Besides, we can control our attitude and keep it positive.

Other good words: Acceptance, Accessibility, Accomplishment, Action, Answers and Assurance

(read more)

technorati tags: downthemspath, positiveattitude, disability,

Driving To Independence

Independence is happiness. ~ Susan B. Anthony

I worked most of my adult life to become independent. It has always been important for me to take care of myself. My parents taught me well. Then MS joined me on my Life Journey and put a chink in my armor. Life changed and so did my independence. I was going to need help.

Now, I know everyone needs help at one time or another, and not everyone is able to ask for it. Some people have difficulty even accepting help that is offered, let alone asking for it.

I remember when I got my drivers' license at 14, thanks to Louisiana. It didn't occur to me at the time, but that was my first step toward independence. I no longer had to rely on my parents or school buses or friends to go anywhere. In fact, I became the friend who could transport others.

(read more)

technorati tags: driving, independence, downthemspath, positiveattitude

Dancing Wheelers

Dancing was once a favorite pastime of mine, but I had to give it up when my balance left me. My scooter ensures my only dancing is with my arms and shoulders. However, some people just won't quit.

I wrote an earlier post about bunnymay wand her story about a woman dancing from a chair. She was not actually a wheeler, but she learned while actually living in a wheelchair in Mexico for weeks before the performance. She danced solo on stage.

Here is another one - Deaf Mom wrote about a wheeler who performed ballroom dancing with an upright partner. She has the video and it is certainly worth the visit. Thank you bunnymay and Deaf Mom for these stories that tell us not to give up dancing.

technorati tags: wheelchairdancing, downthemspath

A Memory from the Past

When I was a child, I saw a young girl in a wheelchair being pushed by a woman I assumed to be her mother. We shared a smile as we passed. I was just a little girl myself, and I related to the girl in the chair because we were about the same age.

An adult nearby -- not someone I knew -- said: "Isn't that a shame? She is so pretty."

(read more)

technorati tags: downthemspath, wheeler, wheelchair, positiveattitude

Wheeling Through Time

We were watching a DVD of the old TV series Connections the other night. Connections was a documentary series in which James Burke made connections from an early discovery through civilizations and time until it shows up as a magnificent part of modern civilization. It is almost a version of "Six Degrees of Kevin Bacon." As I was watching, I wondered when and where did the wheelchair begin?

I knew a little, but I also knew there had to be more. The earliest reference I found was a wheeled bed in Greece in 530 B.C. I cannot imagine that was very mobile or convenient, especially for visiting friends or shopping. Just five years later, the Chinese put wheels on chairs. The Chinese honor their elders and they appear to honor disability as well, because by the third century they had a "rolling apparatus for the infirmed."* The earliest image of a wheelchair was found incised in stone on a Chinese sarcophagus, but the histories that I found did not credit the Chinese with inventing the wheelchair.

(read more)

technorati tags: DowntheMSPath, disability, disaboom, wheeler, wheelchair, wheelchair, history,

Fetishism and Addiction

All fetishes and addictions are life-limiting attempts to fulfill personal strivings for creative heroism in service to the denial of death anxiety.
V T Deabler, 2008.

Finding Joy in a Pain-filled Life

"But pain…seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?" ~ Lois McMaster Bujold, Barrayar, 1991

I always had a very low threshold of pain. Since my MS diagnosis, I am learning, much to my surprise, that I can live with pain and still find joy in life. I am learning to coexist with the scary pain monster.

One day last year, I was happily going through my morning routine, washing my face and brushing my teeth with an electric toothbrush. Suddenly I had a blinding pain. It felt as if I was being electrocuted. There were shocks of lightening bolts jumping through my mouth. I dropped the toothbrush and after what seemed like an eternity, the pain resided. I was shaken, I had trouble understanding and tears were streaming down my face. I did not know what to do next.

(read more)

technorati tags: DownthMSPath, disability, ms, , positiveattitude, mssymptoms, joyoflife, pain, pain, management, facepain, trigeminalneuralgia

Is the Bone Broken?

Apparently it's not always easy to know if a bone is actually broken. Some are more obvious than others.

In April 2006 I was transferring into the car when I heard a loud POP and my leg hurt really bad. It hurt again each time I moved it. My doctor sent me for an X-ray and MRI. I thought the X-ray would have been enough and the MRI was overkill.

The nurse told me everything was fine and I should go home, so I did. I was home less than half an hour when she called and said I had to go back. There was a fracture after all.

I always thought that was strange. Then I found an article on WebMD that says it may not be so strange after all. Sometimes an X-ray does not even show a fracture. Other tests such as an MRI or CT scan. I know the MRI simplified diagnosing MS and injured athletes often have MRIs, so I should not be surprised. The role of the MRI in diagnosing and identifying problems is expanding.

I was lucky they kept looking at my results after I left. Otherwise I would not have known my leg was actually broken and not merely bruised.

technorati tags: MRI, bonefracture, downthemspath

Sharing the Caring

We don't understand each other. There are so many things caregivers don't really understand about the very people they are caring for. To be fair, the cared for do not understand many things about their carers either.

When I used a manual wheelchair my mother would push me out of the way, facing toward the wall. I talked to an actor who played a woman in a wheelchair. She told me people on the set often placed her facing the wall, too. What was intended to be helpful was actually seen as thoughtless. Why would we want to sit facing the wall? It felt as if we were just being put aside. Even the actor who was fully capable of walking was pushed aside because she was in a chair.

(Read More)

technorati tags: DowntheMSPath, caregiver, disability, disaboom, caretaker, upright, respect, perception, independence, attitude,

MS and Vision

If you have MS, the chances are that you experience some type of vision problem, too. Well, tonight there is a webcast that might answer some questions, or at least shed some light on some vision difficulties.

Healthtalk is sponsoring a webcast called Symptoms of MS: Recognizing and Treating Optic Neuritis tonight at 8:30 EDT. Experts will share how to identify optic neuritis and how to treat it. Sign up now. or go directly to the webcast.

technorati tags: ms, multipltesclerosis, msvision, opticalneuritis, downthemspath