After the Multiple Sclerosis Diagnosis, Things You Can Do and Should Know

Take a deep breath.

The majority of people diagnosed with MS will live a long life and never need a wheel chair.

You have a disease that has warped ahead in the last 20 years to a place where there are many avenues you can take to manage it. It will be managed; you CAN do it.

Every week, new research is leading us closer to answers about MS.

You are not alone. There are support groups and many blogs written by people with MS. Join the community!

Time is on your side. MS will not kill you. "Death by Ms" is rare and if you are that bad off, then you are not reading this. (If you don't believe me, ask your doctor.)

Keeping your body in good shape is essential to living well with MS. Exercise, eat healthy, rest, follow your passion.

Don't make hasty decisions, especially when you are having a relapse. Most MS starts as relapsing/remitting, "This too shall pass."

Talk with your friends and family. They will want to help you.

Educate yourself about MS! With the Internet you have a WORLD of information, use these tools and sharpen your emotional tools.

DON'T quit your job until you have tried everything to keep it, the Americans with Disabilities Act (ADA) mandates that an employer give you reasonable accommodations. Sometimes the simplest of changes can mean being able to keep your job.

Form a good relationship with your primary care doctor. MS will NOT be responsible for every physical problem you have.

Breathe. Focus on the good things in life and go after them now. Surround yourself with things that make you happy. Help others whenever you can. Give. The return is always great.

Your new adventure awaits you! Embrace MS, it is a part of you now. There is always a chance a cure is in your future!

Start a diary, let your feelings out. It is okay to cry, to be afraid, but don't let MS define you and don't let fear be the boss of you.

Hey! Think about staring your own MS blog. It is easy to do. We will warmly welcome you!

Leaking the Truth, I CAN Handle It

Latest leaks about our governments "secret" (really? seriously? a little less arrogance, please---like the world sees the USA as a goody-two-shoes, never call anyone a jerk behind their back, no plots, no torturing captees (?),yeah, like that every happened.) doings have gotten everyone up in arms. Our politicians want to sue a few people. Uh-huh, doesn't look good, our true self isn't pretty, but we will forget THAT and focus on the truth being exposed. Seriously?

Let me go out on a limb: GROW UP AMERICA! Stop lying to your people. Why have you kept these secrets? So that when other countries accuse you or act the same way, YOU can point a finger and tell the American PEOPLE---LOOK AT HOW THEY ACT!

Oh, play up the "this harms our people!" Seriously? How many of OUR PEOPLE have these secret actions already harmed? Other countries accuse us, know what they have seen and heard, then they act accordingly, all while WE deny deny deny.

How insulting to the American people! You keep secrets from us as if we were children, "for your own good..." NO! It was for YOUR own good. YOU had hate for other countries leaders; YOU lied and cheated, not us. We are no better than they are. Swallow that pill--if you dare.

I read all the reports about the leaks and the backlash and I wonder why I bother voting. Who can I TRUST anymore? And for every secret that slips out there are 100 that remain unknown. A US History text book from the 1800s, is more fiction than fact. LIES LIES LIES
Next WikiLeakia will say there is no SANTA!

Top Five Simple Actions You Can Do For Your MS

1.) Eat healthy

2.) Exercise any part of your body that you can

3.) Reach out to people, family, friends, strangers

4.) Discover YOU. What makes you laugh? What are your fears? What is fun?

5.) Laugh, educate your fears into remission, have fun!

Guns as Toys

Another blog asked, "What was your favorite toy, when you were a child?"
NRA aside, I answered, "Rifle!" Then I found this photo in my box of memories---I can still feel it in my hands. That is a blue vinyl (or as the poor call it: leather) jacket and a blue felt cowboy hat. I loved that hat too. It folded so great!

Next to me on floor is my Great Dane, Butch, and my sick son, Billy. I was protecting them from the bad guys. (In pink hats?) Billy was sick a lot, never knew why. I shot deer and buffalo, made stew for the boy, but he missed his mama so. Pert near killed him the day she died. Did my best with the boy, but he never was the same. Just look at him.

Do YOU recall a favorite toy?

Zesto Man from Mars and NASCAR in 1963

Here is Aunt Violet looking out the window for customers at a Zesto she staffed on weekends for a summer or two. I must have been 6 or so, she about 56. She had another job in retail, but she was always up to try new things. Her niece had bought the place and needed extra help. If only she had had more money, she would have been quite the entrepreneur!

The Zesto was off a highway and I liked to tag along, helping and getting free ice cream cones! Her partner in all crimes, Ivah, thought Aunt Vi was crazy to take this on, but as usual she joined her anyway. Once Aunt Vi SWORE that "Martians" were stopping by. Of course she was handily laughed at, but they laughed when she said we would land on the moon too, so...

I was anxious to get a peek at this alien and by golly, one night she shouts, "Here it comes!"
Ok, Aunt Vi, to quote you, "If you say so." Looked like a man on a motorcycle, wearing a helmet that covered his face. I'll agree that looked weird in 1963, but it closely resembled what NASCAR drivers wear now. You could barely see any eyes and he did have a strange voice...

Aunt Vi, always an adventure wherever she went.

CCSVI Is it the silver bullet for MS that so many hope for?

http://www.wheelchairkamikaze.com/2010/11/ccsvi-some-words-of-caution.html#comments

Here a some thoughts from a man who has gone through CCSVI.
It sure felt good to read from a blogger considered an "expert" on MS, that CCSVI is to be considered with eyes wide open and caution. (Since my post that described it as another MS decision I must make, jumping toward many unknowns just as I did when choosing Copaxone.)

Lady Gaga Live on Thanksgiving Blog

Lady Gaga in concert live in Tacoma, Washington. What, you may ask, does this have to do with Thanksgiving? Represent!

Oh, please, I have sooo many things to be thankful for. Every day I am thankful for so much. How can I pick one, two, or a million? My entire life I have had people around me who loved me, inspired me, taught me, heard me, cared about me. It makes me feel I do not do enough with my life, "To those whom much is given..." So every day I try to give back.

As lonely as I have felt sometimes, I have really always been around many people. Perhaps that is why I feel such a need to write about them and how they molded my life's path.

Blogging is great fun, but soon I will leave. There are books to be written, books to be READ! Starting 2011 I must rebalance my time. But, not today. Today I will join my neighbors, my new extended family of friends in a feast. Somehow I will accept the American desire for this holiday--one which history shows was the beginning of the end for many native Americans. Time off from work, time with family, prayers and thanks, football and food, all the trappings to start the real explosion of American consumerism and gluttony--Christmas.

Oh well, such is life in the USA. I was always most thankful for 4 days off work, IN A ROW!!

Must learn more about copyrighting and trade marks. The business part of writing is so tedious.

Multiple Sclerosis Will Not De-Feet Me

Lately, I was feeling bummed about my walking goal (dream? attempt? quest?), there was a development that I didn't share with anyone---neither of my feet were responding anymore. No ability to shuffle or move EITHER of them. Very discouraging, after TWO years of inability to move ahead. I finally confessed to my partner on Saturday. She gave me encouraging words and together we talked about the progress I HAD made.

For about 6 months before my explosion/4 days in ICU in 2008, my ability to stand and walk for the daily trip across the room had ended, slowly, worse each day.

Then I got sick, from what we will never know exactly, but I certainly have MY idea, anyway it was a whirlwind move to assisted living as my partner and I spiraled downward, unable to help each other as we always had over 30 years.

Our arrival at the assisted living community was swift and a cascade of horrible physical events came down on my partner within months of life in our new surroundings. We hit rock bottom in our life together, so far. My point is that we both have been crawling slowly back up for years now.

I was always the healthy one. She was always unwell. (I NEVER saw the MS or Cancer coming!) My role of "needy" is not a comfortable fit. But, you play the hand you're dealt.

When I started my "Walking with MS Diary" for this blog, I didn't realise how far I had sunk. Maybe I did, but chose to see things differently. As time passed and my blog readers anxiously awaited good news, there was not much exciting to tell you. All my ideas were failing miserably and it was a constant, "back to the drawing board," all of which I hope to detail in a book one day.

(That is a nice thing about being a writer, even bad events are good grist for a story!)

One thing became glaringly clear: I could not bear my own weight! Who knew? When did it happen?! AArrgh So, I focused on that. I worked up to a minute...one day. But it wasn't progressing, it was regressing. Advice Alert: When one part bums you out, move on to something you can have success with. So I really focused on getting my arms in shape. Lots of progress there. From NO weights to 1lb then 5, now 10. I have known the fun of watching results of shaping your body with weights, and it still makes me feel strong.

Next the mini-exercise bike--I couldn't use it for years, started a bit at my new home, and as of the last month I can do it using only my hips! (without having my arms push my legs) So exciting!

A few weeks ago I began standing with my walker (unused in a closet for years), building up slowly from a few seconds to a minute to--TA DA TWO MINUTES last week!

This morning (this actually happened on Sunday--I was SOO excited I cried/had to write it down right away, but already had the Ked's post and Uncle Arthur ready), after being so down yesterday, I was able to take TWO steps, unaided, with my walker! My caregiver was as ecstatic as I was. "Tomorrow you will do more!" she said. The photo doesn't do her smiling face justice, it is so dark at 6:30am now. Yes, I am sky high! I know that maybe tomorrow I will not take a step. I know there is still much work to be done. But I also know I am on the right track and all the doctors who couldn't put me together again (say that to the Humpty Dumpty rhyme rhythm) just didn't know or care enough. Dumb and Dumber.

And I hope you know that I will NEVER give up; and neither should YOU. Don't let anyone label you. Make a plan. If one thing doesn't work, then try another. Try a thousand! DON'T GIVE UP ON YOU.

SNOW IN SEATTLE Temp. in Teens

I took the top 2 photos at about 8AM, the last 2 about 3PM, and it is still snowing at 10PM. Icy streets, freezing temps. in teens, brrrr! Seattle will come to a halt. Isn't snow a wonderful thing?

Sneaking in Army at Age 15

Uncle Arthur, Army man, all grown up at age 15. He lied about his age to get in and serve. What a baby face. What drives the male of our species to want to engage with guns in wars? So many seem willing and wanting...

Red Ball Keds, Can They Really Stop on a Dime?

While some adults found me quite intelligent for my age, there was also a whole lot of stupid in me. (still is) (both I HOPE) TV was new when I was a kid. I don't remember many ads, but I remember the one for Red Ball Keds, "Stop on a Dime." I had to have a pair. I HAD to!

So, mother obliged and I couldn't wait to put them on. I ran my finger tips over the little red ball imprinted on the heel. Then, I placed a dime at the end of the driveway to aunt Vi's garage.

Would they work? Could I really "stop on a dime" after running full speed. (How full would that be for a four-year old?) I took my position, aimed, excitement dripping down my body, OFF!
I ran like the wind and then STOP! I looked down and to my amazement they had stopped right on the dime! "MOM!"

Looking at their website, the "Red Ball Jets" are no longer made, but Keds still are and a little girl's pair is $40. I KNOW my mom didn't pay the 1962 equivalent of $40 for those shoes. Unless Aunt Vi bought them in 1960, I would say that shoes TODAY are horribly over-priced for kids.

1949 Buick

Georgia Mountain Man http://georgiamountainsandbeyond.blogspot.com/, boy, you're good. Spot on. The sound of the heavy, solid doors closing---don't make 'em like that anymore.

Guess the Car. Chicago Cowboy in Fort Wayne

This is my Uncle Arthur, Aunt Violet's big brother. He lived in big city Chicago and his visits were always big deals. Once he paid cash for a new Cadillac, giving the small city-Fort Wayne car salesman quite a thrill. I loved to watch him work his money magic.

He always paid for meals out. He always dressed snazzy. He lied about his age to fight the Nazi troops when he was 15, and was a "self-made man," starting his own wood-working business, followed by purchasing properties in Chicago. His tough guy exterior held him up for comparisons to Spencer Tracy and eventually he found his own tough lady, Katherine Hepburn in a smart and classy Sadie. Sadie and Art, till death did they part. A fun-loving pair, I loved being around them.

And they loved kids. In photo he is playing with my brother. His sense of humor was notorious.

Can you guess what make and year that new car of his was?

New Disease Epidemic: Hypoadvertisilliac

Yesterday I had lunch with a few neighbors from my retirement community. We began discussing MS, Huntington's, Cancer, and other maladies. One conclusion we all agreed on, from ages 50s-80s, was that all the magazine and TV ads for drugs are making us sick.

While doctors and researchers are quick to point out the power of the placebo effect, they are silent on the effect all these "informational" ads about drugs have on us.

Vitamin D levels? It seems most people are not reaching "optimum levels," but go to 4 different doctors and you will get 4 different reasons why that fact does or does not matter. "We think..." "It may be..." "Some studies have shown..." My favorite is, "It is possible that..."

Anything is possible and when it comes to upsetting us about our health, anything goes. You read about the symptoms of a disease and my oh my, YOU have had that too! It has been long known that medical students can become afflicted with: hypochondriasis.

Yessiree, after hearing about a disease so much, after talking and listening about the symptoms so much, the students start to believe they have the disease. I have a new word: Hypoadvertisilliac.

And if you don't have what you thought you might, I'm betting a doctor can find SOMETHING not 100% normal. There's a pill for that.

Where is the study on how an avalanche of illness advertisements and awareness campaigns effects a person's sense of well-being? Can you think yourself ill? If you focus all your fears on one point in your body...who knows what the brain is capable of? Ask anyone who meditates if that is not making them feel better.

Is it any wonder doctors are so busy now? Or that our health care gets more and more costly? We have so many prescriptions that we end up flushing the expired ones down into our sewer system and into our neighbor's tap water.

Whatever you do, DON'T read the "side effects," those might possibly be in some cases, deadly.
And afterall, isn't what we all want is to live to be 110? Do you? Visit a nursing home and get back to me on that.

Love, Ponies, Seagulls, and a Velveteen Rabbit

There was another side to the external beauty of the horse estate I mention in the post below. Above is a photo of a small barn (more like a big shed) that one of the horse caretakers made into her own personal barn for her pony, Poco.

She was poor and dressed the part. (That's me with her pony in pic) Her hair was long and blonde; her eyes were crooked. The others on the grand estate spoke of her as if she was not right mentally. All I know is that she always had a smile on her face.

As I became friends with her, she told me her story. Her father was an abuser, probably hit her on the head one too many times. She ran away and lived on her own from a young age. Traveling around the states, working shoveling horse poo and cleaning barns, she had no home, family, or money. She had attempted suicide many times, once driving a sharp, silver, letter-opener into her hand--right in front of her uncaring father, on his desk. But even that did not get her the attention she craved: LOVE.

Her pony was her only friend. I wanted to be her friend. I wanted to give her love.

One day she gave me a book called, The Velveteen Rabbit. Its pages were worn and she told me she had read it many times. She didn't own much, but this book was hers. I was honored. Then she smiled as she told me a very sad thing.

The estate owners found out about her hidden pony and she had to go. She smiled as she spoke, but her eyes filled with tears that never fell. I asked where she would go. She didn't know, yet she seemed confidant she would be alright. "You were nice to me," she said. I held the book tightly between my hands.

Around my neck was a silver plated seagull that my mother had given me for my birthday, because I loved seagulls and the book, Jonathan Livingston Seagull, " Jonathan Seagull discovered that boredom and fear and anger are the reasons that a gull’s life is so short, and with these gone from his thoughts, he lived a long fine life indeed." I took it off and gave it to her. She immediately put it on, saying, "I'll always wear it."

That was the last of saw of her and I often wonder what became of her. I did not read the book she gave me for many months, it looked like a book from her childhood. When I finally read it, I was touched beyond words. (Most of you probably know the story of the Velveteen Rabbit, a toy that comes to life.)

" The Skin Horse had lived longer in the nursery than any of the others. He was so old that his brown coat was bald in patches and showed the seams underneath, and most of the hairs in his tail had been pulled out to string bead necklaces. He was wise, for he had seen a long succession of mechanical toys arrive to boast and swagger, and by-and-by break their mainsprings and pass away, and he knew that they were only toys, and would never turn into anything else. For nursery magic is very strange and wonderful, and only those playthings that are old and wise and experienced like the Skin Horse understand all about it.
"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real." "...once you are Real you can't be ugly, except to people who don't understand."

When you love someone, you give them life. I hope my friend found love wherever she went. She was one of the most beautiful people I've ever known.

Indiana Horse Show Memories and Bob Hope

During the mid 1970's I traveled on the Indiana Horse Show circuit. Waking at 4AM, driving my car or joining a caravan of sorts, a show awaited. Some were at beautifully manicured lawns of expensive private estates, some were in muddy fields at night under spot lights.

The sounds and smells of a horse show--nothing else like it. Prim and proper English saddle or Cowboy hat Western, all the horses and riders are at their prime and eager to show off.

At one jumping show, there was THE horse to beat. What a horse! Every time he jumped, always a perfect jump, he kicked up his heels. So cute.

I never had the guts to ride the big horses, but I did take a stab at the ponies. The large estate I hung out at with my horse-loving lover, was so dreamy. In evaluating my broken heart when I was dumped, I came to realize that much of what I missed was the surroundings of our time together. That magical estate, with rolling hills of green, the early morning mist rising from the dew from the acres of grass, the scent of straw, the soft sound of birds--I didn't know it was a once-in-a-lifetime experience.

The estate was so big, the owner so wealthy, that Bob Hope once flew in for a visit, a birthday party, I think. In the middle of Indiana nowhere. All hush-hush. One old lady down the dirt road had a MJ Neverland type "yard" with lions, giraffes, and miniature horses in her mansion. One could drive past this estates and never have a clue what laid ahead, through all the trees.

Once I drove down the long road to the estate home and my love was hanging from a tree top with white flowers in her hair, "babysitting" the owner's children, much like the scene from The Sound of Music. Can you blame me for not wanting to lose all of that?

It still amazes me--how such magical places are hidden next to the cornfields of Indiana.

I would never go to a horse show again. Too many memories I chose to forget.

She called me, my young lover, in the middle of the night, to drive her to the stall where a horse was giving birth. I was at her beck and call, so I drove with urgency, speeding down winding, dark country roads, and we arrived just in time to see a baby horse being born.

So many memories.

Confederate Belt Buckle in School Causes Problem

The public responds at Howell school board meeting regarding disciplinary action against HHS teacher Jay McDowellhttp://link.brightcove.com/services/player/bcpid52247569001?bclid=0&bctid=665136199001

"Gay 14-year-old Michigan student has stood up for a teacher during a board meeting, after the teacher threw two students out of class on a day against anti-gay bullying.
Howell High School economics teacher Jay McDowell wore purple on October 20, a day to commemorate gay teenagers who had killed themselves after being subjected to anti-gay bullying. McDowell asked a student to remove a Confederate flag belt buckle and the student complied without protest. Another student, 16-year-old Daniel Glowacki, piped up and asked why the student with the belt buckle should be required to take off the Confederate flag buckle when other students were allowed to wear purple shirts.
A heated exchange reportedly followed, with Glowacki stating that he was a Christian and did not support the gay "lifestyle," and McDowell eventually asked him and another student to leave the classroom.
The teacher was suspended for a day without pay, sparking debate over whether he followed school policy or whether he breached Glowacki's First Amendment rights.
The school superintendent has told MSNBC it was a "teachable moment" and an opportunity for dialogue, saying the student voiced his objection respectfully.
People from across the state attended the board meeting in support of McDowell. Many addressed the board, including 14-year-old student Graham Taylor, who said "I myself am gay, and I am a young person. This teacher, whom I fully support, finally stood up and said something," he said." FROM GayNZ.com

GOOD START TO EACH DAY WITH MS

Regulation, Instigation,of Constipation in My MS

Constipation affects many people with multiple sclerosis. I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.

All my life I had been very regular. Up in the morning, deposit in the loo, off for a run, home for my day to begin. Even as a child, up in the morning, loo, on with day. I took it for granted. Never imagined anyone else had a problem. Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker." My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.

Then I read "the word" in an MS pamphlet. Next I read how to avoid this problem, just in case it struck me. I could understand how easily it might happen, since our ability to move becomes compromised. When I needed my first scooter, I experienced the big C. (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.

WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny." Imagine my shock and embarrassment. I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom. (I kept asking friends, "Are they SICK?" But, learned it was expected during most deposits. SHOCK) So, then I had to take action.

First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark. Dark and hard as a rock. I then examined my diet. Yes, eating enough fruits, vegetables, whole grains...so I increased them all. No change. I swore Mr. Hankey was hard as iron. LIGHT BULB MOMENT! My multi-vitamin was IRON PLUS! I thought that would be good for my MS. Switched to non-iron. Started reading labels of all the cereals and food I ate "iron-enriched" UGH! I would probably explode in my next MRI!!

After a month of no extra iron, my stools returned to normal! But, moving the bowels was still not quite right. I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake. I told this to my partner, who laughed and explained that was what Metamucil was.

AH! I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate. I began. Not much happened. I called my doctor, "Could I take a higher dose?" He agreed that might do the trick.

While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily. Too easily. It would come too fast and without warning. What a messy situation for someone using a walker and unable to run to the loo. I was starting to get discouraged. Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium? My fiber intake had been enough for many years...

It worked. My bowels now move daily and are of perfect color and consistency. I can even control what days I might want to hold off (like for doctor appts.) and up the next days water. Such a simple fix. I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.

Yes, I discussed this with my doctors. The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow! Who knew? She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting." He is still learning. AND he is open to anything. He KNOWS he is not God. He also knows ME and how I experiment on myself. My current neuro just brushed me off as usual. She doesn't even see me anymore--has shoved me onto her rehab doc. (I refused to be scared by her dire predictions for me and refused her drugs of choice. She hates the sight of me.)

So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all. As a child I rarely drank and got my water from food, hense, I was over-weight. When I got a handle on my weight, I began drinking water whenever I felt hungry. I was not hungry, I was thirsty. Since moving became difficult, I lowered my water intake without realizing it. (To avoid extra trips to loo.)

When people tell me they just got DX MS, I tell them to drink more water. Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.
Too much IRON BAD.
WATER GOOD.
True for just about everyone!

Staying Clean with MS OR Pimp My Shower

Taking a morning bath was just routine for me. Usually was thinking about the day ahead. No big deal...until MS. There were the relapses where I could not feel my body--at all, so getting in and out of the tub I had was not a consideration. But it was about 2000 when I noticed that lifting my head was difficult, then one day I couldn't stand up in the tub after my bath. It was as if I had forgotten HOW to stand.

First I had my partner tell me how to move my limbs to stand. My mind's eye could not "see" it. Then zip, I would stand up like nobody's business! This went on for some months until one day I could NOT get out.

My partner filled the back of the tub with big pillows, then more ahead and next to me, trying to make steps I could use my knees to push up and out with. (This was after we drained the tub. Brrr) Finally I got out, but I almost tripped and the time had come.

We bought a plastic trash bin and tried that--too unstable.

The next day I went to a medical supply store and bought a grab bar that sat on the tub rim and easily attached by turning a plastic knob. Also a bench, but three choices--which to get? I chose a plastic chair with holes in the bottom. Our bathroom was small and where could we store it so it helped me without hindering my partner's evening bath?

First try and it didn't fit the tub, too wide. It spent the next 4 years holding our laundry detergent in a closet, located in our second loo sans bath. (washer and dryer were there)

Back to medical supply store, bought most expensive bench they had. I still use it, but the next one will have holes in the seat. This one makes it harder to clean where the sun don't shine. (At least not in Seattle!)

In my new shower, shown above, many grab bars are there. Not sure why so many...anyway I am able to swing in and out. (Though I have come close to falling.) Yes, I have gripper strips all around. It gets the job done, but were I to begin anew, I would set it up differently. That accessible dream house, with a yard for our big dog.

MS and Grab Bar Installations

I never dreamed as a young woman that I would ever be so in need of a good bar. Since the year 2000, a good bar is always nearby.

Depending on how far your MS has progressed, you too may find yourself spending much time with bars. Back in "the olden days," a good grab bar was hard to find. The purview of plumbers, grab bars were few and far between. Now, we can rejoice, because you can find them everywhere.

Some are turned tight to fit your tub. Some, like the one in this series of photos (yeah a duplicate slipped in before I could "grab" it), need to be secured through fiberglass tub/shower stalls with drills and screws.

Decide where you need the bar. Don't be shy, you may need several. If you have medical insurance or Medicare, they will likely be covered. (Get a prescription from your doctor; keep all receipts--tax deductible) Measure twice, drill once.

I contacted my local MS Society and they just referred me to plumbers. (Again, thanks for nothing, Local MS Society.) Luckily, my assisted living facility has a fantastic "handy man." He will put a bar of any shape/size wherever I need it.

Top photo is the best bartender in Seattle!

Next: The bar that was too big.

Next TWO: Tools of the trade.

Next: Close up.

Last: TA DA! The perfect grab bar in the perfect spot.

The previous apt. we lived in had been rented by a senior citizen who had a stroke. Her son-in-law had perfect grab bars all around the tub. After 10 years, I needed them placed differently. It is important, for safety, to make sure you get the location of your bar just right. DON'T wait until you fall. What can it hurt to be prepared? It is no voodoo curse to get your home in order for that moment you never see coming.

HAPPY HOUR! OPEN BAR! GRAB HOLD!

Rug of Squares

I finally bought a new rug. It has to be placed in front of my chair so that my feet don't slide as I do exercises and transfers. I just LOVE it.

Eating Plastic for Good Health

I have been so excited about all the fish that is served at my new home. Fish is so healthy for us. WAS so healthy. Today another news report about the increasing finds of plastic in fish. That grit in your super-duper cleaning toothpaste? Plastic that will end up on my dinner plate. Year after year the waters and fish are tested and year after year--more plastic. Yum.

Obama, Go To Hell

AP Photo: Maine Gov.-elect Paul LePage, right, predicts headlines about him telling President Obama to "go to hell." So much for any pretense of "compromise." Where does all this hate come from?

George W Bush, Pathological Liar Author?

Former president, GW Bush has written (? Okay-ee) a book. This seems par for the course of former presidents. "Setting the record straight" and all. The problem is GW has always seemed to have a problem telling the truth, along with a problem remembering what he has said in the past, since he so often contradicts himself.

He also uses "my advisers told me," "my lawyers said," "we all decided," "along with other countries," in front of his biggest debacles and acts of poor judgement. His blame game continues. I base my opinions on his book, from his interviews about it, excerpts read, and what I can get from Amazon's peek. I doubt I will read the book because I can see where he is going: same good ol' boy, cowboy, laugh-at-his-ignorance, retelling of his 8 years in office.

As a psychological joy ride of one man of power's mind, it might be a kick, but only under the assumption he really WROTE it, and it was not run past a factory of decontaminates.

It is good to hear him admit to thinking water boarding, that illegal torturing of detainees, is A-OK by him. Again, against, advisers and all research that such torture provides NOTHING that might help us gather useful information, but in fact puts ALL our troops in harm's way, GW Bush thinks it was great!

And his claiming we just HAD to stop Iraq's build up of weapons of mass destruction, which he admitted during his later term years that he had been 100% wrong about, blaming bad intel, now he is back supporting his decision to shock (no shock, he had talked about doing it for months, so the "evil-doers" had time to split) and awe-shucks the innocents of Iraq in his book. If it were any other president, I would be thinking: "Are you crazy?"

In the case of former president GW Bush, I lived those years and I already know that answer.
What I still can't figure out is if he is a pathological liar or just a boy that never grew up? For all his trashing on "liberal" entertainers, he seems most hurt by Kanye West's suggestion that Bush might be a tad racist. (Katrina and all) REALLY? SERIOUSLY?

I think I will wait for all the player's stories to come out about the disaster that was the GW Bush presidency. Then I'll try to piece together some particle of truth, because we need to learn from our mistakes (not that I ever voted for him or supported him, he completely lost any respect I would otherwise give to any president, when he all but gave the finger to the U.N.) and the Bush years had plenty of them.

But, like reading the 9-11 commission's report, I will read them only during the day--too scary otherwise.

Protected Rants on FaceBook

Should a boss be allowed to fire an employee who uses FaceBook for work-related rants? What if our boss was sitting on a bus and heard us trash on her and her company? Would it be okay to be fired for that? What about a thrashing on your blog?

Loving Your Boy Who Wears Dresses

There is a boy in Seattle who likes to wear dresses. I am sure he is not the only one. This began at age 2 and his mother has written a book for children about what her now 5 year old, who calls himself "A princess boy," experiences.

She never imagined there would be so much interest. People from around the world have requested her book. She and her husband have accepted their son's desire to wear dresses and "pretty things." But, some have ridiculed them, saying that no child at age 2 can know their sexual identity. I beg to differ and I am not alone. I knew. The often told story from my childhood was how I threw off and out a pink dress my mom put me in, from my crib. I preferred dark colored pants and my toy of choice was cowboy gear, guns, toy swords, and so on. My mother gave up and accepted after a short time, because I was also very stubborn. Everyone around me showed heterosexuality. Every book and TV show showed heterosexuality. I thought any day I would turn into, and be treated like, the boy that I was. In 1960 that was NOT going to happen. Suffice to say, my mom would have wanted this book too.

Dyson Kilodavis chose Cinderella for his Halloween costume. His parents offered sparkly karate outfits, no go. A trip to a psychologist proclaimed Dyson was perfectly happy with his sexual identity. No problem.

"The parents shouldn't let the kid do it just because he wants to," said Alajauan Adams, 27, a youth coordinator for a nonprofit organization in Washington, D.C. "I'm not here to judge if it's right or wrong for him to be an outcast, but the reality is he's going to be and you're not protecting him from it."

Really? He NEEDS protection from 27 year-olds like YOU, Alajauan? You just judged, juried, and gave his term: outcast. Meanwhile his parents are accepting their son as he is. They have spoken to his teachers and the teachers wanted a copy of Cheryl's book. Now other schools have requested it as well.

"I like to dress up in different kinds of clothes and jewelry," the boy offers on Seattle's local news station, KING 5's "New Day Northwest."
The host asks: " 'Cause it's fun?"
"Mm h'mm," Dyson responds.

An online radio blogger had this to say: "I mean it's just crazy. Your 2-year-old is picking out pink colors and wanting to wear pink dresses and so therefore you start buying him dresses? I mean a 2-year-old has not a clue as to whether they're boy, girl, fruit, vegetable or a rock." Oh yeah? Well, maybe YOUR kids didn't know at at 2 if they were a rock or banana, but THAT is a reason to try and spare your child from hard times ahead. Sorry to inform you that some research has show gay people have higher IQs than the general population.

Thank goodness there are parents out there like Dyson's. Support from parents trumps bullies at school and hurtful words. Is this "just a phase?" Uh, no. Yeah, I said it. I am waiting to hear from all those heterosexual men who wore dresses as boys, preferred Cinderella over GI Joe, then suddenly "grew out of it." Haven't heard or read about one yet.

Does this mean if your boy DOESN'T want to wear dresses that he is not gay? Sorry, no. And that is why The Princess Boy is such an important book. We need to discuss all this. We need to not be afraid that our children might be so different that they will be outcasts all their life. Remember: Outcasts are not born, they are made by people of ignorance and intolerance.

Shine on, Dyson!

Is God a Monster? Is Faith Important?

I think about God every morning before I begin my day. I mean I REALLY THINK about God, mostly the baby daddy Jesus God. Matter of fact I think about God more in the past two years than I probably have my entire life. My Bible is nearer to me than, well, than it ever was.

No, not because I have MS and it is progressing these last 20+ years, but because a blog has me hooked. Almost every post is about God or religion. He was raised in a strict Baptist family from the south. (enough said) He is a grown man who has named his blog, "Groping the Elephant." Read about the tale of the search for truth here.

Anyway, initially I found myself agreeing with his every post. (Oh, wait, initially he had a blog about the right wing extremist nut-jobs...whatever.) Lately, I find myself defending the faithful. And while I consider myself a woman of science, the Bible being a one religion of many books of stories meant to teach rather than show people history, I also seem to believe religion can be a good if not wonderful thing.

Religion is a tool. Tools can build houses for the homeless and be used to murder someone with a hammer-blow to the head. Just as the computer is a man-made tool, it can be used for good or evil. Such is the tool of religion. Many have died under its blow, many have been re-born and found peace. Humans are always making tools.

The current topic at my 'Blog of the Day' is the true story of a 2-year-old who was seriously injured by a falling rock while hiking with his family. The family is praying and thanking God for the fact that a group of medical types were also hiking nearby that day and they all helped save her boy's life. The mother also feels God "orchestrated" the event, making sure all those EMTs and nurses were nearby.

The blog visited that idea and wondered how a loving God would be so cruel. His conclusion was " My religious friends that I asked about this have no problem whatsoever with the idea that God might have created or "allowed" this situation in order to teach the parents some valuable lesson about faith and trust or some such. Can God really be this way?" and "Okay, I may have myopia. But I can't bring myself to worship a God that employees cruelty and pain to further his agenda. Nor have I the intellectual capacity to imagine a compassionate God who revels in eternal torture, especially for the "sin" of ignorance. That is sadism to the nth degree. Or as one theologian once said, "Your God is my devil!" Ten times better, no, ten thousand times better, is Rabbi Kushner's impotent God - who at least cares but is limited in power - than the monster my reader defends."

He concludes God is a monster if he hit that toddler with a rock and sent an earthquake to Haiti.

I don't see the elephant's trunk that way. I see faith being the corner stone of religions. Life sucks a lot. It is a cruel shadow that eventually kills us all. If there is one thing we all share it is birth and death. The elephant in the room is the hows and whys.

Faith in their Christian God has given the family of the injured toddler some peace and strength to go on. Will the experience strengthen faith in those who helped the boy that day? Probably, since we all take a step back when we are in the right place at the right time OR the wrong place at the wrong time. For most of us, we are just in a place neither more right nor more wrong, most of the time, so such events have a profound effect on us.

Our part in other's lives is so crucial to our spiritual growth. And grow we must! You have seen those who do not grow, like a shriveled plant that never made it, wilted and always at death's door. Even if they run marathon's and have many friends, or keep ending up in rehab, alone and defeated repeatedly, their skirt of spiritual emptiness is showing.

You are gay? No way I am defending religion to you? Not all Gods are tools for gay-haters. Hell, Native Americans worshipped YOU! Christians are much more understanding about homosexuality since science stepped in. And to the rest of you Christians, surprise! Homosexuals can be Christians too, why, they even have their own churches! Just as Hawkings claims we came from nothing, so too are Atheists a tool of religion. Now we "see" no belief is a belief, with a faith in no God giving to many, peace of mind. That elephant again!

My Blog Du Jour got a "fan" email and the writer took exception to the idea that God did not have his reasons for making the toddler a lesson for others to learn from. For the emailer, that trunk on the elephant 'looks' much different. The emailer calls my blogger, "myopic."
Funny that, as myopic can mean near-sighted or short-sighted and narrow-minded. Same word, but can be used to mean you can only see what is in front of your face OR it can mean you can't see the big picture and won't open your mind to new possibilities.

What? Both an elephant's ear? Not to me. That microscope can show you DNA, LIFE, all that you are--is that not the big picture? I am near-sighted, but I can feel my DNA in my mouth, without GLASSES! I can not see my cells, but I have faith they are there. Why? Because I read about them in a book. I have faith in science. I have faith that something good may happen today and the sun will shine.

Interestingly, the tale of the blind men and the elephant is meant to show how people come to conclusions based on only what they know, discarding what is in the dark. It is often used by various religions to show that point. But, the religions can't quite decide exactly what the tale is truly meant to teach, and people today still debate the simple tale.

Perhaps since we can never have all the facts, at some point we must have faith in ourselves. I also have faith that I will never have all the facts. And as I take off my glasses, key my final words, I have faith something good might happen today. I fear no monsters. I fear no books or tools. Doesn't mean they won't be used against me or you; but, I have faith that when my eyes close for the last time there will be no elephant in the room.

Growing Up in Lebanon: Mulberry Juice Dress Author, Missionarie's Daughter

This is one of the authors at my retirement community, Maggie (Margaret) Freidinger Kraushaar. She is holding a copy of her book, "The Mulberry Juice Dress."

It is rare to read a true coming of age story from a young girl's perspective that takes us through the life of a missionarie's daughter in Lebanon. With humor and grace, Maggie tells of her young life in exotic Lebanon of the early 1900s. She struggles to understand her stern father, devoted to his Christian religion, and after moving back to America as a young woman, she eventually finds her truth and a deeper understanding of her family.

The book is written with great talent and an obvious love of human observation. You will laugh, cry, and look at your own family with a new perspective.

When I pass Maggie, as she struggles to walk with her own health issues, she always takes time to stop and share some words. I can see at once the young girl in the mulberry juice dress and the older woman who has gained much wisdom in a full life.

We all have our stories here. I am so glad Maggie put hers into book form for all to share.
The Mulberry Juice Dress is available at Amazon.com

When I See Your Face

Starbuck's Not Your Granchild's Face Book

Okay, I admit it, I have some guilty pleasures. Starbuck's. I love the taste when that first sip cuddles my tongue, then slowly slides down my wet palate. I love the warmth against my hand of the soft paper cup, giving just enough to make me want to keep holding it. The aroma when I enter a Starbuck's, oh, how it engulfs my very soul with delight and desire. I want. I need. The jazz music soothes my ears, my body starts to sway and unwind, loosen up as though I had just entered a universe of sandy beaches and cool breezes off of a warm ocean shore.

The wood is rich in color, but light, not too dark, of the chairs, tables, all beckoning me to join them. They are clean and feel smooth to my touch. I want to become one with them. I imagine my home is completed with such inviting chairs and tables where friends will seat with me and we will share stories. And at Starbuck's there are always friends. Complete strangers when I enter, but soon I will know their names and where they work, what they dream. We can tell each other anything. This is not your grandson's Twitter. We can speak as much as we want, not Fascist denial of "characters." I network, get business cards and pass out mine--that's right I have had a business card for 25 years, first with the City of Seattle, then as an "Advocate for People with Disabilities"--my name, I am a person who takes part in life beyond my wheel chair--this is not you child's Face Book. No advertisements or game playing. Real people, real avenues to use their services and get to know them personally first.

Baristas are friendly and they greet me, by name after a few visits. They remember me. Someone remembers me. When I worked, they would see me coming from blocks away and have my drink ready when I arrived! I didn't pay them for this, I am not the often wealthy, upper-middle class (look that one up in a history book), customer--I rarely tipped, the coffee cost was breaking me. Four cups a day during my working years. I always expressed my appreciation though and they understood I couldn't afford both coffee and tip every visit. Though once I may have stopped a burglary. I'll rationalize my cheapness somehow. Howard Schultz loves me, I am good advertisement. Yeah, that will do.

My Socialist and radical friends hate Starbuck's--ok, I understand and they have good reasons...but I desire...I love. Is love not worth the pain of a heavy burden of self-hate for not being liberal enough? I will carry that burden for the chance to spend time in a Starbuck's and fall in love.

Faces of Neurological Diseases

Mary and Diane, Huntington's Disease (HD) and Multiple Sclerosis (MS). We are more than our disease. More importantly, have you EVER seen a board game THAT huge? (Sequence)

Gene Test-Do You Want to Know? Exclusive Interview with Mary Bunch, Huntington's Patient

I had the privilege of interviewing Mary Bunch, a resident at the retirement community I live in. Mary has Huntington's Disease (HD). We meet for conversation and board games on a weekly basis and became fast friends. Mary has had a worsening of symptoms in the past 12 months.

First some info about HD: "Huntington's Disease: a devastating, hereditary, degenerative brain disorder for which there is, at present, no cure and only one FDA-approved treatment (Xenazine) for a symptom of HD.. HD slowly diminishes the affected individual's ability to walk, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.

Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.

Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure." -Huntington's Disease Society of America

Diane: Thank you for allowing me to interview you for my blog.
Mary: Sure.
D: How long have you had Huntington's?
M: I was diagnosed in 1995. I had a gene test. But, I knew before. I had symptoms in 1985.
D: And your father died from Huntington's?
M: Yes, it is hereditary.
D: You have a sister. Does she have Huntington's?
M: No.
D: From which parent did your father get the gene?
M: His mother and father both had Huntington's.
(Mary shifts her limbs often as we talk, and her answers are sometimes slow in coming as she struggles to connect her thoughts with her ability to verbalize them. I give her all the time she needs.)
D: That must have been scary knowing that your grandparents and father all had the disease.
M: Yes.
D: How did your father die. You have mentioned he was in his 70s.
M: He choked on a cheese sandwich. My mother called 9-1-1, but she was able to pull it out before they got there, but he died.
D: You were there at the time?
M: Yes.
D: What is your biggest fear about your disease?
(She struggles with this and we had earlier discussed our mutual fears about running out of money for care services. Her eyes turn a bit red as if she might tear up.)
M: Choking.
D: What are people around you supposed to do if you start choking?
M: I don't know.
D: Call 9-1-1
M: Yes.
(Choking is a major cause of death with Huntington's and the average life expectancy after HD onset is 10-20 years.)
D: You adopted a child because you knew you would pass on the gene, right?
M: Right.
D: What has the disease taken from you that you miss the most?
M: Walking, hiking, bike riding. I wanted to go back to school to get a degree in nutrition, be a nutritionist. I have a degree in interior design.
D: When I first moved here, I would see you walking many blocks every morning.
M: Yes.
D: You had the gene test. When there are gene tests for Alzheimer's and so on, some people don't want to know. You wanted to know.
M: Yes.
D: So you could plan?
M: Yes.
D: What did you do, plan?
M: (She struggles to answer and seems to be fighting back tears.) I...
D: Like you made the decision to adopt?
M: Yes. Like that.
D: You inspire me.
M: I do?
D: Yes. You seem to have such a good attitude about your life and all you have gone through. What words of wisdom could you give people reading this? (This question makes her laugh at the idea she has wisdom to offer. I assure her that she does!
She squints often as she struggles to verbalize her thoughts. Her mind is sharp.)
M: Hang in there.
D: Why? Many people would just lay down and give up, but you show up, play board games, go to the group dining room...
M: Something good might happen.
(We both smile.) Why do you keep going?
D: I guess it is my curiosity. I want to know how this story ends. (I gesture to my body.) I am not made to give up. It's not in me. I might meet someone like you!
M: I met you too.
D:Was your father like you? Did you learn from him?
M: Yes, and my mother too.
D: Thank you for talking with me.
M: Sure.

I am so honored to know Mary, and I will never forget her.

MS: ENTER THE DECISION ZONE

Decisions, decisions, decisions, MS causes me to suffer from DO (Decision Overflow). Now I need to decide what I believe about the much talked about MS "miracle cure" CCSVI (Chronic Cerebrospinal Venous Insufficiency) surgery. A little balloon in a vein and I'm on my way to recovery! I've always liked balloons.

In 1990, I had to make a decision about going into the Copaxone trial. That would be the first of many therapy decisions I have had to make. I hate this process because I never feel I have enough data to make a good decision. Nothing offered ever makes complete sense. Nothing but keeping up with general good health habits like diet and exercise and basic body testing.

CCSVI is not passing my test. I have to use all the information I can collect about it, then think about my and other's (I know IN PERSON) MS experiences. Blogs are helpful, Wheelchair Kamakaze has a fantastic post about CCSVI here. My local TV station ran a story about some people from Seattle who are demanding it and the thoughts of my (so far) favorite neurologist.

Here are some unanswered/mysterious questions that need an answer to pass MY test:
Why is myelin never mentioned? I thought MS was like electrical wires with the insulation being torn off, thereby causing shorts. I'm not hearing how CCSVI will repair myelin, even though my own body once repaired it. No talk of MS being a CNS (Central Nervous System, which includes brain, spinal cord, and every nerve.) attacker, just a lot of talk about plaques in the brain.
I had a HUGE plaque in my brain in 1990, but by 1993 it was completely gone. Where did it go? Docs have no clue. So who can say a drug or CCSVI repair can make fewer plaques? Fewer than what? Fewer than how many?

The people who had gathered to speak in favor of CCSVI (on the Seattle TV show) were all sitting on bleachers just fine, no wheelchair in sight. What was their MS stage? Newly diagnosed? Relapsing/remitting? If so, I am back to same problem I have with the DMD (disease modifying drugs)--MS naturally relapses (goes away) in the majority of new cases, sometimes never to return.

CCSVI does not help everyone with MS. Why not?

The Youtube videos show people walking quite loopy. How were they before and why wouldn't they all have taken a "pre" video? I NEVER walked loopy. I was slow and sometimes the leg would not lift or foot drop, but the walking I have seen is...interesting. I base this not just on how I walked with progressive difficulty, but also have watched friends with MS as they would attempt to walk with cane, walker, commando. Sure, I know everyone is different, but wouldn't I have seen ONE friend walk in such a manner? I have seen people with OTHER diseases walk like the YouTube videos, but it seems to show either a strange walk or a perfect walk. The perfect walk after DX, I have done. I even ran one day! (Last time I ever ran too.) All this years after DX, while 6 years after DX I could not MOVE from chair to table just 3 steps away. IV Solu-Medrol and I was back A-OK and that full body numb never returned. (The full body MS-numb kept me from walking.)

In other words, YouTube is not verifiable.

People are rushing to decisions. gives me time to see their outcome. Researchers need to use proven methods to test this new "miracle." People live with CCSVI and have no symptoms of anything, according to vascular doctors it is not terribly uncommon, our veins are very small--it happens and the blood just uses another vein.

Off point, but why are people with MS so fear driven upon diagnosis, while the rest of society doesn't seem to care so much? If MS is so horrible (and it IS) then why can't the places we donate money to make this a priority---awareness of the horror? Instead society has been treated to stories and photos of those with MS who scale mountains and star on TV shows and do just wonderful things! People who live with normal course MS need to be shown, in our eventual wheel chairs with pee bags at our side.

Why do some people with MS not have CCSVI? Who can say CCSVI is not just another symptom some MSers get? Why do some people with CCSVI NOT have MS? Too many unanswered questions for me to make a decision right now. Am I running out of time? Well, in 1990 at my DX, I was told people with MS by and far have a normal life span, minus a few years. I am secondary progressive and haven't had a relapse in 6 years. The progression is slowing pretty good and I am even improving in the last year. So...

Of course, if you follow my blog, then you know I am not surprised neurologists don't want to refer patients for testing. Nor, am I surprised that this whole idea makes BIG PHARMA sweat injection needles! Both stand to lose a pile of money.

Another decision. Just another day with MS.