Saturday, November 8, 2014

HERE I AM IN NEW ASSISTED LIVING HOME

Here I am in a new assisted living home.

Here I am wondering if I should run for president of the resident council again.

Here I am waiting on a new wheel chair.

Here I am planning how to walk again.

Isn't there a pithy quote about doing the same things over and over? Insert it here.

Already made new friends here, that is always the fun part, but will I find out in a week or three that they have dementia? That truth is they don't know me from Minnie Mouse?

I am told there is a younger woman here, about sixty. Well, I usually get along better with the older crowd.

Missing place that wrongfully evicted me, still stings.

Here I am.

Sunday, October 19, 2014

Royal Bird: Paralympic Meets Cauda Equinq Syndrome in Wheel Chair Racer

http://www.kptv.com/video?clipId=10680275&autostart=true

Yen Hoang is a wheel chair racer and student at Evergreen High School. Her name means "Royal bird" in Vietnamese, and very fitting as she flies around the track in preparation for a Gold Medal at the next Paralympics.

She is paralyzed from the rare disease called Cauda Equine Syndrome, a rare neurological disorder. 

While she has been in a wheel chair since age four, this fact has never stopped her from wanting to compete and be the best in both basketball and track.

I first heard about Yen from her sister, who is one of my caregivers at my assisted living home.
"How can I not be inspired by her?" she says matter of factly.

Indeed we all should have the desire to do our best no matter the odds.

GO YEN!

Saturday, October 18, 2014

WRITING WITH MULTIPLE SCLEROSIS


I am going to start using my voice recognition technology on this new computer.

Well, 10 backspace facts face the rate OK we were working really well over sentence.

Ed own, OK that was a clearing of my throat.

The A’s and it’s fun to share his newest variance with me.  Oh boy, that says rarely got screwed up.  Again last try, that paragraph rarely got screwed rarely got screwed up rarely got screwed up.  Sigh.  OK

 

And OK, this is going to take forever.  And now you understand, why voice recognition is not easy for people with ms.  Capital ms.  Ms capital.  Her were her all listed writing me crazy.  This in driving me crazy and what a waste of time.

Oh   well, I tried.

Stay tuned…I will try and type normally, but, of course now I am tired. And so goes living with MS.             

Wednesday, October 15, 2014

The Alzheimer's Beginning For My Mom

"I think I'm getting that Alzheimer's," my mother told me over the phone call from my home in Seattle to Fort Wayne, Indiana. She was 59 years old. It was 1987 and senility's name of Alzheimer's was on every TV news report. My 80 year. old Great-aunt Violet could be heard in background saying that she had it too.

"Mom, why do you think that?"

"I keep forgetting  things."

"Like what?"

"Like where I put my shoes."

Laughing, I replied, "Mom, when you forget what shoes are for or how to tie them, THEN you have Alzheimer's! It's just in the news right now. Tell Aunt Vi not to worry."

We both laughed, no phone call ever ended without us both laughing.


I suppose, looking back, Mom had more symptoms than she let on. And I Knew much less about Alzheimer's than I do now.

Tuesday, October 14, 2014

Tilt Power Wheelchair Plus More! Pimp My Ride!

This is my soon-to-be power chair. I tested it out yesterday.

$26,000.00, no worries, I only have to pay $5000!!

The chair will let me stretch out and when delivered, it will be made to fit all 5'6" of me.\

Wow, I remember the days of my DX MS when there was one choice of chair. FDR days are long gone.

Monday, October 13, 2014

Life Expectancy with MS?

My new Microsoft Surface is great, I'm sure---so much to see and do! But, Diane is 57, old for someone with secondary progressive MS...or is it?

One of the first things most of the "MS community searches online is "How long will I live?"
Of course,  no  one knows when an airplane might land on them, but if you mean (and you do) "How will MS affect my life expectancy?" I will tell you what I have learned.

When I was DX (diagnosed) in 1990, I was told my life expectancy was 78 years.

People with MS can live into their 90s like everyone else. Something besides MS will kill you. (even if your obit says "donations to MS Society.")

Yesterday I met a resident and his wife at my assisted living/retirement home. When they learned I had MS, she told me her husband's sister was diagnosed with MS at about age 38 and is now in late 80s, "In wheel chair like yours."

Me thinks, after seeing many MSers at the big "MS Center" in Seattle, that I am lucky to have my mental capacities seemingly un-attacked. (MRIs confirm this.)

If I can continue my exercise routine , eat healthy, laugh, write, love and be loved, my years should be many. Keep living life as you would, just stay flexible/adapt. Everybody has some physical obstacle, be thankful you are not battling cancer, AIDS, EBOLA---really, 50% of MSers won't miss a beat and they can do BIG PHARMA commercials!

Carry on.

Sunday, October 12, 2014

NEW COMPUTER, NO MORE HORSES

I bought a new computer. Do you remember your first?  I can't.

What was it like when cars were first made? I remember my first.

Yes, also remember our first TV set...but can't recall my first computer.

Bill Gates said there would be one in every home--I laughed at that, now many kids get them at school, as we might get a pencil...nope, we had to buy our own pencils.

Technology really shows our age. I still can't cut and paste on this thing and what is MOBI?
Oh, right, I'll Google it.

Gone are the days when we had to search our brains. Engines for that now.

Gone are horse and buggies. Was it so long ago?

My great-aunt Violet in her teens, 1907-2006

Saturday, October 11, 2014

TETRAPLEGIA: MY NEW LABEL IN MULTIPLE SCLEROSIS LAND

Of all the things that living in an assisted living home could do to me, I never thought a few caregiver girls could do this; but, they did.

If you have followed my blog over the years, I have diligently kept to an exercise program of my own making and it always included weight lifting, plus standing and daily attempts at walking with a walker. Since I was diagnosed in 1990, dedication to healthy eating and exercise has kept me living not just surviving with MS. A few horrible months of my regimen in disarray has ended 24 years of success.

Once there was a buff Batista near my home. I stopped for java and conversation daily. He was gone a few weeks and I barely recognized him. He educated me on how long it takes to get back 'in shape' and how quickly the body loses its advances in tone, muscle-building. I was shocked, certainly I understand now. By not correctly transferring me 4-8 times a day, over 4 months, my body became much weaker.

Add to that, the daily stress of never knowing if I might be dropped or spoken to in a demeaning manner, MS was not happy. I am a tetraplegia, apparently I can now enter the Paraplegic Olympic Games! Oh right, must get in shape first. Darn if there isn't always a catch.



Friday, October 10, 2014

MOVING ON WITH MS

Well Howdy Do and I am back again!

I have (finally) a new computer, so here we go!

As 'tis said: Where to begin?! So much has happened since last I was able to write.

We were evicted, the reason, TRUE reason why, still eludes me. At this point, all legal eagles busy, there little I can say. But, be assured, the story will come out.

For now we shall focus on the point of this little blog (reread its heading if need be;) and I must move full speed ahead on my books. I hope to be able to make time each day for my blog. It and all my readers have sustained me through rough times in the past---I owe you what I can give.

My new home is, well, like a palace. How long will I be able to afford it here? Your guess is as good as mine. For now I will enjoy each day.

Nice to be back!

Saturday, August 9, 2014

EVICTED FROM ASSISTED LIVING HOME

Well, this is certainly nt the blog post I expected to ever be writing.

After all the photos I took, after all the adventures I had. after all the deep love I felt for my new home in Ballard---The Ballard Landmark gave me a 30 day eviction notice. I must be out by Sept.6th.

Diane. how could this happen? My fingers are weak, my computer is hot on my lap (bladder) so I will give you the Cliff Notes answer and ask you to wait for my book, article, or TV reports: The Assisted Living Supervisor (an RN I am told) says I need a 2-person transfer and they don't offer that. For my safety and that of the community (?) I must go.

Now. ever since being given that notice,the carers here (young, one just turned 21) have been continuing to transfer me using one person as usual. Make sense? Not to me either.

Before we moved here I met with the AL (assisted living) supr. three times, each time asking if they do pivot transfers, as that is my most crucial need, to get to toilet.

Resoundingly from all aides around and the boss lady, "Absolutely!" and "We do them all the time."

After I moved in, paid my non-refundable $5,000 "community fee" not one person seemed to know what a pivot transfer WAS, even last week the Manager of place couldn't pronounce the word "pivot," jokingly stumbling past it while I corrected her.

The first person to answer my call for a trip to loo back on day we moved in, May 3rd, 2014. dropped me to my knees (and she was one of three LPNs they keep on duty here), only my spouse's race to shove up my knees kept us from a call to Medics to pick me up off the floor. That led to the young LPN shouting such things as I should have been assesed, I didn't belong there and so on. Her tone and continued berating of me ( as I sat, still needing to use the loo. "I don't feel comfortable transferring you." I became furious, "You ar going to leave me here to  poop in my wheel chair!?") was sp unprofessional and frankly atrocious. If I were her boss I'd have fired her. But another carer finished moving me to loo (also not able to do any pivot transfer, just swinging me like a bag of dirt, and the 8story was that it was all my fault. I was trouble.!

Saturday, August 2, 2014

Parrots, MS Healing, Healthy Eating and Making Friends Off Face Book

Here we are in August already! It is a much busier lifestyle  for me at the new joint.
 Photos in no particular order: the first is a, I don't know, poster(?) a Face Book friend made from something I wrote. I really think blogs are a dying breed. They are over-produced or just a diary. Times change fast.
 This is my spouse playing a classical piece on piano at our new place. At the OLD place their piano was warped, out of tune, and parts missing. What a difference. I didn't even know spouse of 35 years could PLAY! She hadn't played in 40 years! Just sat down and off she went--amazing, even though I had done the same thing a few years ago. I guess those piano lessons stick with ya.
 Here is my healed knee. I bought some roller derby chick knee pads, soon to be tried. This has been another set back, but forward is direction we must always set sail.
 Look at this wonderful lunch! Fresh soup, stone ground wheat crackers, cottage cheese and watermelon! When I think of the horrible meals at the former place...just wow.
The most (well, it is hard to choose) wonderful aspect of our new home is the incredible neighborhood--Ballard. We are just a block from, well, EVERYTHING. Out our backdoor is a Farmer's Market each Sunday. I took pic of a parrot there.

Residents have approached me to say that they too have MS. So many interesting new people to meet here. So much better than Face Book, or, I'm sorry, a blog.

My computer is old now and a hassel to use. I'll buy a new one if I can.

Thursday, July 3, 2014

BALLARD BELL TOWER AND WALL ART


Look what I found on side of local grocery store--ART! I just love this neighborgood.
 
Below is bell tower that was here when we lived a few blocks away back in 1992. Since then it has been restored and get ready--it chimes on the hour! What a lovely sound, and now it is just half a block away.

Wednesday, July 2, 2014

MS FALLS, KNEES DAMAGED, MEDICS TO RESCUE

Wouldn't you know I fell again!? I told my caregiver to step back, so full of myself! In an instant both of us were ecstatic that I was finally transferring my own body again  and then BAM, both knees just gave out, both of us horrified.

It was 3AM and there I was trapped between my heavy power chair and the ceramic thrown. The poor carer pulled with all his might (I had the bruises to show it, in fact the knee scraping was due to his and the summoned medics trying to lift me up! The medics finally lifted my chair away and two of them got me seated back in my chair,) but I was stuck between too heavy devices. He couldn't release his grip on me to call the medics and my wife (nope, don't care for the sound of that) my spouse was sound asleep.

Finally he laid me down and five firemen arrived. Immediately they went for my wrists and having had them give me radial nerve palsy for 6 months before by "wrist lifting" I quickly took over and shouted how to pick me up.

Within 15 minutes it was all over except bruises and two badly scraped knees. How lucky am I to never break a bone? To never hit me head? VERY LUCKY

Both knees good as new now. MS strikes again! Back to the gym, young lady.

Tuesday, July 1, 2014

MARRIAGE EQUALITY AFTER 35 YEARS

 A Face Book friend recommended a site where I might find an officiant to marry us. The first person who replied was Pastor Dave. He was from the Church of Spiritual Humanism in our area. "I thought we might chat," he said.
I responded sternly in my deepest voice, "Go ahead."

He then told me two stories about himself, his reason for doing such unions, his orphanage work, basically exactly what I needed to hear: this was a man of integrity. An air of integrity is what I wanted surrounding our small apt. wedding ceremony.

Five people is all you need for a wedding: The officiant, a couple wantin' to be hitched, and two witnesses. I made sure to have a spare witness just in case.

My attendees gifts to us would be their time, energy, and effort to make it to our new assisted living home, knowing there would be no food, drinks, music, dancing, and after the "I do" would be a "thanks for coming, now go."

When you are partners who have been denied the legal right to marry for 35 years, both sicker, disabled, no longer the spry young lovers of 22 years old, a quick simple wedding is the greatest gift we could imagine.

I feel very lucky to have lived long enough to experience this day of equality, but must juxtapose that with knowing so many still are denied the freedom.

Monday, June 23, 2014

I GOT MARRIED!


Thursday, June 12, 2014

MS BRACELET STARTS CONVERSATIONS


"She has such beautiful hands," Dottie, Aunt Violet's friend said as she stroked my 12 year-old fingers. Somehow in my chubby body, my fingers have remained long and thin.

Now why couldn't the rest of me followed suit? Ah, life!

Photo is of a "new" MS rubber (I think) bracelett. Since "MS Awareness month is winding down (and plans for my wedding are gearing UP) ---here is my on line contribution.

In fact, when wearing the first red "HOPE" ones n the early 1990s, they did open some conversations about MS.
http://madestrong.org/products/made-strong-t-shirt-1

Wednesday, June 11, 2014

MADE STRONGER BY MS? SHOW YOUR PRIDE



My new neighborhood has beautiful brick sidewalks, but they are a bear to roll on and walker, forget it. Canes are easier, but my MS has moved to a power chair. Begs the question: are w born strong or does fighting, embracing MS make us so?

Perhaps a little of both! Made stronger due to MS? What fighter doesn't get stronger after each fight? Who isn't stronger (physically or mentally) after falling down 9 times and getting up 10?

Get your Made Strong t-shirt at www.MadeStrong.org
10% of profits go to Race to Erase MS which funds MS research through Center Without Walls.
(They also sell very cool wristbands!)

Monday, June 9, 2014

PHOTOS MY NEW LIFE IN NO PARTICULAR ORDER

I just am collecting so many pix of my new assisted living home neighborhood, must share: all were taken within a block of my new home. You will understand why I LOVE it here!
Out the back doors (with push buttons to allow access to me & my power chair)  is a small, brick, street loaded with small shops and great charm. Every Sunday is a Farmer's Market, always packed with vendors, musicians, and people! 

 Here is my first problem, my toilet seat is not compatible with former toilet. Maintenance and I will figure it out.
 Another musician.
 Another dog.
 Our apt. with "Home Sweet Home" Habitat for Humanity bear greeting visitors.
 I had to decide which cap to wear, my Seattle Storm (our women's pro basketball team) hat said, "CHOOSE ME!" so I did.
In the Starbuck's the woman in pic came up to me, asking how I liked the team, had I been to the last game (I've never been to any pro game here) and she offered me tickets. "Call me anytime you need tickets." She turned out to be one of their coaches!

 There is 'street art' everywhere in Seattle, and MUCH in the block of my new home. Like the trees?

Here  is "Bible and Coffee" on that quaint little street behind my home. Hmmm,  I will check it out.

A homeless Vietnam Vet selling a small newspaper, "Small Change," that helps the poor make some money. Many of their articles written by the down and out who need a break. Today he got some dough for posing for a blog.

I just LOVE living here!

Saturday, June 7, 2014

MS PERSPECTIVE FROM A SPOUSE WITH ENDLESS LOVE

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

Friday, June 6, 2014

Staying in Shape with Progressing MS


When all was said,checked as noted in previous post, the gym at my new home is what sealed the deal for me.

With more modern equipment than in many big-name franchise exercise clubs, this is, I believe, my last chance to get stronger and healthier in my fight against (and embracing of) multiple sclerosis.

 
Outpost