Coming Home

Home is great--but I do have to be honest and say I miss many of the new friends I made--staff and patients. Everyone has a story and I heard many that were fascinating capsules of lives well lived. They will always stay with me.

Today was beautiful once again and I got to go out with a couple of friends.

I need the change.

I'm adjusting to 24 hr. care but still find it strange. Stay tuned.

Beautiful Day!

This is one of the many wonderful pathways at UBC, near the hospital I was in.  Squirrels entertained me on my outings. The trees on campus are so varied in species as are many of the shrubs and flowers. I enjoyed every outside experience. 

My hip replacement is continuing to heal but I still can't sleep on either side. I dream of the day. The Doc said it would be 2 months because of the weakness from ALS. Patience is a testing virtue.

Tired but adjusting to home

For those of you who haven't been out to the UBC campus for awhile, this is part of a new development on Westbrook, across from the War Memorial Gym.

On one of my many outings while in hospital, I explored the new construction.

The roads and pathways on the campus are perfect for wheelchairs.

As many of you know, the weather co-operated for me during my stay.

I'm getting settled

I'm very tired for some reason but getting settled in.

I hope to post pics from my rehab adventure and the UBC campus soon.

Thanks again for all your support.

Love,

Karyn

Home tomorrow!!

I'm doing well and will catch you all up when I'm home and settled.

Happy summer!

Days are going fast

I'm sitting in Starbucks  on the UBC campus at the corner of East Mall and Agronomy St., sipping a caramel macchiato and writing to you. I wonder what my friends like Cynthia and the members of my writing club and others have been writing and/or painting?

My ALS pals, I'm sure, are making the most of each day and facing challenges with more panache than King Henri the lV. 

I can now sit myself up on the side of the bed and get myself into bed with baby transfer steps. 

After I'm home I'm ordering a new wheel chair with all the bells and whistles. With power recline and tilt, I'll be able to snooze in my chair. It will be the new model of the Invacare TDX SP. The reasons I chose this over the Permobil were:

Smoother ride over bumps outside(good shocks)

Tighter turning radius indoors(mid wheel drive)

Good back support for me

Parts are easily available for repairs

Cost is about 32,000.00 but my insurance is paying for most of it. Hooray for that.

It will be "Grasshopper Green"..fits my personality and can be easily seen by cars.

I'll try to include a picture and link to site for other ALS PALS. I demoed both Permobil and Invacare and was surprised at my choice. 

I'm feeling good and have little pain. My shoulders are weakening making dressing difficult but I have help. My goal is to be cruising up Granville street soon and down to Granville Island and sending you photos of my adventures. I still love life, have met many fascinating people in hospital, and have regained my fighting spirit. My 97 year old room mate calls me "a wonderful soldier." 

Please keep the good wishes flowing as I love all your comments online, by card, and in person.

I have the best group of friends and family a person could have.

Love to you all,

Karyn

Another day closer to home

I'm working through the organization of going home with careworkers full time. VERY expensive.

Everyday brings new progress and some ALS weakness to challenge me.

Right now I'm in the UBC Science Centre enjoying a real cup of coffee and the computer. I have to leave soon to practise walking with my walker while the the physio hangs on to the back of my britches. 

I'm loving being on campus with the young people even if my home is  hospital. This is a gorgeous campus to scoot around in a power chair. The local coffee shops are getting to know me. There is something positive in this painful experience.

Love to everyone,

Karyn

I'm going home on the 24th!!

I just managed to get online through a dear friend at UBC.

I want to thank you all for your prayers and well wishes.

I've made good progress and can hobble with walker to transfer from bed to wheelchair etc.

I am working hard to maintain strength and balance.

Soon I will be home and bombarding you all with pictures and trivia.

Keep sending healing energy.

Much Love,

Karyn

PS I'm emailing from the UBC Science Building and feel like a student again!!

Sorry it's been so long between messages must confess I've been tardy,anyway here's the latest news from Karyn,over the past 2 weeks she has physically improved,she can now stand and transfer from bed to chair and is currently testing new models of power-chairs that will allow her more flexibilty,she gets dressed and goes for physio every day and ventures outside for coffee or to sit in the garden for lunch with friends,she now has access to her laptop so that is really positive because her main complaint is that she's bored.

Tomorrow a couple of friends and family will attend a meeting with Karyn and her health care team to start the process of arranging the care and support she needs to return home,she's hopeful that might happen next week.I will post another message when we have information about her discharge.

Barb.

Hi everyone it's Barb with a message from Karyn,she remains in transitional care and is making slow but steady progress,her pain has decreased thus allowing her to become more mobile,she is getting up to walk a short distance every day with the physiotherapist and spends 1-2 hours up in her power-chair,at last the weather here is improving and today 2 friends were taking a picnic lunch and hoping Karyn could eat outside with them,she certainly doesn't give the facility's food a high rating so we are trying to supplement her meals,she is of course looking forward to her return home and we will assist her with the planning for the care she will require,all for now.

Hi everyone,this is an update from Barb,Karyn was transferred to the University of British Columbia hospital (UBC) last Friday,she is currently residing in a transitional unit where she will be able to participate in a rehabilitation program which will prepare her to return home,she believes she'll be there for up to 6 weeks however this week we are hoping she may have access to her laptop and then she'll be able to send you messages and updates,if however she doesn't have computer access I'll post periodic messages so that you're aware of her progress,all for now.

Barb McDermott.

Hi everyone my name is Barb,I'm a good friend of Karyn's and she has asked me to post this message to let you know that she had an unfortunate fall on Tuesday April 7th and has broken her hip,she had surgery on Thursday the  9th and is now recovering in hospital,she does not have access to a computer but is hoping that may change within the next week,she or one her friends/family will keep you posted.

2hr. ride through my neighborhood

All the Magnolia trees and spring flowers are bursting into bloom. I took these photos while on my warm and sunny adventure.
The cherry blossoms along 7th will be out soon. Today was that kind of day when all seems right with the world--just don't watch the news!

A question for the locals

This picture was taken in 1957. Where is it?

Patience

New program for symbol/text to speech

Since my speech is going downhill quickly, I'm always on the lookout for a portable device I can use when the day comes that no one can understand me.

This new program called Proloquo2go will be available in a few weeks for use on an iPod or iPhone. I'll be able to program it for the phrases I'll use most often, and wear it on a lanyard around my neck when out on my power chair. It won't be my voice but a voice just the same.

It will only be a short term answer as when I can no longer push buttons I will need a laptop or tablet mounted on the arm of my power chair. I will control it by head clicks or eye movements. You might find this discouraging/depressing but I look at it as a gift of modern technology. Imagine what it was like for ALS patients many years ago. I can't imagine not being able to communicate. The silence must have been incredibly frustrating. 

Adapt, adapt, adapt--it's the only way to stay in the game.

Roof top

View of restaurant and cafe on Rinascente top floor from the Milan Duomo

Reminds me of the song, "Up on the Roof"

The sun is comin' up!

Listen to "Sunrise" by Norah Jones

Have a wonderful weekend

Hand atrophy/muscle paralysis in ALS

Is ALS a disease of the muscles or nerves?

ALS is a disease of the motor nerves, specific nerve cells in the brain and spinal cord that control voluntary movement. Motor nerves attach to muscles and when the motor nerves gradually degenerate and die, the muscles no longer receive nerve impulses. As a result of the nerve death, the muscles atrophy and waste away. When an ALS patient first notices neurological symptoms, more than half of the motor neurons may already be dead. The body has a remarkable ability to compensate for nerve loss and new nerves grow at the same time other nerves are dying. Eventually, nerve death becomes so pervasive that muscle paralysis is the result.

Beware of identity theft

Creativity

More help for ALS patients

Some of you watched "House" last night and witnessed 'locked in syndrome' also common in late stage  ALS. The technology being developed is incredible. Here is a link to one device already on the market.

Priorities

Another birthday celebration

An update on the car in the photo below

" ... the car in the photo is the most desirable make, model and year there is for most hot rodders.
It's a 1932 Ford five window coupe... the first year Ford produced a car with a V-8 engine made with a one piece cast iron engine block.
Before Ford developed the casting process that allowed his factory to make V8 blocks in a one piece casting they were made in three separate pieces requiring a lot of expensive machining which made V8 and V12 engines very expensive to produce.
By eliminating a lot of the machining and the time involved it made the more powerful and desirable V8 equipped Ford cars cheaper to produce and thus available to a much larger market.
The 1932 Ford body was also restyled from it's 1931 and earlier Model "A" predecessor and featured small but significant refinements such as slightly slanted windshield posts, a grill in front of the previously open radiator, and generally more rounded body styling.
Although produced at the height of the depression it sold well and remains today as one of the most admired and sought after early models ever produced by Ford.
Some of us who have always favoured Ford products over others consider some of the 1932 Fords... such as the three and five window coupes... as well as the two dooor sedan and the two door "Victoria" model to be the best looking cars Ford made in that era."
My thanks to Pat Sands for sending this information.

Flashback--1940?

My Mom in her fashionable trousers.

Everyone says I look just like her so I'll accept that as a compliment.

The old garage behind her was my Grampa's workshop. He fixed our bikes there many years later. The hollyhocks and sweet peas in the background, bloomed all summer. I'm not sure about the year of the car--perhaps some blogger friends can help me out.

One of the most popular dance tunes of the time: Glenn Miller--"In the Mood" Click on song title to listen.

Simple pleasures

A good cup of coffee, a card in the mail, a visit from a friend, a flower on your desk--these are the simple pleasures to treasure.

Strangers can often make good company

"Wonderful Wonderful"--Johny Mathis

I meet so many strangers on my power chair--people I would not have spoken to when I could walk. 99% are caring, interesting individuals. We talk about the lack of handicap door openers, the weather and the latest trends in eateries. Small talk perhaps, but a connection that is somehow special. We are warm and open. We have no relationship baggage. It's a brief meeting of the minds and hearts woven into a wonderful conversation.

In This Life

Remembering those we've loved and lost.

"In This Life" by Israel

Foot pain with ALS

When a motor neurone dies completely, the muscle it serves stops working. Other muscles or ligaments can't offer enough support so the joints become painful. In my case, my arch was collapsing. I learned to stretch the ligaments and mobilize the joints to ease the discomfort. Pain medication, gel arch support, and massage provided some relief as well. The feeling is similar to osteoarthritis. You step out of bed and yelp!

Music to your ears

Tell Me the Duck Song

I can hold a fork and open my mouth when I really want to!!

I'm still partying but will need a nap today--and "Yes" that is cream on my nose. You can dress her up but you can't take her out!

"It's My Party" by Leslie Gore

I'm hanging in there

I love the early morning sun

George Harrison sings "Here Comes The Sun"

In my birthday suit

Bet the title scared you!!
1946-- bald and beautiful.

Happy Birthday to me on this sunshiny day!

I Can See Clearly Now This is a wonderful group with amazing diversity.

I'll be off on my power chair for lunch. You can never celebrate too much!!

Tomorrow is my birthday! Hooray!

With the first day of spring comes my 63rd birthday. Today friends came over to start celebrating and one of my gifts was this hat to wear on sunny days while on power chair excursions. Being almost an albino, a hat is a good thing. Memories of scorching sunburns as a child still linger.
As I continue to party in honor of making it another year, I want to share this song sent to me. Thanks to everyone for shining light on my journey.

Safe at last in a good suit

I figure this is the best bet for me. I won't ever have to worry about falling and hurting myself.  Now, I may never be able to get up but I can roll out the door to get help. 

Considering an accessible van

I've been tossing around the idea of purchasing a wheelchair accessible van. To help out, a dear friend sent me this idea. It's a lot cheaper than a Caravan or Vanguard, but the biffy is a wee bit small. Perhaps I can have it remodelled? 

Happy St. Patrick's Day

Hear a good ol' Irish song

click 

Augie Nieto on NBC's "Today" show March 18th

Augie and Lynne Nieto, co-chairs of MDA's ALS Division, will be featured Wednesday, March 18, on NBC's “Today” show. Among other things, the Nietos discuss the effects of ALS on their lives, Augie's Quest and their partnership with MDA to find a cure.

Augustine (Augie) Nieto, a prominent leader in the nation’s fitness industry for nearly three decades, received a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in March 2005. Augie, 50, is approaching his role as co-chairperson of MDA’s ALS division with the same ironclad will and determination that catapulted him to entrepreneurial heights in the fitness world.

Chicago River is dyed green every year for St. Patrick's Day

Saint Patrick's Day is celebrated worldwide by the those of Irish descent and increasingly by non-Irish people (usually in New Zealand and North America). Celebrations are generally themed around all things Irish and, by association, the colour green. Both Christians and non-Christians celebrate the secular version of the holiday by wearing green, eating Irish food and/or green foods, imbibing Irish drink (such as Irish stout, Irish Whiskey or Irish Cream) and attending parades.

The St. Patrick's Day parade was first held in Boston in 1761, organized by the Charitable Society. The first recorded parade was New York City's celebration which began on 18 March 1762 when Irish soldiers in the English military marched through the city with their music.] The New York parade is the largest, typically drawing two million spectators and 150,000 marchers. The predominantly French-speaking Canadian city of Montreal, in the province of Québec has the longest continually running Saint Patrick's day parade in North America, since 1824; The city's flag has the Irish emblem, the shamrock, in one of its corners. Ireland's cities all hold their own parades and festivals, including Dublin, Cork, Belfast, Derry, Galway, Kilkenny, Limerick, and Waterford. Parades also take place in other Irish towns and villages. The St. Patrick's Day parade in Dublin, Ireland is part of a five-day festival; over 500,000 people attended the 2006 parade.

If the world could only learn to share like this

"I'd Like to Teach The World To Sing"

Sneaky kitty

Never take your eyes off your lunch!

Life is about choices

Oh how I'd like to ride a bike again. Life is all about choices and it's only when you have your choices taken away that you feel loss. However, I've found that if you can find a way to replace the loss, you can carry on with less grief. When I lost the ability to walk or drive, I got a power chair. My world grew smaller but richer in detail. When I lose my voice, I'll learn to use a speech device. I know I won't like it but I'll learn to adapt and I'll be a better listener.
In this photo I was 6 yrs. young, my big sister Cheryle 9, and my brother Ken, 1. 1952.

Later we had a Bicycle Built for Two. Click to hear "Daisy, Daisy"

I'm back from dentist

Do you like my new look? It's amazing what a dentist can do these days.

New teeth

I'm getting my new permanent bridge today. Let's hope it looks better than these.

Odetta

Odetta sang right to near the end. Here she sings in New York in April 2008 from her wheelchair. She died December 2008. She was part of the folk revival and a human rights activist.

Yummy

Apple Crisp Pie

Ingredients:

Pastry:
* 1 cup all-purpose flour
* 1 Tbs. sugar
* 1/4 tsp. salt
* 6 Tbs. unsalted butter
* 2 Tbs. ice water

*


Filling:
* 4 Granny Smith apples
* 2 Tbs. sugar

*
Topping:
* 3/4 cup sugar
* 3/4 cup flour
* 1/2 tsp. cinnamon
* 1/4 tsp. salt
* 8 Tbs. unsalted butter, chilled

Directions:

Pastry:
In a bowl, combine flour, sugar and salt. Cut butter into small cubes and with a pastry blender or 2 knives, cut butter into flour until pea sized granules form. Add ice water and mix lightly until dough forms a ball. Wrap plastic and refrigerate for 2-3 hours. Roll out pastry and fit into 9" pie plate.

Filling:
peel, core and thinly slice apples; spread slices on paper towels and pat dry. Place in a bowl and toss with sugar. Fill pastry shell with apples, rounding up in center.

Topping:
Combing dry ingredients in a bowl. Cut butter into small cubes, add to dry ingredients and mix with finger tips until granular and crumbly. Sprinkle evenly over apples. Bake for 15 minutes in a preheated 425 oven, reduce heat to 350 and bake another 25 to 30 minutes until top is golden brown and apples are cooked and bubbly. Cover pastry around rim with aluminum foil, if it is browning too fast. Serve warm with whipped cream.

Serves 8.(but not at my place!)

Jimmy's Story

Jimmy's Story

Journey of 1,000 struggles began with a single misstep

11/02/03

By STEVE DOYLE
Times Staff Writer, steved@htimes.com
Huntsville Times

Up at 5:30 a.m. and out the door. Hardly a soul on the streets at that hour. He'd hoof from his home in Huntsville's Blossomwood neighborhood to Big Spring International Park and back - three miles.

One morning, Jimmy's right foot slapped the pavement out of rhythm.

That's weird, he thought, and kept going.

It hardly seemed worth mentioning to his wife, Bonnie.

Something's wrong

The end of your life is supposed to announce itself rudely: a suspicious lump, or a throbbing pain in your left arm that sends you scurrying to the doctor.

But this thing festering in Jimmy's foot was as subtle as a paper cut. He shrugged it off when Bonnie said he should go get the limp checked out.

The disease came out of hiding on a steamy Saturday night in July 2001.

On his way to the backyard grill with a plate of ba-con-wrapped fillet mignons, Jimmy's foot crumpled. The steaks went flying, landing with a splat on the garage floor. He tumbled into Bonnie's Lexus, denting the back fender.

He cracked three ribs and hyperextended an index finger.

At his family doctor's office two days later, Jimmy was surprised to find out he couldn't raise up on his toes or rock back on his heels.

Bonnie's heart raced when the doctor referred Jimmy, the healthiest 57-year-old she knew, to a neurologist.

Is he trying to tell us it might be a brain tumor? she wondered.

The next day, Jimmy had to lie stiffly while an MRI machine's powerful magnets scanned his body, creating a three-dimensional image of his brain and spinal cord. But that was pleasant compared to the electromyography test that measures electrical signals coming from the muscles. Dr. Tejanand Mulpur jabbed a long needle into Jimmy's elbows, knees, calves, thighs, biceps and back.

Good news, Mulpur said afterward. It's not a tumor.

For the first time since Jimmy's fall, Bonnie exhaled.

On his way out of the exam room, Mulpur casually pointed to a black-and-white picture on the wall. A baseball player in pinstripes.

"Bonnie, do you know who Lou Gehrig was?"

Unconditional love

Slow Paralysis

Just one toe,
then taking a foot it moves
up the body weakening muscles in its path
settling in a finger--just one.
Not done for the year the voice starts to diminish in its wake
and tremors are seen where calves atrophied last summer.
Now two toes--and two fingers--curled and useless
like upside-down coat hooks continually getting in the way.
A hand no longer able to hold a fork.
Then resting, as if teasing that maybe--just maybe--there will be a remission.
But not to be as throat muscles spasm and a swallow of water evokes a choke.
Wheelchair,
hospital bed,
feeding tube,
breathing device,
computer generated voice,
full time care.
The mind stays sharp. A blessing?
Perhaps.

K.R. March/09

Love

"I Believe" by the Bachelors