To Market To Market To Buy A Fat Pig Home Again Home Again Jiggety-Jig

I love going down to Granville Market. It's only a 10 min. drive in my power chair. The fruits, fish and flowers, and almost all things you need are there. Musicians, tourists and locals make it a "people watching" playground. Whether I go with a friend or Caregiver, I always take time to inhale the ocean breeze, watch the boats and of course have a muffin and coffee.

ALS is an expensive disease

$60,000.00 wheel chair van

$18,000.00 per mo. full time care by qualified care workers

$35,000.00 fully outfitted power chair

$3000.00 hospital bed

$6000.00 bath equipment and remodel

$2000.00 lift chair

The list goes on and on and on and on.

Thank heavens for ALS society, insurance and donations. Unfortunately the government doesn't help at all--they say, "Move to a Home." Well, I'm not ready, and I'm not going. I'll wait until I'm broke. The wait may not be long. LOL.

What's in your attic?

I just read a great Blog written by a neuro nurse who has ALS. One of her topics was, "What's in My Attic?" This is an excerpt:

"Hmm, what is in this box? Oh!! No, don't look! Here, give me the tape. This one is stuff that is not for anyone else to see. No, I don't have any deep, dark secrets! It's just stuff I don't want to have to explain. I don't have much privacy in my life now, so I am keeping my past to myself. I don't mean just physical privacy. It is an invasion of privacy to have to have someone else dress you, help you to the bathroom, and all that, but it isn't so much what people see as what they know. I can't hide a stash of chocolate, try smoking pot, spend money, buy a present, try a new hairdo, read a book, change my clothes, or put a tape in the VCR without somebody knowing. 99% of the time it is no big deal, but I would like to be able to read "Final Exit" without anyone knowing, re-watch the Beatles Anthology without my family wondering if I have crossed that thin line between fan and pathetic nutcase, and toss out a whole stack of misprinted pages from the computer without anyone knowing I screwed up! There, it is sealed shut. Just label it "Privacy."

Well, enough of this. Stashed away up in this attic is my identity, all my tomorrows, my control over my own home, my freedom to make choices and come and go as I please and when I please, my ideas of the marriage and kind of love I hoped to have, and my privacy. All lost to ALS. Someone in the ALS group once remarked that the ongoing nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out paralyzed. That is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS you no more than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only the tip of the iceberg. You lose so much more. The attic gets more and more crowded.

Thanks for listening,"

This Ol' House

I love this house on 7th Ave.

Click for song.

Yummy Panini

My niece and I munching down our

lunch at the Wicked Cafe.

We had a great day!

This is what I do in my wheel chair. Can you imagine the laughter?

Click here to hear song.

Rainbow Connection--Sarah McLachlan

http://www.youtube.com/watch?v=Nluv2yWP1JM

Courage

Hope

ALS Message Of Hope

ALS may rob you of your physical body, but it does not rob you of your soul. You live in a society that emphasizes patient autonomy and you will be able to maintain yours. While embarking on a difficult endeavour, know you are not going it alone. Families and friends can come closer, and you will discover new friends. Other people with ALS are available and willing to share in the ups and downs of the journey. There are many dimensions to managing ALS and many professionals available to help you with them. The resources currently available to those affected by ALS are without precedent. You continue to be a valued member of society who can contribute to your family and your friends through the human values in which you believe. You continue to play a role in educating your children and providing support to your family. Due to the intense interest in people with ALS, the options available to you exceed those that were available to previous generations and are expected to increase. While no one has chosen this path, most have traversed it with courage and with dignity. From: ALS and Beyond Carmel Armon, M.D., Loma Linda University, Loma Linda, CA

Another Story

Al Pettit was a Captain with the Mississauga Fire & Emergency Services for almost 33 years before retiring with the goal of traveling with his wife Lee. Shortly after Al retired, however, their plans were interrupted when Al was diagnosed with ALS in October 2003. Suddenly, Al had a new goal – live life with ALS.

“When I was diagnosed I already had an idea of what I had because of research I did on the internet,” says Al. Yet, when his doctor said, “Sorry but you have ALS,” he felt like someone pulled a black hood over his head. “You feel like you will never see daylight the same again.”

With the help and support of family and friends Al began to see that ALS is not the death sentence as he first feared. Al’s positive outlook and perspective on living with ALS has motivated him to get more involved with the ALS community and savour the many joys of life. Joys that include a successful marriage of over 36 years, two beautiful children and the births of his two granddaughters.

Al has promoted ALS awareness in his local community, organized a team in the Walk for ALS, and continues to moderate and provide emotional support through the ALS online forum.

If you ask Al how he lives with ALS, he will say:

“You begin to realize that you can be living with ALS or dying of it. I’ve decided to live with it. One day at a time.”

My hospital roommate in June

When in hospital, this puppy came to visit me every morning while his human Mother taught me how to dress independently. He was very patient and I was very slow. I learned how to put socks on with the help of a gripper wand and how to get a T-shirt on by putting the weak arm through first. Often I get stuck in my shirts as I don't have the strength to untangle them. It's quite a funny sight and I always start laughing--this makes the task even harder!

Thank You

I WANT TO THANK ALL OF YOU--

You keep my spirits up when days are grey.

Also thanks to my many friends and family who visit, send cards, notes and/or phone. I love you all.

You gotta love him

You've either got it or not. This guy has got it.

I'm sure he'll grow up to be a politician--he's got the look that would bring in votes.

Bronze Statues

There is a wonderful display of 6 bronze statues outside the Vancouver School Board Complex. I went to the small park while waiting for Chapters to open and saw them for the first time. They are all portrayals of happy children--and best of all for me, all can be accessed by wheel chair.

Twinkle Twinkle Little Star

Twinkle Twinkle Little Star by Izzy

Misty sunrise July 31

The mornings are the best--cool and beautiful.

This was 6AM today.

I celebrated a friend's birthday at the Cactus Club for lunch. Three of us caught up on news events in our lives--grand children, wheel chairs and gardens.

We were treated to a quiet table in the atrium. I miss their delicious Bandera salads but it's not worth risking a choking fit on the lettuce.

I love food so it's easy for me to substitute. Today it was a Cajun chicken club.

Heat Wave

It's too hot!!

The cooler is melting--and me!

Wise decisions

Some times we have to make wise decisions or we pay a big price.

My planters

Now that I have care workers, I can have a few flowers.

A friend bought the planters and plants. With a couple of helpers, they were carried in and put on my balcony.

I miss my old garden so these are a splash of enjoyment.

The flowers are loving the warm weather more than I am. Spring and Fall are my favorite seasons.

We learn from our friends

Fireworks

What a show last night--not the fireworks so much but the lightning. I sat and watched for an hour. It was spectacular, topped off with a rainbow to the east.

Up Up and Away

The weather is so beautiful--I feel like flying into the blue.
I remember my Dad flying over our house and tipping the wings of his plane to wave. I took flying lessons in my thirties and thought I might fly as well, but when they asked me to stall the airplane and start it again, I just about lost my cookies. That day was the last time I flew. My 747 days were not to be. LOL.
I now fly on my power chair at 3 mph.
Not quite the same, but great fun just the same.

Yesterday I went to the park with friends for a picnic. In the evening a friend cooked a prawn dinner and we watched "Doubt". A VERY GOOD DAY.

ALS check-up

I'm feeling a little tired after my check-up, so I thought I'd just relax in my favorite spot.

The physiotherapist gave me some exercises for my hemi hip replacement and my sore lower back--which you all know I love to do! LOL. I also learned some techniques to transfer.

The social worker at the clinic is helping to get me some assistance with care costs. Statistics say I have about 2 years but some live 6+ years with a vent and  without some assistance I could be broke long before I die. If you're waiting for an inheritance--save your energy--I'll probably leave debt instead. This is all tongue in cheek as I have black humor. It's a family trait.

The OT is helping me with research on environmental controls on my "soon to be ordered" power chair. I hope to have the chair wired for a computer plug in and then I can use the joy stick for a mouse. It will be a BIG help as I lose more movement and spend more time in the power chair.

The doctor wasn't as concerned about my choking as I was. We will wait for my respiratory results in late August to determine if there is any need to consider a feeding tube. If my breathing score drops below 60% the PEG would be on my medical agenda. It appears to be premature at this time. Yahoo! My left leg swelling(oedema), is not alarming to the doctor. My carers massage it daily and the circulation improves so we will continue with this plus elevation.  

All in all they are pleased with my hip healing and my average to slow ALS progression.

I got a free ride from ALS transport to and from the clinic. A very nice benefit. My friend Lyn met me there and took excellent notes. I have great friends.

Today I was out and about with my care worker. It was a beautiful day and we celebrated her birthday.

That's all for now. 

Laryngeal dysfunction in Amyotrophic Lateral Sclerosis

I'm having more and more trouble with my voice projection and swallowing. As the muscles weaken I lose voice function and tend to choke on such things as lettuce and cereal. Eventually I will have no speech that you can understand and I will have to take nourishment through a feeding tube. It isn't the end of the world but another hurdle to deal with.

It feels like I have a mouthful of cotton when talking and choking is scary as you can aspirate, get pneumonia and need to be vented.

Like the picture, accepting something different with a positive attitude is the trick to moving on with grace.

Do You Know

Do you know where you're going to?

Eagle sculptures

This eagle is on Granville near Chapters. There are many throughout the city brightening the streets for visitors and locals. I snapped this picture when out for lunch.

I still have pain in my hip-- the long hours in my wheelchair aggravates it some days. Other than continued voice weakness and further loss of co-ordination, I'm doing well. I have great care workers.

I'm trying to cut down their time spent here but my balance is so unpredictable. A live-in caregiver is the answer--financially--but I haven't adjusted to the idea as yet.

Wouldn't it be nice

"Wouldn't It Be Nice" by the Beach Boys.

A golden oldie that fits the picture.

The days of youth

I came across a photo of Cheryle and me taken in front of the rose trellis I mentioned in a previous post.

Mom loved to dress us up. It was a struggle to get me out of my blue overalls but somehow she succeeded. 

We had so much fun playing in our yard. Wagons, dolls, scooters, bikes, puppies and kittens all played a part in our amusement. Life was so carefree. It's not quite the same now--but still beautiful.

Lou Gehrig's Letters

Click here to hear some of Lou Gehrig's letters.

Wild Roses

These roses are surrounding one side of Granville Loop Park.

I have fond memories of the older varieties since my Mom grew Betty Prior roses on a trellis near our back door.

It's always interesting what you remember from childhood and what you can't recall at all.

It's another beautiful day and I will be joining friends for a coffee and sandwich at Starbucks.

Jack Orchard dies at 41

Jack Orchard, Lou Gehrig's disease, ALS

FILE: TUESDAY, DECEMBER 11, 2007 -- Jack Orchard and his girlfriend, Kristen Williamson, share a moment as they search for music on the computer on Tuesday at their home in Richmond Heights. Orchard wrote his memoir about his life with ALS. Even though he can't move his body, he uses a device that tracks his eye movement to navigate the computers. He also started a charity, Extra Hands for ALS, that help match student volunteers to assists people with the disability. (Huy R. Mach/P-D)

By Harry Jackson Jr.

ST. LOUIS POST-DISPATCH

07/06/2009

Jack Lampl Orchard died Saturday (July 4, 2009) after a long battle with ALS, also known as Lou Gehrig's disease. He was 41.

"He fought ALS; he never let it beat him," said Mark Jaffe, a lifelong friend. "He was always a fighter. On our high school football team, he was the captain in our senior year, even though he wasn't the biggest or the strongest. That's just how he was. Always a fighter."

Mr. Orchard, a successful international entrepreneur, is best remembered for forming two foundations to fight amyotrophic lateral sclerosis: the Jack Orchard ALS Foundation, which according to friends and family raised more than $1 million for ALS research; and the Extra Hands for ALS Foundation, which recruits and trains young people across the country to help people living with ALS.

With sadness we lose an author and ALS fighter

Losing My Voice! Living with Motor Neurone Disease (ALS)

...is an inspiring and emotionally moving story of courage and determination.

One year after moving from Auckland, New Zealand to Sydney, Australia to start a new career Barbara Williams is diagnosed with motor neurone disease MND, an incurable, degenerative, terminal condition also known as amyotrophic lateral sclerosis ALS. Once diagnosed with motor neurone disease, there is currently no hope of a cure. The best one can hope for is to slow the progression of the disease.

Just a little different

It's refreshing to see someone approach life from a different angle!

Click above.

My new shower

Thanks to my brother, Ken, I now have a new shower. My caregivers roll me in on my commode. I'm squeaky clean once again!!

Boston Red Sox Raising funds for ALS

The Speech

Warm out there

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.