Fear

I have moments/days when I feel the fear and I have days(the majority) when I don't even think about it. The most difficult times are when I have to adapt to new props, techniques, losses. Adapting to the walker and then the power chair was easy as they both gave me freedom/independence. Adapting to help with shower, dinner, drinking, etc. was more difficult--it seemed such loss of independence and made me feel less 'normal'. Losing all strength in my hands will be a big one. Legs I don't miss much, but arms and hands are my lifeline for 'going it alone'. Feeding tube, BiPap, I shall learn when the time comes(soon). Trache will take some mind over matter, but I know I can do it.

At my check-up 2 wks. ago, FVC(breathing input and output) was 57%--normal for my age is around 80%. I go again in October and if it drops I'll be scheduled for a feeding tube. Although I can still eat most foods they don't like to do the operation below 50%. I must have it for the future. How else can I get my Starbucks' buzz??

In general I'm feeling fine. My friends, Care Workers, and Family keep me in good spirits.

Baby eagles at Vanier Park

I went in search of an eagle's nest I had heard about. The sun was shining at me so the photos are not the best but memorable for me. Along the way I met a Heron(chatted awhile LOL) and saw the water lilies in full bloom in the lagoon. My camera is getting heavier(not me getting weaker!) so I find it difficult to take photos up high. Perhaps when I get a camera mount it will extend my time line for this hobby. Let's hope.

Do you remember the view-master? It was magic.

I'm hanging in there--with a smile

Oh shit! I got hit by a seagull.

Transitions--difficult to accept some times.

Independence is precious. My arms have become weaker and no longer support my weight well for transfers. I have requested a lift for night use when I'm in my weakest state--both physically and mentally. I get feeling down when these changes in my body continually rob me of any independence. However I soon adjust and get back to enjoying life.

The day will come when I will find it difficult to accept major changes--that's when family, friends and Care Aides will play a big role in helping me stay jovial. So far they've stepped up to the plate every time so I'm confident it will continue.

"Friendship makes prosperity more brilliant, and lightens adversity by dividing and sharing it."
-- Cicero (44 B.C.)

Maxine

Karaoke

I had lunch and Karaoke to celebrate one year with my Care Aides.

I sang "You Needed Me" and it came out sounding like a drunk, tone deaf, John Wayne. Ann Murray watch out!

I'm ready for "Canadas Got Talent."

It was a fun day.

I finally did it! Helicopter Ride to Remember.

Thanks to my friend Carol, I got to ride on a helicopter for the first time in my life.

I went with Grace(my Care Worker), Carol, Bobbi and Barb.

Are you wondering how many strong young men it took to carry me into the helicopter? 5 to be exact!! One young man had his head pressed against my chest and as they were about to lift me he said,"By the way--my name is Kevin." Great bunch of guys.

Getting out was a bigger challenge, but we made it and the last picture of me was taken at the Flying Beaver Pub. Perfect way to end the day.

We took a hundred pictures, but I had pity on you all and narrowed the collection down to 17.

Young Celine

http://www.youtube.com/watch?v=ECn5edxbIcA

Some children are born to sing. Thank You For The Music.

Some times it's all we need

Tess is a Canadian Citizen!

I attended Tess's(on left) oath taking for Canadian citizenship. It was a very special day. Following the ceremony we celebrated at Joey's.

The Judge was kind and offered to stand for pictures.

90 people took their oath--from 6 to 80 yrs. Countries were many. If you've never been to a ceremony--let me tell you--it makes you proud to be Canadian. I raised my hand and took the oath along with all the excited new Canadians.

The West End--Vancouver

History

Like all of Vancouver, the West End was originally a forested wilderness. The area was purchased in 1862 by John Morton, Samuel Brighouse, and William Hailstone, three men known as the "Three Greenhorn Englishmen," or just the "Three Greenhorns," owing to the belief that the naive men paid too much for the remote land. The men had plans to establish a brickworks on the shore of Coal Harbour, and their land claim was originally staked with the hopeful intent of mining for porcelain clays, but the grade of clay was not fine enough for that use. When those plans failed (a lack of transportation being a key factor) they sold a good portion of the area, by then known as the Brickmaker's Claim, to Victoria investors who in turn tried to promote its development as New Liverpool. The only thing that happened with that scheme was a subdivision plan registered with the Land Titles office in New Westminster. Another name used for the property was the Brighouse Estate (Brighouse as a name came to refer to a particular part of Richmond, where "Greenhorn" J. Morton also owned property). One of the partners, observant that brick was a valuable building commodity despite the abundance of timber in the region, moved the brick-clay operations to Sumas Mountain, establishing the community of Clayburn, now a neighbourhood of Abbotsford.

A couple of typical older-era houses on Comox Street

Later, with the arrival of the Canadian Pacific Railway, with its terminus at nearby Coal Harbour, the West End became Vancouver's first upscale neighbourhood, home to the richest railroad families. Many of these families lived along Georgia Street, known at that time as "Blue Blood Alley" for all the posh mansions built there.^[2] Later mansions (including the Davie mansion) were built in then remoter areas of the West End as the financial district's land values displaced the high-toned residences. This role was ultimately dropped with the increasing vogue for the upscale Shaughnessy neighbourhood, and as middle-class housing of various kinds began to fill out the West End. As the city grew, the West End became a transitory place for new arrivals from elsewhere in Canada, the United Kingdom, and later for immigrants from other countries, establishing a tradition of diversity. Following World War II, a significant German commercial community emerged along Robson Street, giving birth to the nickname Robsonstrasse, a name still occasionally used in marketing despite the loss of its original meaning.

Do you recognize me?

I can't help it--It's just the way I was born.

Turtles rafting in Steveston

ALS Walk

We had a good turn out for ALS walk in Steveston today.

I raised about $2300 and thanks to all responsible.

It was a beautiful day.

Lasagna

ALS Clinic check-up

Once again I had my 4 mos. check-up, and once again the doctor, nurse, OT, speech therapist and social worker were extremely helpful.

For the first time, I didn't have a list of questions, complaints or concerns. This may be in part the result of my poor speech. However, my friend Lyn who accompanied me, said I talked non-stop. Some things never change! LOL.

My speech has gone down hill incredibly over the last 2 mos. and everyone is aware. Therefore, I'm making an appointment with the speech therapist to learn more about the speech program(Proloquo2Go) I downloaded on my iPhone. By Christmas, I doubt if anyone will be able to understand me. I will communicate mainly by email and a speech device. Please be patient with me as my mind will remain sharp(brilliant as usual. Ha!).

My strength in my hands, arms and shoulders has decreased. It's difficult to raise my arms beyond the level of my shoulders. Therefore, it is tedious to hold a fork and eat, brush my teeth, raise a coffee cup to my lips or reach the slot for my bank card at ATM. The height elevator on my power chair helps with many of these things, and my wonderful care aides help with the others. I'm coping well, but have my frustrating moments.

Because my FVC(forced vital capacity for breathing) has dropped recently, the doctor has advised considering a feeding tube some time in next 6 mos. This is fine with me(probably a one day stay in hospital or done as out-patient). I may not use it for some time but need to have it done while my breathing is above 50%. I'm a poor water drinker so this will help as my carers can pour water down it--hopefully not drown me!

My OT from the clinic is arranging someone from Assistive Technology to construct a camera mount for my new power chair. This is so exciting for me. Most of you are aware of my passion for photography. It won't happen until July but it will make taking photos less fatiguing and gives me a chance to continue bombarding you with "about town" snapshots.

I think that's about it for now. It was a good visit and although ALS is continually robbing me of independence, I'm keeping ahead with props, knowledge and following the old advice, "keep living today to the fullest rather than fearing tomorrow."

We need your help

PLEASE WALK WITH ME or if you can, make a donation by cheque to ALS Society of Canada and mail it to me. Thank you!

Event Date: June 5, 2010

Start Location: Garry Point Park, Steveston

City, Province: Richmond, BC

Registration Time: 9:00 AM

Event Kick Off: 10:00 AM

You can donate at my Walk for ALS Blog. Here is the link

http://www.als.ca/events/mysite.aspx?fid=4618

Please watch this video. We need a cure.

http://www.youtube.com/watch?v=yZeWWJHTV1g&feature=related

A walk(ride) to Vanier Park

Travelling west along the ocean-side I visited the Kid's Festival site. I had hoped to photograph some kites flying but the wind was weak so no one ventured out. Oh well--next time.

However, the sun shone and once again I got to marvel at our city's beauty. On days like this I forget about ALS and simply enjoy the moment.

The photos were taken by Tess(care aide) and me. We ended our outing with Fish 'n Chips at the Oyster Bar.

Once again--a very good day.