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.

ALS takes another beautiful person

It's with great sadness that I report the passing of my Pen Pal in California.

Marilyn, a nurse in management at Fullerton Medical, a Mother of 4, and a great support for me when I first joined PLM for ALS, held on to her strong faith and died accepting her final journey.

Thank you Marilyn. You will never be forgotten.

“In prosperity, our friends know us; in adversity, we know our friends”

John Churton Collins

Tuesday

My mind works like lightning, one brilliant flash and it is gone.

New Wheels-- Invacare TDX SP

I've been out and about for the last few days enjoying my new power chair--and the warm weather.

The first photo is at Vanier Park where they are getting ready for the Children's Festival.

The second is on 7th Ave. on my way to Charleson Park.

My new chair is an Invacare TDX SP.

It has power everything--legs, recline, tilt and height. It also turns the T.V. off and on and the joy stick for power converts to a mouse for computer and there are buttons for left and right click. I have a chest belt for when I become "wobblier" and leg pads to rest my legs when I nap in the chair tilted and reclined.

I'm quite pleased with it but there's a few tweaks yet to be done.

At a later date, for the benefit of my ALS PALS and others I will be writing a comparison of this chair and the Permobil 300( the chair I had while waiting for this one).

It seems that rain is in the forecast so I'll have more time for posting.

It's morning and I don't have anything else to say.

Baby geese at Granville Island

Why do geese mate for life?

For every 100 marriages in Iceland, there are 31 divorces; in Belgium, the divorce rate is almost 60 percent; and for every two marriages in the United States, another one falls apart [source: CDC, NationMaster.com]. Perhaps humans could learn a thing or two from the birds on this one: More than 90 percent of all birds are monogamous, meaning they maintain an essentially exclusive relationship, or pair bond, with just one member of the opposite sex [source: Gill].

Geese are especially fastidious when it comes to their loyalty. They're well known for the long-term pair bonds they form. So what's their secret? What makes these water birds so successful in their relationships, and why would geese mate for life?

Something to ponder.

FRUSTRATION!!!

I asked my brother to please straighten the carpet under my computer desk. 24 hrs. later neither of us could figure out why the internet somehow disconnected during the carpet adjustment. Telus said we needed a new ADSL Modem. However, both of us demonstrated our stubborn streak and refused to wait 5 days for Telus to ship a new D-Link. After a zillion tries we finally got it up and running. There seems to be a problem with one of the connectors. So-o-o after coming close to making it disappear I'm not touching anything and happy to be back online.