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Feeding tube on low FVC

I had a PEG installed Jul 17, 2007. Several months before my FVC was 30% and I was having extreme trouble swallowing and was getting nervous about my condition. Since I was not getting any support locally we went to a major centre and talked to a respiratory surgeon, he tested me and found my FVC had improved and was 40% (according to his test), he pushed for a PEG ASAP before breathing got worse. I agreed to have it done.

Interview we did

 . We were interviewed in January (2009) and the article just came out in the Vancouver Sun and the Province newspapers Feb 17th. It was done by the ALSA in BC as part of an ALS awareness campaign. Here is the content: “I try to be a positive voice”

Setup in our bedroom

I took a few pictures of our setup in our bedroom. I will explain what is happening in each picture, hope it will help clear up some misconceptions about caring for someone with a vent. In addition to what I have tried to explain in each picture we have another vent mounted on my powerchair and 1 of everything in a packsack we take with us when we go out.

Home Care for Trach - Info?

Your Safety and Comfort The following is a review of some of the supplies and procedures required to help ensure your safety and comfort. Ventilators BACK-UP SUPPLIES Always have the following available in case of an emergency: • Bacterial filters (front) • Bagging unit • Circuits, including exhalation manifold • Flex hoses • Gloves • Intake filters (back) • Spare exhalation valve (balloon) • Spare tracheostomy tube • Suction catheters • Tracheostomy adapters • Water traps Circuit changes and cleaning Replace your entire circuit (except the exhalation

Using O2 on ALS patients

You might find the following information helpful: Patients with neuromuscular diseases who are developing progressive respiratory failure due to respiratory muscle weakness will die unless mechanical ventilation is used. The rate of progression is often hard to predict. Some patients seem suddenly to experience life-threatening hypercapnic respiratory failure. They may not have been aware of gradually increasing symptoms and signs, particularly since they are often not physically active and are often not being regularly monitored with simple pulmonary function tests.

Getting used to a BiPAP

For anyone who is struggling to get used to using a BiPAP. Persevere.....it does get better!

Bathroom & Shower

Here are some pictures of what we did for our bathroom. The bathroom inside dimensions are 15 feet by 7 feet. The shower is 7’ by 7’. It works perfectly. We will be putting in a ceiling lift and track that will take me right from the bed to the toilet and into the shower. You can see the toilet has been lifted with a toilevator and has a ToTo Washlet. [ATTACH]10[/ATTACH] [ATTACH]11[/ATTACH]

Weird Idea (Of Having Fun)

This is one of the 20 songs that I wrote last year, but didn't make it on to my CD Weird Idea (Of Having Fun) Playin' on the phone Get another girl to loan Now there's emptiness the call is done Sure is a weird idea of having fun Scrubbing down the floor Like a thousand times before Always smokin' jib until yer spun Sure is a weird idea of having fun You have ignored friendly advice They say you try it once you'll try it twice You have been misled by yer stubborn head As thick as bricks Ev'ry day a tragic way To get your kicks

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