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The First St. Thomas walk for ALS

The first walk for ALS was held on Saturday September 27, 2008 in Pinafore Park with approximately 250 people participating. The walk was organized by Steve Barber and friends and family and raised over $ 37,450.00 for research into cause and cure for ALS. The two St. Thomas ALS patients, Steve Barber and Chris Van Doodewaard, participated in the walk.
Dr. Michael Strong of UH spoke and informed us of some exciting new developments. The neurological team at UH in London will be expanded with leading experts from Japan, Chile and Spain. They are pursuing a very first breakthrough in developing treatment for this disease.

A warm thank you to all who participated by giving and / or walking!

When the stock market crashes or your health fails.....

Water in a dry place. Isaiah 32:2

Are your outward circumstances dry? Are you rich?
Wealthy society is generally as dry as the granite hills. Gold and gospel seldom agree.
Are you poor? Poverty is a dry place to those who are not rich in faith. Are you engaged in business? How often do its problems parch your soul? To rise up early and toil late amid losses and crosses is to dwell in a dry place
Oh to feel the love of Christ flowing! This is to have “rivers of water”. True religion is to have Christ when you are losing money, when checks bounce, and when banks fail. It is sweet to be able to rejoice in Christ even when you are out of work, to have Christ even when your wife is sick, to have Christ even when your precious child has to be buried, to have Christ when your head is aching, to have Christ when your poor body is half starved.
You will never know the sweetness of Christ until you know the bitterness of trials. You cannot know His fullness until you see your emptiness. I pray that it may be your experience to always feel that you are going down and Christ is going up, to become poorer and poorer apart from Him, while knowing more and more of the priceless riches which are yours in Christ Jesus. Christ will be dearer and dearer as you have less and less esteem of yourself.
Christ is “rivers of water in a dry place” (Is. 32:2). “He who believes in Me shall never thirst” (John 6:35).

C.H. Spurgeon

Wedding Scott and Jenifer

The Lord has been gracious to us, and allowed us to see all our children joined in marriage to their lifelong partners. Saturday, September 20th, 2008, was the festive day of Scott and Jen's wedding. It was a bright and sunny day. The father of the groom, Rev. John Koopman, officiated and preached the Word. Beautiful music, fitting the occasion, was made on the church's organ by Brian Luth, and on the piano by Lauralee Van Doodewaard. We are thankful for the Lord's leading in the lives of this young couple. It is our prayer that they may live to the glory of our Lord and Saviour.

To see their pictures click here

Quote from J.C. Ryle

By affliction He teaches us many precious lessons, which, without it, we should never learn. By affliction He shows us our emptiness and weakness, draws us to the throne of grace, purifies our affections, weans us from the world, and makes us long for heaven. In the resurrection morning we shall all say "it is good for me that I was afflicted". We shall thank God for every storm.

Our 40th wedding anniversary (to see all pictures click here)

Forty years ago, just us two..............











We were blessed to have all our children and grand children attend!

South Carolina / Georgia 2008

We are back again from a very enjoyable trip to South Carolina to visit Peter and Lauralee and family in Greenville. On our way there we stopped in to see some dear Christian friends, Rob and Kathie, in Atlanta, Georgia. We have been corresponding with them for some years since Rob also has ALS (since 4 years). We had a delightful visit with them and could encourage each other in the Lord, who is good and sovereign in all He does. It was like meeting old friends, even though we had never met before. We praise the Lord for allowing us this opportunity for fellowship!
We traveled on and were, that same day, at Peter and Lauralee's place. The Lord blessed us with safety and the ability to travel so that we could witness Peter's ordination as pastor of the OPC of Greenville. The next Lordsday were were blessed being able to witness Peter baptizing his youngest daughter Katie.














We stayed at Table Rock State Park in SC., where we had rented a (handicapped accessible) cabin.














This week (on Saturday June 21st) we hope to celebrate our 40th wedding anniversary with all our children, grandchildren and Canadian relatives.

May 24, 2008 update

I am blessed to be able to use my leg again and am again able to drive. In the past month we have had a busy time. All our children have visited, as well as Mary's brother Leen and his wife Ineke from Holland. We could celebrate our birthdays in April, and also welcome a new grandchild on April 10, 2008, Katie, a daughter for Peter and Lauralee.

Peter will be ordained and installed as pastor of the OPC in Greenville, SC on DV. June 6, 2008. The Lord willing, we will drive down to Greenville to attend.

Update April 8, 2008 , 2 months no walking

As you all may know ALS causes increasing weakness of all muscles, and an almost inevitable result will be that you sooner or later will fall. On February 27th I fell while transferring to my wheelchair. Up to then it had always gone well but this time my legs gave out. My right foot sort of twisted under me and bore the brunt of my weight I guess. It started to swell up. Mary insisted that we go to emergency at the hospital in case it was broken. To make a long story short, I indeed broke a bone, the fibula, just above the ankle. The doctor gave me an aircast, which is less heavy and uncomfortable than a plaster cast. It has to stay on for 9 weeks. For this period I am not supposed to put any weight on that leg. If I do the bone may shatter and I would be in serious trouble. We are allowed to take the cast off for dressing and washing, but preferably not for the first five days. Regularly we have to go back to the hospital for x-rays and to see a doctor. Needless to say, this makes things a lot more difficult. I cannot stand on one leg to transfer from chair to bed, etc. Standing on two legs was already becoming difficult, hence the fall.

We have received help from the occupational therapist. She has arranged to have a "Cricket lift" (a smaller version of a Hoyer lift) delivered. We will be getting other help to assist with transfers etc.

We are thankful to the Lord for the comfort and peace he provides every day. We trust Him for all our needs. The Lord is good in all He does.

Progress report 6 February 2008

Here is an update to let you all know how ALS is affecting me. ALS is a disease that will continue muscular degeneration. Also with me the effects are becoming more noticeable. Some changes since my last update are:

BREATHING:
I am using my bipap (Respironics Synchrony life support ventilator) full time now. I can go very short periods without breathing assistance, but barely long enough to have lunch. Increased use of the bipap has also increased pressure on my face, and it became necessary to purchase another face mask of a different design. I had been using a full face mask (something like the ones you see fighter pilots use) for sleeping, but it was wearing down the bridge of my nose and creating red wear marks on both of my cheeks.

My new nighttime mask is a new invention (produced by RESMED: a Mirage Liberty full face mask) and has a pillow admitting air under each nostril and a small cover for my mouth also admitting air. It is lightweight and does not rest on nose or cheeks, giving those a break so that they can heal. This mask leaves the upper face clear for the use of glasses for reading, which the other full face mask did not do.














For day time use I have a small mask with a prong bringing air to each nostril, allowing for speech, eating, drinking (using a straw) and reading.

I have also increased the pressure on the bipap machine to 6 E and 16 I (up from 5 and 14). The higher pressure inflates my lungs more, but does cause some nighttime problems. When sleeping, my face relaxes, and the high pressure lifts the mask off my face, causing noise and a loss of air.

MOBILITY:
My walker is getting less use, since my legs are having difficulty in supporting me, and this is of course aggravated by a lack of air when pushing my walker. So I have started making more use of my Jazzy 1113 power wheelchair, so that at least I would not need to walk, decreasing the need for additional air. Also, even when using my power chair, the lack of air is becoming more evident, and it was obvious that use of the bipap was needed on the power chair if I was to continue to use it.

I had asked the company that maintains and sells these chairs locally, if it was possible to mount the bipap machine on the chair, and run it on the chair's battery, but they said it could not be done. Research on the internet showed that it had been done. See:

http://mikebougher.com/12vdc_power_for_bipap_or_ventil.htm

The Jazzy 1113 power chair runs on 24 volts (two 12 volt batteries) and I asked a technical brother in my church advice if we could mount the 12 volt bipap on one of these. We decided to try it, and he built a very nice holder on the back of the chair to rest the bipap on, with a cigarette lighter plug wired to one of the two batteries, just under the bipap machine holder. (Thank You Brad!)

This worked fine, until we found out that when recharging the chair, the charging stopped when the least used battery was full. It is obvious that we will exhaust one battery in due time, and that the chair will not recharge because the other battery is still full.

As interim solution we have mounted a separate 12 volt battery for the bipap machine on the new holder on the back of the power chair, and put the bipap machine in the shopping net, and presto!


We have full portability: both mobility and a constant air supply.

Going shopping, of course one has to be impervious to the glances of those who think I have just arrived from outer space, but that is a small price to pay.

The next step to perfect this setup is to mount a 24 to 12 volt converter between both batteries and the new plug for the bipap. This will drain both batteries equally and resolve recharging issues.

This will remove the temporary extra battery from the bipap holder, and the bipap machine can then be placed in its holder, and the shopping net will be empty, cleaning up the present cluttered appearance.

FINE MOTOR SKILLS
The use of my hands is regressing. I can no longer write. Also the use of the computer keyboard gets very tiring after a while, and a lot of surplus letters start appearing on the screen.

As I am getting physically weaker, the Lord strengthens me with His comfort and presence. He gives me peace and contentment. I rejoice in His blessings every day. I depend on Him for every need, and He has greatly blessed me. His greatest blessing is the work of His Son, who has died for my sins.

Not what my hands have done
Can save my guilty soul;
Not what my toiling flesh has borne
Can make my spirit whole
Not what I feel or do
Can give me peace with God
Not all my prayers and sighs and tears
Can bear my awful load

Thy grace alone, O God
To me can pardon speak;
Thy power alone, O Son of God,
Can this sore bondage break.
No other work save Thine,
No other blood will do;
No strength save that which is divine
Can bear me safely through.

Horatius Bonar