Newsletter Article

This post includes an article that Jim wrote for a disability newsletter put out by the CRC/Reformed churches called Breaking Barriers. It was published last month and I thought you might like to read what he wrote. 

ALS Brings Traumatic Change

by Jim Curry

In rural Ontario my wife Annette and I raised three beautiful children, who as adults have provided us with seven grandchildren.

In spring 2014, after 21 years of working for the local municipal council, my voice was failing me. At that time I was diagnosed with myasthenia gravis, a speech impediment, and in December2014 I went to London Health Science Hospital in London ON for series of tests. The diagnosis was changed to Bulbar ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s Disease), a dramatic and traumatic turnaround. I was given 2 to 5 years to live. 

I am getting weaker and have lost a lot of weight. Since October I receive nourishment by feeding liquid through a feeding tube. It takes a lot to maintain weight. I cannot talk or swallow. I have a speaking machine, a cough assist, and suction equipment.

There was a five-kilometer walk last summer to raise money for ALS. I completed it, but this year I will have to use a wheelchair to complete it because my strength has diminished.

On Christmas night I had pneumonia and was in the hospital for 8 days while receiving strong antibiotics. I was very weak getting out of the hospital and it took many days to gain my strength back. My arms are much weaker and balance is a challenge. Falling is a source of pain. 

I continue to serve as chairman of Drayton Reformed Church’s Disability Committee. Our groupof four has been active for several years in making our church comfortable and safe for all. We are in compliance with the Accessibility for Ontarians with Disabilities Act (AODA) and following its mandate.

We have lots of support from our family, my life group known as The 5 Guys , our church, and our community. We are blessed.

I do not know what the future holds but I will trust in God, who knows the future, to call me home.

A further update - we are battling his feeding regimen.  A new formula is being tried and we are not sure how effective it is.  It seems to have spiked his blood sugars and led to some unpleasant side effects.  So we are monitoring his blood sugar levels and trying to get them back to normal.  It's too bad this disease doesn't come with a text book that tells you what to do - everyone's condition is so different.  Also 10 days ago on Easter weekend he experienced a fall in the garage and ended up needed staples in his head.  Everything went well with that, for which we are extremely thankful.  What once would have been a calamity is now just a blip in the continuum of life!

We continue to feel blessed with your prayer support, your comments and your visits.  Thank you. 

How's Jim doing?

How's Jim doing?  That is the question I get asked almost daily.  It is also a question that is difficult to answer.  From day to day there is not much changing and most days things continue routinely.   His   breathing is good - he seems to have got rid of all the coughing following his heavy drug dose while in the hospital for pneumonia in December.  His digestion is still problematic with little weight gain and very loose stools.
Routine days seem to work best but he likes to be interrupted with visits and short outings.  He continues to spend constructive time at the computer and is being challenged with filling out tax forms right now.  There are so many more things to include when you add medical and disability benefits.
Mentally, there are ups and downs. Some days are restful and other days leave him longing for his final home. Most of the time I am at peace with the situation and enjoy keeping myself busy.  Other days I feel less productive and wonder what the future will bring. It's in these situations that we learn to rely on our Heavenly Father and focus on Jesus.  That's easy for the head to say and harder for the heart to do.
We have borrowed a wheelchair fitted for him and look forward to getting out when the weather is better.  We are actively looking for a wheelchair accessible motor home with the thought of making traveling long distances a bit easier.  That way we could still get to Wisconsin for visiting. If anyone can point us in the right direction, we are open to advice.  Most camper doors are 24 inches and the wheelchair needs at least 28. It is hard for Jim to get up and down the stairs.
So, spring is here - at least by the calendar.  We are thankful for the bright skies and the promise of warmer weather.  We praise God for the beauty of His creation and look for His direction in all the other little things too.  Easter is around the corner and we live with the knowledge that Jesus paid the price for it all and prepares a home for our eternity.  What a Hope!  What a future!

Different hospital

Merry Christmas to everyone.  We enjoyed good times with our family and Trish and Jay and kids stayed with us for almost a week.  However, in the busyness of that, Jim caught a cold which went right to his lungs.  On Christmas night he needed more air than he was getting so we went to the local hospital in Palmerston.  He is still there, getting antibiotics intravenously and feasting on oxygen.  He is making some improvement but won't be released until he can be successfully weaned from the oxygen.  Hopefully in a day or so.  He finds it difficult to get good sleep because he struggles with coughing when he's lying down, even though his head is well elevated.
I have a new appreciation for the nurses who work during holiday times without the extra staff support.  They remain cheerful and patient.  There are a few other patients we know and it is good to see familiar faces in the halls.
I suspect this will not be the last time he will need to be admitted and once again we have to rely on God's strength to see us through.  As I heard in church this morning, our God is great and we must have confidence to depend on Him.  We must relinquish the right to fix it ourselves and just rest in Him.  That is my prayer for the days ahead.

December post

It seems a while ago that I posted so I will bring you up to date with what has been happening in this journey.
We are just back from two days in London.  The first day was the meeting with all the different departments at the hospital - routine but very helpful.  The second day was part of the research study Jim is part of.  Not so interesting for us, but hopefully helpful for future studies.
We are tweaking the feeding process in order to make it more comfortable for Jim.  He has been experiencing nausea with his feeds and his digestive system doesn't always like the food.  So we have a bunch of suggestions to try: smaller feeds more often, replace gravity bag more frequently, try a digestive aid, be more consistent with adding fibre or try night-time feeding.  One of these or a combination of them will probably help.  He has not been gaining weight since the tube was added but has not lost any either.
Another thing he will be trying is ankle-foot splints to give support to his weak ankles and hopefully prevent a fall.  I was hoping we could come back without more stuff but this looks like a good addition too.  Jim often recognizes how valuable the other equipment is for his well-being.  He would be lost without his speech machine or his cough assist machine. How fortunate that we have so many resources available to us (and funding to cover it.)
Life has lots of fun things too.  We returned from a Caribbean cruise on Saturday.  It was great to get into the warmth and sunshine for a week.  Travelling with my sister and husband was a godsend.  Jim enjoyed the cruise and the activities but was unable to participate in the feasting part of the cruise.  He stayed in the room for his feedings while we partook of way too much food.  However, we rented a wheelchair for him on the boat, and took him on shore excursions and throughout the boat.  Having a disability when travelling is not all bad - you tend to get to the front of the line, along with your travelling companions. A little perk!
Being south this time of the year makes it hard to focus on Christmas.  Perhaps it will help us think about the real meaning of Christmas a bit more. Jesus came to a real and hurting world, offering peace and hope for the future.  What better gift is there?  We pray that all our friends and acquaintances will experience that in their lives too. Thank you for your support.

Hospital experience

October 7, 2015
Jim has the feeding tube installed yesterday and everything seems to be working well. The surgery was short and he was conscious through the whole thing.  He experienced some pain in the stomach area but that has lessened quite a bit.  He started with some feeding this afternoon and we should be done here tomorrow.  What a bunch of great nurses!  They are so helpful and very good at explaining things.  Lots of professionals stopping in to check up on him for what is a rather routine operation.  His tube will allow for good nutrition but still let him enjoy whatever food he wants to be challenged with...and yes, he can still enjoy a beer if he wants to!

Seeing other patients (room mate 1 and 2) reminds us of how fortunate we are to have a great circle of support.  Both of his roommates were on their own and the one that is there now stated that he had no one to share his joys or his disappointments with.  How tragic!  His family does not seem to support him very well - he travelled from Thunder Bay by himself and is not sure how he will do going back after his surgery.  We are blessed with many emails and comments and even some terrific visitors!  Prayers have surrounded us for many months now.  How to share that with someone who is all alone is difficult.

On another note, we had a fantastic trip to Newfoundland and enjoyed the time away and the time with friends.  What a beautiful country we live in.  If you've never been, add this province to your bucket list - there are amazing sights around many corners, especially along the coast.  Moose are reported to be plentiful but we did not see any (except a dead one on the side of the road).  Moose hunting season was in full swing so they were in hiding!

Life should settle down for awhile now.  No big events being planned (yet).  Who knows what tomorrow brings?  But we know that God does and He has plans for us and we pray that we will be open to them too.

September - retired!

Yes, I am not teaching.  And I'm enjoying it.  Life is way too busy to think about the details of going to work!  And the weather doesn't hurt either.
Yesterday, we went to London for another major check-up.  It seems Jim has lost about 19 pounds since our May appointment!  Too much.  So plans are underway for a feeding tube.  I must say I never expected to be looking forward to this addition but it will be good not to have to encourage him to eat more and to find food he doesn't choke on.  He will still be able to eat when he wishes to.  The procedure (not a surgery!) will be in 3 weeks or so. No time has been booked yet.
We are also now the owners of a suction pump that can be used to clean out his mouth when extra food or phlegm is lodged there.  We need to pick up a Yankauer catheter - should have got it when we picked up the machine but thought it would come with it.  That looks like what the dentist uses in your mouth to clean out stuff.
Yesterday was a hard day for Jim.  He experienced many coughing spells and found he was extremely tired last night.  He had another choking spell this morning and besides being a little scary, it zaps him of his energy.  However a good nap this afternoon and he's feeling much better.  He also ate and drank a lot more today.
His speech is pretty much limited to his machine.  What a life saver that machine is.  He is using it with more ease and initiates some conversation with it.
We hope to leave for some holidays on Monday by flying to Newfoundland.  I hope that he finds this relaxing and that we can manage all the machines he hopes to take along.  Our friends might find that they will have to carry more than they planned!
As always we continue to trust that God is walking with us through this - both the tough times and the good times.  We still covet your prayers and support.

This is the scooter!