The Final Leg

Every journey has an end and this journey with ALS came crashing to an end on July 3.  Despite knowing the end, the final step was still a surprise we were not expecting.  The 4 am phone call from the hospital plays over and over in my head. Although Jim said he prayed nightly to go home to the Lord, somehow it was too soon.  There was no warning that this would be the time.  Jim was being treated for a possible infection in his lungs but thought he'd be out again on Monday and we'd be back at the cottage.  But God had better timing for all of us.
We had rented a cottage for our family in Grand Bend and all the kids and grandkids were there.  No one had to be summoned from far away or from work.  We could cry together and go through all those details as a family.  By 6 am, our kids were with me as we journeyed to the hospital to get closure as we said goodby to Jim's earthly shell.  Then we met with the funeral director, the pastor and a number of friends from church and some siblings.  Phone calls and emails were sent.  
With the details sorted out we were able to spend a few more days altogether at the cottage.  What a blessing that was!  Spending time with grandchildren is the best way to focus on other things. 
The visitation on Friday and the funeral on Saturday were incredibly uplifting as hundreds of people showed their respect for Jim and support for us.  Everyone agreed that Jim would be with the Lord, whether he was dancing or fishing!  I don't know just what heaven will be like, but I am sure that with the Lord, it will be so much better than our temporary existence on this planet. 
The last two weeks have been filled with many things.  Tidying up many details, visiting with my sisters, and chatting with friends and family.  Grief is there but thankfulness dominates! Jim did not have to suffer as long as many ALS patients do.  He no longer has to deal with the frustration of losing so many things we take for granted, like breathing, walking and talking.  Our children have been so supportive.  I am taken well care of financially.  I have friends and family and church to support me.  God is only a prayer away.  This journey ends but life continues.  
To all of you who have journeyed with me, thank you.  Your prayers and support have been felt and appreciated. 

Walking on.

Wow!  We had a tremendous walk in Waterloo on Saturday.  Over 50 people joined our team to participate in the ALS walk.  $110 000 was raised that day in Waterloo.  Thank you to everyone who helped make this day so successful.  Jim also appreciated all the support he received and all the help that was offered in pushing the wheelchair over some quite bumpy places.  He was tired but quite satisfied.
Our world seems to be shrinking and I am learning to be okay with that.  His ability to get out and about are diminishing and he also appreciates it when I am around.  That means more at home time.  How thankful we are for a pleasant home and a wonderful community.  Visits really lift our spirits.
His weight continues to decline and his muscle strength deteriorates. He is still able to get around on his own and for this I am thankful too.
Trish, our American daughter, and her kids are up for the rest of the month.  How fun it is to have children around 24/7. She is very good at keeping them entertained, especially when Jim is trying to rest. We appreciate her giving up her time, her husband, and her home to spend time with us.

Accessibility Steps

Well, we've taken the step and had a ramp installed in the garage.  It's a proactive step and should help when Jim finds steps difficult - sometimes when he's quite tired it is already an issue.  We have also ordered a walker from ALS and that is another proactive step.  He still gets around okay but some days his balance seems off.  With the wheelchair ready to use when there are distances to cover, we've got our bases covered - for now.
Life is good when it is completed in small chunks.  A very busy day leaves him tired but generally satisfied.  We have gone through a couple of weeks of intestinal difficulties but things seem to be on the mend.  He has more energy and the sparkle is back in his eyes. Diet now has changed and I am preparing all the food he eats.  We have set aside the pre-made formula and we're trying to input enough calories with regular food.  It's an adventure and we hope it works.  Weight loss is still an issue but we'll keep trying.
We are aiming to complete the ALS walk on June 11 and are thrilled with the number of people who plan to come and join us and the people who have supported the cause.  If you want to join the team, go to www.ALS.ca and sign up to join Jim's team. If you just want to support us, that can also be done online or you can contact any of the family.  We're all walking together. Jim will be pushed in his chair along the trail and there are lots of people willing to help with that too.
Family and friends and church and community:  all so supportive.  We couldn't do this without you.  Your prayers uphold us when we feel weak and your care is evident in the concern you show. God bless each of you

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.