Thursday, 21 July 2016
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.
Wednesday, 15 June 2016
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.
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.
Sunday, 8 May 2016
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
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
Monday, 4 April 2016
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
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.
Saturday, 19 March 2016
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!
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!
Sunday, 27 December 2015
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.
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.
Wednesday, 9 December 2015
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.
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.
Wednesday, 7 October 2015
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.
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.
Wednesday, 16 September 2015
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.
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.
Saturday, 29 August 2015
Summer Update
August 29, 2015
Alas, the summer is almost over. But it's been a good summer. We were able to spend time at the cottage, traveled for a week to visit Trish and Jay, and had them come to visit us too. Jim spent a week fishing north of Thunder Bay and thoroughly enjoyed his stay there. Time spent with family and friends is always a good thing.
He has been using his Bi-Pap machine regularly while he sleeps and when it is working right, it is very quiet. When it is leaking air, it is very annoying. But that seems to be better now. Once, he had the harness on upside down and it was quite loud! He also has a cough-assist machine which he uses a couple of times a day to help clear his lungs and keep them expanded. His Accent speech machine is being used quite regularly and he is learning to converse with it. Eating and speaking continue to decline. He takes so long to eat that he continues to lose weight. It is hard to try to provide extra food for him between meals and not eat myself. His stuff (like smoothies) tastes so good! Tough on my diet.
Jim's newest machine is a scooter. We got it yesterday and look forward to getting proficient in driving it. It is a mobility scooter meant for outdoor travel. It should be fun to use when we go camping next week. Friends have promised to help us load and unload it into and out of the truck.
What would we do without friends?
Our next appointment with all the specialists is in September. I don't expect they will tell us much new. But it is encouraging to meet with them and share in their knowledge.
Until next time....
Alas, the summer is almost over. But it's been a good summer. We were able to spend time at the cottage, traveled for a week to visit Trish and Jay, and had them come to visit us too. Jim spent a week fishing north of Thunder Bay and thoroughly enjoyed his stay there. Time spent with family and friends is always a good thing.
He has been using his Bi-Pap machine regularly while he sleeps and when it is working right, it is very quiet. When it is leaking air, it is very annoying. But that seems to be better now. Once, he had the harness on upside down and it was quite loud! He also has a cough-assist machine which he uses a couple of times a day to help clear his lungs and keep them expanded. His Accent speech machine is being used quite regularly and he is learning to converse with it. Eating and speaking continue to decline. He takes so long to eat that he continues to lose weight. It is hard to try to provide extra food for him between meals and not eat myself. His stuff (like smoothies) tastes so good! Tough on my diet.
Jim's newest machine is a scooter. We got it yesterday and look forward to getting proficient in driving it. It is a mobility scooter meant for outdoor travel. It should be fun to use when we go camping next week. Friends have promised to help us load and unload it into and out of the truck.
What would we do without friends?
Our next appointment with all the specialists is in September. I don't expect they will tell us much new. But it is encouraging to meet with them and share in their knowledge.
Until next time....
Thursday, 2 July 2015
July Update
It's been an interesting couple of weeks since my last post. I've retired! That comes with mixed feelings but mostly good ones. The holidays are part of a regular routine so the change will be there in September.
Jim's speech seems to be declining a little faster and we are looking forward to getting a machine called an Accent which will speak for him. It is on order and he will need some training but with some practice it will help him communicate with family and friends. Even I have difficulty understanding him much of the time - so frustrating for everyone.
The Bi-Pap machine arrived. It is used at night and gives his lung muscles a rest. He is still adjusting to using this machine and sleeps with it as often as without it. Fortunately, his sleep is still pretty good.
Earlier this week we went to see the naturopath in Barrie again. He has prescribed many vitamins and preparations to be taken at specific times and in specific amounts We will need to put all of it on a full sized calendar to keep track of it. He believes it will help clear out toxins and give him more energy. This should help slow down the progression of the disease.
We spent a day in Kingston visiting with Jim's two sisters and families and a cousin. It was good to connect with them but it was emotional too.
Now we are sitting at the cottage and enjoying some beautiful sunshine and wonderful scenery. We look forward to seeing our kids and grandkids tomorrow. The support we get from everyone, especially our family, continues to feed our souls. We are truly blessed.
Saturday, 13 June 2015
Walk for ALS
This terrific group of people joined the organized Walk for ALS in Waterloo this morning. We were Team Curry and all of us completed the 5 km walk with about 250 more people. It was a great time and Jim and I are still overwhelmed by all the personal support we received. He was surprised when 13 people from Quest showed up unexpectedly to join us on the walk and continued to be surprised when they announced that Quest Brands was the corporate sponsor. Our good friend, Bubbles the Clown also came and created balloon sculptures for many little people. Lots of fun. Jim completed the walk in fine style and with energy to spare. It was also good to chat with others who have gone through the ALS journey or are still going through it. Some have participated in these walks for 16 years, That's a commitment! We say thank you to everyone who sponsored us, prayed for us or walked with us. You're the best!
As far as Jim's health goes, we were reminded of the ongoing concerns when we got a call this afternoon from the respiratory therapist who will be coming next week to show us how the Bi-Pap machine works, It will help him get more oxygen when he sleeps. She also mentioned that he will be learning to use a Cough Assist machine. Reality....
Our days are still fairy normal, at least between appointments. He is part of a research study group and has several appointments in London in a two week time span so it feels very busy. However, he can go to these by himself and that frees me up too. He continues to work and his spirits are good. He is so thankful for all the concern shown and can get quite emotional (a normal side effect of the disease).
He is most happy when he can help others and was able to help Matt with building a playground structure. This was very satisfying. Some day that will be too difficult and the memories will have to suffice. We try to create lots of memories!
Tuesday, 5 May 2015
May 5, 2015
Today we went to London for a round of appointments with various departments. Our day began at 9 and we finished just after 4 so it was a long day. We didn't learn much, Jim has a weak neck and the good news is that there is a brace we will get that will help support his chin. He is looking forward to using it but we need to order it first. There doesn't seem to be significant decline in other areas from our appointment in February and that is good news. He is encouraged to remain active, eat healthy (but not lose weight since weight would include muscle mass), practice coughing, and push himself to continue normally but not overdo it. He is also going to try to participate in some research studies if possible. It may depend on whether he has enough lung capacity. We feel that the team in London is an excellent group of people and we are well supported. So life continues and we celebrate every day, sometimes cheerfully and sometimes reluctantly. We have a God who loves us and knows our needs better than we do.
Today we went to London for a round of appointments with various departments. Our day began at 9 and we finished just after 4 so it was a long day. We didn't learn much, Jim has a weak neck and the good news is that there is a brace we will get that will help support his chin. He is looking forward to using it but we need to order it first. There doesn't seem to be significant decline in other areas from our appointment in February and that is good news. He is encouraged to remain active, eat healthy (but not lose weight since weight would include muscle mass), practice coughing, and push himself to continue normally but not overdo it. He is also going to try to participate in some research studies if possible. It may depend on whether he has enough lung capacity. We feel that the team in London is an excellent group of people and we are well supported. So life continues and we celebrate every day, sometimes cheerfully and sometimes reluctantly. We have a God who loves us and knows our needs better than we do.
Wednesday, 8 April 2015
Appointments
April 8, 2015
Yesterday Jim met with the speech pathologist who did a thorough assessment. She is putting an exercise regime together to help him strengthen some smaller muscles to aid in word formation. He will continue to meet with her a couple times a week to get this going.
Today we met with a naturopath in Barrie. He has a unique way of looking at the body to determine what is causing problems. We spent several hours with him for assessment. He has discovered a few issues that need to be cleared up:
-low stomach acid
-a polio virus in 2 of his teeth
-parasites in his stomach
-a reaction to paladium (found in the white gold of his wedding ring) that causes problems in the bronchii
-some problems in the kidney and spleen (some inflammation and I don't remember the rest)
He has received some supplements to help fix these up. The doctor is quite sure that these treatments will produce positive results. We will see him again in about 10 weeks.
We were able to visit with our dear friend, Rachel, following our appointment. She faces her own challenges with a return of cancer, so prayers are appreciated for her too.
Thank yo all for your continued support.
Yesterday Jim met with the speech pathologist who did a thorough assessment. She is putting an exercise regime together to help him strengthen some smaller muscles to aid in word formation. He will continue to meet with her a couple times a week to get this going.
Today we met with a naturopath in Barrie. He has a unique way of looking at the body to determine what is causing problems. We spent several hours with him for assessment. He has discovered a few issues that need to be cleared up:
-low stomach acid
-a polio virus in 2 of his teeth
-parasites in his stomach
-a reaction to paladium (found in the white gold of his wedding ring) that causes problems in the bronchii
-some problems in the kidney and spleen (some inflammation and I don't remember the rest)
He has received some supplements to help fix these up. The doctor is quite sure that these treatments will produce positive results. We will see him again in about 10 weeks.
We were able to visit with our dear friend, Rachel, following our appointment. She faces her own challenges with a return of cancer, so prayers are appreciated for her too.
Thank yo all for your continued support.
Monday, 23 March 2015
Making Memories
As most of you know, we spent a week in Punta Cana at Memories Splash with our children and grandchildren. What a terrific time we had! The weather was wonderful, the scenery beautiful and the food delicious. Best of all we enjoyed being with each other and letting the cousins get to know each other. Jim was able to keep up with most of the activities although his pace was a bit slow and he needed regular rest. He was relieved to know that he can still play golf. The guys went out for an afternoon and he can still swing a club. He also discovered that a deep tissue massage goes a long way to relieving the pain he gets in his lower back. He hopes to make that a regular part of his routine.
His balance is a bit off and walking in the waves did not go so well. But sitting in a lounge chair at the beach or by the pool works great.
We are wonderfully blessed with a caring family and concerned friends. Your prayers and comments are much appreciated.
What's next? In April we will see a naturopath and find out if there's anything we can do to slow down the progress of this disease. We will continue to praise God for His sustaining power and trust Him for all the days He gives us.
His balance is a bit off and walking in the waves did not go so well. But sitting in a lounge chair at the beach or by the pool works great.
We are wonderfully blessed with a caring family and concerned friends. Your prayers and comments are much appreciated.
What's next? In April we will see a naturopath and find out if there's anything we can do to slow down the progress of this disease. We will continue to praise God for His sustaining power and trust Him for all the days He gives us.
Wednesday, 4 March 2015
Brief update.
Today Jim went to see a respirologist. (I am learning that there are many more jobs that I'd never heard of or thought of before.) A while ago he had completed a breathing test (standard procedure) and the results were poor. Part of that, we felt, was due to his being unable to get a tight seal around the breathing tube because of his weak lip following lip cancer surgery a few years ago. The respirologist did the test again and the results were somewhat better but not great. He has only partial use of his lungs - the muscles are waning. This has not affected his normal functioning - he can still do stairs without being short of breath. However, a fast walk tires him quicker than it used to. He will get an appointment soon to teach him how to breath better. I hope to go with him for that. The respirologist did say that the oxygen levels in his blood are normal and that is good.
Most of the time it is easy to go on and put the disease out of mind. However, each little set back makes me realize that the future is not so rosy. Jim has a remarkable sense of well being and makes a point of enjoying lots of little things. He makes plans for the summer and looks forward to spending time with family and friends. I try to stay positive too, not only for his sake, but for me too. I am learning that God has a plan through all of this and will try to take only one day at a time.
Most of the time it is easy to go on and put the disease out of mind. However, each little set back makes me realize that the future is not so rosy. Jim has a remarkable sense of well being and makes a point of enjoying lots of little things. He makes plans for the summer and looks forward to spending time with family and friends. I try to stay positive too, not only for his sake, but for me too. I am learning that God has a plan through all of this and will try to take only one day at a time.
Thursday, 19 February 2015
Follow up Appointment
Today we journeyed back to London for a follow up appointment with Dr. Shoesmith. As before, we were impressed with her caring attitude and attention. She reminded us that the blood test done in January in London had shown a high level of inflammation which was unaccounted for. A follow up blood test done in Palmerston showed normal levels. She felt it was good to check further and did a lumbar puncture and had another blood test done. We should know the results by tomorrow, Monday at the latest. What might it mean? A high level of inflammation might indicate something else going on in the brain and could very well be treatable. The likelihood of this is slim, given the normal blood test results from the second blood test. We will keep you informed.
Meanwhile, life goes on and things have not changed much. Jim is taking some medication which might slow down the progress and his body has accepted this without side effects. He has also made an appointment to see a naturopath who deals mostly with ALS patients and looks forward to hearing what he might say. That will be in April.
We remain at peace about the situation and know that this is only possible with the help of the Holy Spirit. God is our strength and our salvation. May we rest in His almighty arms.
Meanwhile, life goes on and things have not changed much. Jim is taking some medication which might slow down the progress and his body has accepted this without side effects. He has also made an appointment to see a naturopath who deals mostly with ALS patients and looks forward to hearing what he might say. That will be in April.
We remain at peace about the situation and know that this is only possible with the help of the Holy Spirit. God is our strength and our salvation. May we rest in His almighty arms.
Friday, 16 January 2015
Surprised by Medical Care
Friday, January 16
I had not planned to write so soon but I must comment on the medical care Jim has been receiving from the ALS neurologist in London. She personally called him twice yesterday and again this evening at 7 pm.! This is not what I would have expected. As for the reason, they found elevated levels of inflammation in his blood work that was taken on Tuesday and they need to schedule more tests for him to determine what is going on. Of course, we have a glimmer of hope that perhaps there is something else causing the symptoms he is experiencing. So we need to be patient for awhile and just keep on going. He will see her again on February 19. Her attention to his case has truly helped us to feel that she cares.
The response to my first blog has been overwhelming in a very positive way. Your thoughts and prayers are truly appreciated. We serve a mighty God who provides for all our needs in various ways. You are truly blessing us.
I had not planned to write so soon but I must comment on the medical care Jim has been receiving from the ALS neurologist in London. She personally called him twice yesterday and again this evening at 7 pm.! This is not what I would have expected. As for the reason, they found elevated levels of inflammation in his blood work that was taken on Tuesday and they need to schedule more tests for him to determine what is going on. Of course, we have a glimmer of hope that perhaps there is something else causing the symptoms he is experiencing. So we need to be patient for awhile and just keep on going. He will see her again on February 19. Her attention to his case has truly helped us to feel that she cares.
The response to my first blog has been overwhelming in a very positive way. Your thoughts and prayers are truly appreciated. We serve a mighty God who provides for all our needs in various ways. You are truly blessing us.
Wednesday, 14 January 2015
How do you begin to describe what it is like to find out that your husband has ALS? Let me start at the journey so far.
In April of 2014 it was noticeable that Jim was experiencing difficulties with his speech. His words were slurred and sometimes it was difficult to understand him. This was especially true if he was tired. By July he had an appointment to see a neurologist in Kitchener. Matt went with him to his appointment and the verdict was a condition called myasthenia gravis. He was given medication to try and life went on. His neurologist recommended that he see a specialist for this and the top North American specialist practised in London. On December 10 we (Jim, Karina and I) met with the specialist. At this time Myasthenia gravis was ruled out and ALS was suggested as the probably reason for the speech and swallowing difficulties. An ALS neurologist was recommended and today we visited with her. She has confirmed the diagnosis and explained that he has Bulbar ALS which simply means that his disease started with speech and swallowing difficulties. She doesn't think it is a fast progressing disease based on the progress so far. However each case is unique and there is no way to tell what will happen. She cautioned us to be careful with our own research on line since there is a lot of good mixed in with a lot of not so good. She recommended two sites: ALS.com and alsworldwide. We haven't gone there yet.
A wonderful team at the hospital will be there for Jim and he will start seeing them in April. He can also draw on local support groups. He will probably be taking medication to slow the progress of the disease.
So, where are we now? We are at peace with it. We have been surrounded by a community of support who have prayed for us. That is wonderful. Of course, we have our concerns, our worries and our questions but they do not dominate our thinking. Life goes on as normal as possible.
I am strongly considering retiring after June and that gives me mixed feelings. I try to focus on the possibility of taking a September vacation and then it sounds good.
Jim is not ready to slow down with work yet but feels he has flexibility to meet his health needs.
So there you have it. My first blog and some simple thoughts.
In April of 2014 it was noticeable that Jim was experiencing difficulties with his speech. His words were slurred and sometimes it was difficult to understand him. This was especially true if he was tired. By July he had an appointment to see a neurologist in Kitchener. Matt went with him to his appointment and the verdict was a condition called myasthenia gravis. He was given medication to try and life went on. His neurologist recommended that he see a specialist for this and the top North American specialist practised in London. On December 10 we (Jim, Karina and I) met with the specialist. At this time Myasthenia gravis was ruled out and ALS was suggested as the probably reason for the speech and swallowing difficulties. An ALS neurologist was recommended and today we visited with her. She has confirmed the diagnosis and explained that he has Bulbar ALS which simply means that his disease started with speech and swallowing difficulties. She doesn't think it is a fast progressing disease based on the progress so far. However each case is unique and there is no way to tell what will happen. She cautioned us to be careful with our own research on line since there is a lot of good mixed in with a lot of not so good. She recommended two sites: ALS.com and alsworldwide. We haven't gone there yet.
A wonderful team at the hospital will be there for Jim and he will start seeing them in April. He can also draw on local support groups. He will probably be taking medication to slow the progress of the disease.
So, where are we now? We are at peace with it. We have been surrounded by a community of support who have prayed for us. That is wonderful. Of course, we have our concerns, our worries and our questions but they do not dominate our thinking. Life goes on as normal as possible.
I am strongly considering retiring after June and that gives me mixed feelings. I try to focus on the possibility of taking a September vacation and then it sounds good.
Jim is not ready to slow down with work yet but feels he has flexibility to meet his health needs.
So there you have it. My first blog and some simple thoughts.
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