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.
Wednesday, 7 October 2015
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.
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