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.

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!

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.

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.

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.

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.

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.