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.

8 comments:

Anja said...

Thanks for starting a blog Annette

Stu and Lois said...

Thank's for that Annette, it will feel like we are walking long side you and Jim as you keep us updated. Blessings to you both, Stuff and Lois

Nanda said...

This leaves me quiet .... thinking of you, Jim and the kids as you begin this new journey.

Hank & Gerty Ottens said...

Thank you for the blog. We will be praying and thinking of you on your journey. hugs

Hank & Gerty Ottens said...

Thank you for the blog. We will be praying and thinking of you on your journey. hugs

Glynis said...

Your strength and resolve to 'journey on' is admirable, Annette, and I know it is because of your strong faith. Sometimes you both may falter because you are human, but most times I know you will lean on Jesus and you will be lifted up to face one day at a time. Already people are commenting on your positive attitudes. That will be a big help on this journey. Prayers abound already for you, our friends. It sounds like you are taking advantage of all the resources out there, too. Good for you. Carry on with 'normal.' And brilliant idea, this blog is!

Maureen said...

Annette, you and Jim are in my prayers. Thank you for sharing.

Melanie Bartels said...

Praying for your family and that our great and merciful Father will continue to give you peace through the tough times.