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.
Friday 16 January 2015
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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