How is Patrick Doing? #2

I've struggled this month with an update on "How Patrick is Doing."  I think for me these are the hardest to write, hence I've only posted one - back in March... There are a number of reasons I struggle with it.  Primarily, I don't really know what it's like, I'm merely the sad daily observer to his changing issues and challenges.  I am by definition a caregiver so my perception is perhaps different and jaded by the role in which I play.

So, as you read this blog, I ask you dear reader to remember that this is coming from a caregiver's perspective not the PALS (Person with ALS).

Generally, if someone asks me "how is Patrick doing," I say he's progressing and follow it up with ALS is a degenerative disease, so you are always better yesterday than today. The nitty gritty detail of ALS is not kind, pretty or enjoyable to share and discuss.  It's similar to when your child asks you "where do babies come from..." - they want the truth, but you have to consider how much detail in that moment is appropriate.

So my second struggle is how much do I post on this blog... My feeling at this moment, is to share some things to give you an idea of the challenges, but stay away from the gory details.  There is a blog done by an ALS patient, Susan, in our support group and she writes from a patient perspective - I think she does a great job talking about the daily struggles.  Here is a link to her blog:

http://www.susanssteps.com/

The journey with ALS is extremely individual based on many factors, including, but not limited to, the initial affected area, and the rate it progresses. In Susan's case the ALS started in her legs, so, that is her most challenging area. This differs from Patrick who's initial area was his right hand.

Ok, here is "how is Patrick doing update"... basically he's progressing...

The fasciculations that started in his right hand and arm have progressed to his left hand and arm as well as his legs.  He still has strength in his legs although reduced. His balance is off and he's had a couple falls and a few close calls. The lift we've put off is scheduled for end of August, beginning of September time frame. The stairs are becoming difficult due to his balance issues.

Fatigue is a constant issue which is typical with ALS patients. The simple tasks such as the morning ritual of bathing, dressing, teeth brushing takes longer and is tiring. Initially, Patrick suffered fatigue generally in the late afternoon, but now it tends to be connected to performing various tasks. Conserving strength is important, so that energy is spent on more important activities than the daily tasks.

Patrick continues to work at Blue Shield although he now works at home three days a week. The three days at home are much easier than the two in the office  The mobility challenges and fatigue make those days in the office difficult. We are starting to discuss the time frame for Patrick to go onto disability, this day is approaching.

The continual loss of mobility is difficult to watch, especially with the understanding that you don't get it back. I know that when I started putting on and taking off his shoes that he would never again do this task. There is a sadness whenever these changes take place - I feel it, so I can only assume he does too. I'm learning patience as I watch him struggle with some tasks, I know the importance of maintaining independence as long as possible.

If you are interested in the disease, ALS, there is a YouTube video that was created by Forbes Norris ALS Clinic that does a good job of explaining the disease and the progression process. It's titled, "The ABC's of ALS," if you're interested in the disease in general I recommend you view it.  Here is the link:

http://www.youtube.com/watch?v=0tS4oTKRYfA

There are three parts - the first does a good job explaining the disease. Dallas, the presenter, is the research nurse that we've met a few times at the Forbes Norris Clinic. She keeps us up to date on research, potential upcoming studies and new things happening in the ALS world.

We continue to work through the changes and find alternatives to managing daily activities. We are fortunate to have a strong group of family and friends that help out with various items. Thanks to all you unsung heroes that provide assistance when needed.

Seize the day my friends...