Notes on Life #2

Well, February is nearly ended and I need to put together my recap of the month... wish I could remember each moment, but instead I tend to remember things in batches... here are some of the month's highlights...

Becoming a Zen master…

Patrick had his quarterly ALS clinic appointment in February.  The clinic provides treatment as a multi-disciplinary approach with team members including: physical therapist, occupational therapist, neurologist, RN case manager, respiratory specialist, research nurse and social worker.  You meet with the relative team members at each appointment based on your symptoms and what specialists you need at that point. 

At this meeting, because of the challenges Patrick has with his hands, he met with the physical therapist, Michelle.  According to Michelle, Patrick needs to become a "Zen master."  As a Zen master, you must move slowly, thinking only of the movements you need to make and remove the “monkey brain” as they say in meditation.  .  . 

So Michelle says, when you are standing up or walking "clear your head," move slowly and think about the motions required to do the task.  I spend quite a bit more time these days considering how we move, the body truly is an amazing machine and until it fails us, we don't appreciate how all the various parts work together.

I suspect that Patrick will become the Zen master, he is pretty good at “clearing his thoughts.”  I have to say that this would be near impossible for me as the constant chatter in my brain would be difficult to control… but I've decided to give it a try also because I think the benefit of developing this skill would reduce stress and provide moments of peace.  My sister, Denise, sent Patrick some meditation books and I've decided to read up on this – so I’ll keep you posted on my progress.

Managing the surreal…

We met with the ALS Association Patient Coordinator and Premier Medical Representative to assess our house and discuss what the association offers to PALS (patients with ALS – it’s an acronym used quite often in the ALS world).  The meeting was a bit of an eye opener for Patrick and I, it’s strange to have people discuss so directly about “when you are in a wheel chair,” “or when you can’t use your hands to brace your falls,” or “showering can be quite draining and stressful.”  From a completely logical perspective we know the challenges ahead (we've read about them) but to talk in such a direct manner is quite surreal.   The meeting was immediately prior to Disneyland and I'm not sure if that was a positive or negative in terms of timing, but the meeting was informative and provided us with some basic information on the help that the association provides to patients.

The Family at Disneyland

Visiting Disneyland…

We spent the last week of January in the “happiest place on earth” with our daughter, Corrinne and grandsons, Anthony and Christian.  We stayed in a Disneyland timeshare at the Grand Californian.  It was very nice with two bedrooms, three bathrooms and a full kitchen.  There were actually two balconies in our room overlooking the boardwalk in California Adventure.  The timeshare allowed us to walk directly into Disney’s California Adventure and wasn't far from Disneyland itself.


Anthony fighting Darth Vader

One of the highlights from the trip includes Anthony and Christian learning the ways of the Jedi and defeating the evil Darth Vader… (Alas, the world is safer now!)

In true Timmons form, Christian (age 5) developed OCD (obsessive compulsive disorder) over the Tower of Terror ride. He talked about it obsessively, going back and forth over whether he would ride it; he was certain that it was a hotel and people were staying there and that ghosts ran the halls.  I finally decided to take him over to the ride to show him that he was too short to ride it and put an end to his obsessing.  Boy, was I surprised when I found out he WAS tall enough – so of course this just heightened his obsession.  Patrick got fast passes for it and Christian continued to talk and debate going on the ride. 



Christian the Jedi

Finally, I told him that grandma says “no” – you can’t go on it.  I thought that was the last of it, but unbeknownst to me he told Patrick privately, “grandpa if you want to go on the Tower of Terror I’ll go with you, it’s your decision.”

No, they never did go on the Tower of Terror, but Christian is still holding on to the fast passes because “I’m going on the Tower of Terror with grandpa next time.”

Good Times and Friends

Christian, Tigger and Anthony

Lately, we've spent some great evenings with friends.  Patrick has a couple of old work buddies, Vineet and Johannes and we had a wonderful dinner with their families.  It’s always a little intimidating for me to have dinner at Vineet’s house because his wife, Pooja is such a wonderful cook.  Her cooking is all Patrick talks about for weeks afterwards; I can’t really blame him for all the high praise because her food really is that good. Makes me think I should add to my repertoire of about five recipes…nah, it just means we should eat over at Vineet’s house more!

We also had a nice evening over at the Smith’s house (Mike, Laura & Amanda).  Amanda has been in my Girl Scout troop since kindergarten and we've enjoyed spending time with the Smiths over the years. Laura has her own challenges with MS and has always inspired me with her “glass half full” attitude.  I've decided of late that it’s not what is put in front of us that determines who we are; instead it’s how we manage what is put in front of us.  It doesn't mean we don’t all have a right to wallow over our challenges now and again, but it does mean that “we have a choice on how we view the day…”  So wallow occasionally, but don’t waste too much time, because you can’t get it back.

Things to Remember...

The physical therapist, Michele, offered suggestions for adaptive living, to help with "normal" activities or tasks.  For Patrick, at this point, his greatest challenge is with his right hand which makes it difficult to button his shirt, or straighten his collar.  So each morning I help him with these tasks before we both start the day - its become a bit of a ritual.  At the clinic, Michele discussed using a "button device" that helps to fasten buttons after he mentioned that he has difficulty with these tasks.

Michele left us for a moment to go get the device, during this time Patrick looked at me and said "do you mind buttoning my shirt?" - I said no, does it bother you - he said no.  So we've opted for not using the button tool, we sort of enjoy the morning ritual and intimacy it brings - remember it's all the way you look at it.

Things to look forward to…

Our days are busy with things to look forward to and I'm sure yours are too...

Lego Store - Patrick, Hulk and Anthony

MARCH: Spring Training with the Giants in Phoenix with my sister, Denise
MARCH: Caitlin's 18th Birthday!
APRIL: Our granddaughter and future Girl Scout is due Apr 15th (yes just like taxes due April 15) - ha, I made myself laugh... (accountant humor)
MAY: France/England/Scotland Trip
MAY: Caitlin's High School Graduation
JUNE: Visit Patrick's family in Denver
JUNE: Our 30^th Wedding Anniversary