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

Time

One of the greatest foes with ALS is time... As I write this it's February, and I wonder where did January go...  Often of late, I desperately want to stop time, to take a moment to process, consider, evaluate, and take stock.  Time however, continues and passes and the ability to stop it is not allowed.  There have been many science fiction movies and books written on time travel or living outside time, probably because we all have these periods when it moves far too quickly.

Buying for Time...

ALS is not a curable disease, my hope and prayers are that it will be one day and frankly the sooner the better, but today it is not. It's a degenerative disease that over time robs the person of any "voluntary" muscle function.  The rate of the disease varies and each patient's case is unique.  In Patrick's case, his symptoms started in his right hand which is by far his greatest challenge.  In any case, it means that our prayers and hopes revolve around trying to slow the disease down.  Patrick is on the medication, Rilutek, which in trials was found to increase the life of the patient by three months, however they are now finding it may actually be more like six months to two years.  Yes, we are buying time...

Moving too Fast...

Much of my anxiety these days stems from making sure that time is not wasted.  I'd like to say that I'm an expert at making the best of each moment, but not always.  In truth, day to day living requires that some moments are just not that awesome.  We all have to pay the bills, feed the dog, clean the laundry (my personal favorite) and answer the age old question of "what's for dinner." Of late I've also realized that some of the best moments are not planned, organized or coordinated - they just happen as a matter of happenstance.  It's the sunset I see from my living room window, the funny YouTube video of the baby basketball player, or the text from Patrick with a picture of Roxie sunbathing.  Great moments, that don't have a cost and require no planning.

Roxie

Managing Time...

Currently, there are so many things on my "to do" list (yes, I really do keep a written "to do" list) - I have for years.  Unfortunately, now the list is large and one line items include "remodel your house..." which in and of itself is many items.  I was given a wonderful piece of advice from a dear friend, facing her own family challenges, she said "you can't solve the world's problems in a day, so recognize this limitation and set daily goals that make you feel like you accomplished something."  A great piece of advice, I've been trying to remember.

Time Robbers...

Sadly, there are outside forces that rob us of our precious time.  We are challenged with health insurance issues that create anxiety and require constant vigilance and follow-up.  Frankly, I didn't really think too much about health insurance until recent years when we've really needed it.  This has caused much stress in our house over the past month wasting our precious time.

How do you spend your time...

Have you ever sat down and thought "what did I do today?"  I do this a lot, assessing time by the tasks I've completed or jobs I've processed.  I'm an accountant, we like to scratch things off the list... yep, its that "to do" list again.  As of this moment, I've decided to add to my "what did I do today" recap and consider the value of the day differently, to ask the question, did I hug my husband enough today, did I laugh with my children, check-in with my grand kids, sister and parents, scratch my dog and enjoy a moment with a friend or co-worker.  I think the value of the day goes up dramatically when looked at in this manner.

Anyway, my question to you is... "what did you do with your time today?"