Stealing from myself...

I posted this on the national ALSA website today, but wanted to add it to my blog.

Life is good. I agree with Lou Gehrig: focus on what we are lucky for, which in my case is the support and love of family and friends and the ability to function still in many aspects of my life. My symptoms started in 2012, ironically while in yoga class, when my large right leg muscles cramped terribly. I have cramping on and off since then. In 2013, I started limping, and my GP ordered MRIs. Finding nothing, I was sent to the neurologist. My husband's mother had been diagnosed with ALS in 2002 and died six months later, so we always asked the doctors about that possibility. No doctor is eager to diagnose ALS, however, and so it was not until Mayo Rochester said it was likely ALS that one did. We were prepared for that, and although hoped to be the 5% that see reversal or no progression, that was not the case. All limbs are affected to some degree, but I focus on what I can do still. I am working (and will, as long as I can talk and type!), and walk slowly with a cane and ankle support orthotic. We choose to see the positives and leave the negatives to deal with themselves. We are preparing, but in the meantime, life is to be lived and enjoyed. I value every sunrise and sunset and all forms of weather, and I appreciate my family and friends and the wonderful community of Havre, Montana. None of us are guaranteed anything, and I will just keep my goals of seeing my 13 year old daughter graduate high school in 2018, and see my 21 year old son find his own best path in life. Life is good.

It is the 75th anniversary year of Lou Gehrig's farewell speech to baseball.  In that time, only one drug has been approved by the FDA for use to simply delay by two months or so the progression of ALS.  We need to look at this disease from every aspect, and find some treatments and, dare I wish, a cure.

Easter has come and gone, but the remo goes on and on

I can't blame it on the contractor, because I took so long deciding some things, but oh man, are we all so very tired of this!  Blessed that we have the ability to make it happen, but the strain of shifting beds for 2 months is getting to us.

Easter was nice.  We spent it with the Kuceras. Margaret and I have become close, and we have good talks about motherhood and facing the end while leaving something for our kids to remember us by.  She is writing her story, and has encouraged me to also write my autobiography so my kids will know my life.  I hope I get around to it while I can still type!

Florida was lovely, but flying is not a great experience.  I do not want to be so very safe that we have to go through the slog of security.  In the end, we will not protect against someone who really wants to hurt America again.  They have beaten us to some extent simply by making us do all this security.

That's what it takes to get anywhere far, though.  And it was nice to see an old friend and just talk and talk and talk.  Nice to see my brother Charles and niece Kim and her boyfriend, too.  All among the smell of jasmine!  Pretty amazing, coming from the brown cold of a northern Montana spring.

Progress isn't always a positive

Remodeling progress is a good thing, although we seem to be at a standstill at the moment.  We need windows, doors, casings, baseboards, a vanity, and bathroom fixtures.  I know it will all be grand when it comes in and is installed, but it's taking soooo long.

ALS progression is another thing entirely.  That's progressing way too quickly.  I am still ambulatory, but it's a struggle.  Stairs take both physical and mental strength to overcome.  My right arm is visibly decreasing, which makes me so sad, since I am right-handed.  And the right hand carries the melody in piano!

Still, life is good.  In mid-March, Paul, Caroline, and I went to Freezout Lake near Fairfield, MT, to see the snow geese congregate there.   We saw thousands upon thousands of geese and ducks.

Thursday Paul and I are flying to Orlando.  He has a regents conference.  I am going to spend Saturday with Cathy Martin.  We are a bit concerned about leaving the kids home, but now that Dolan is 21 (!), it should be safe and secure.

The sunset is beautiful again tonight.   Nice that it's almost 8 p.m. and just setting.

I need to shake this melancholy.  It's not born of ALS, though, as I often experienced such feelings when I didn't have ALS.  I think it will help if I come back from FL and a lot of the remodel is done.   I miss sleeping in my bed!  I also need to jettison STUFF.

Happy is the man who can carry his possessions on his shoulders.