Dog Days

August is nearing its middle. If I could bring myself to stay outside late, I'd perhaps see the Perseid meteor shower. I should; meteor showers are one of those amazing things not to be missed.

Seems these days I have a lot of "shoulds." I should record my voice. I should be doing range of motion exercises more. I should go through all my papers and correspondence. Oh, and I should write a book, write a column on infrastructure repair, write thank you notes. Yet my favorite thing is to sit in my chair on my ramp landing and watch Netflix or read or look at the garden. I feel unproductive!

I did return to work Monday. I know I still have something to offer, at least for a while. Talking is getting harder, and typing is pretty much two fingers, but I can offer students assistance, and set tutor schedules. Being at work is pretty easy--getting ready for work is a challenge.

My body still remembers being nimble, doing everything quickly, so taking 15 minutes to do something like putting underwear on is frustrating beyond belief. If I don't give myself an hour, I don't have time to do the basics. Thank goodness I never was a makeup wearer or did anything but brush my hair.

While I bemoan my slowness, I am facing having to have someone help me. Paul has been dressing me these past days just to save time. The reality is, I am losing the ability to do some aspects of dressing myself. And yet I can be thankful that I have assistance from my family. How do PALS manage without family?

I've promised to be joyful, and I can still find joy in each day. How can I not, on a lovely cool summer morning, or, as happened yesterday, a searing day gave way to a cool clear evening? Or when I accept help from people. I realized that while I am challenged to accept help willingly and graciously, allowing people to help me is a gift to them. Does that seem weird? It would to me, except I know how good I feel when I can do something that helps someone, such as when I all too briefly helped my mom in the nursing home. No, it's not all pleasant, but my family may come through this stronger. I have to believe some good can come of even this.

                                Our family reunion in Medway, Massachusetts, July 5, 2016.

Add caption

Lounging on 6/17/15

Lying in bed late today. Usually I am up around 7, if for nothing else but to pee, but today I lie here listening to Carole King on Echo. Rosie is sleeping by my feet, which feel a bit numb. I have played way too much Candy Crush.

I am not contributing enough to society. There is so much to do in life, and I just lie here. This is no way to live. I should be at the Boys and Girls Club skewering meat for the fair booth, but it really takes two good hands, and my right has faded from useful work.

I guess I did get Dolan up and to class. My voice can still do that. Is that a societal contribution?!

We are heading out Tuesday for Massachusetts. I am a bit uneasy about the accommodations. I am so capable in my own space here, and we will go from hotel to hotel without certain accessibility. Yet, I don't want to let fear of accessibility limit my traveling.

Road trip! Through the Bakken, which has slowed down considerably, then to Superior, then up through Canada to Ottawa and down into New York and Massachusetts. Gotta love our diverse, wonderful country (and Canada)! We'll go back through northern Ohio and Illinois and up to Minneapolis. Caroline has seen only MT, SD, WY, FL, VA, DC, NC--this will definitely broaden her perspective, if she can keep her eyes raised from a book or screen.

A PALS in Havre died four days ago. He was 52, and was diagnosed just within the last year. That leaves three of us that I know about, but we are all doing okay, considering.

Ruminations

Keeping my feet elevated to reduce swelling makes me think of those homes where people have plastic covers on their furniture to protect them. (Do people still do that, or did it die off in the '70s?) Elevating my feet does the trick, as medication is not indicated for  PALS as it dries us out. But as soon as I lower my chair, or get out of bed, my feet swell again.  Like the plastic covers, protection is achieved, but life is hampered by the means of protection.  I guess it all goes to the idea of security curtailing liberty. I have to find the happy medium.

I am sitting outside on a breezy Havre day, just watching the birds enjoy the garden as it is watered. Nice that something we do to benefit ourselves has a benefit for birds, too.  I don't think I can say that for the spraying we have done to make the lawn thrive.

I truly could live happily just sitting on my deck-ramp (dramp? reck?) watching the changes in the clouds, the trees, the garden. Then I feel bad that I am not helping with the housework, or yardwork. I can barely fold laundry now, though (who knew towels could be so heavy, or t-shirts so unwieldy?), and that was about the last task I could do. Feeling lazy is very unfamiliar, and quite distressing. Mostly, I think other family members think I am not contributing my fair share. I know they would demur if I asked them directly, so it's likely all in my own perception. Unfortunately, that it what a PALS is stuck with in the end: our perceptions.

Hillary Clinton is in the background doing her campaign ramp-up speech n Paul's computer. I was a Hillary supporter in 2008, and I support her now, although Bernie Sanders holds great appeal to my socialist heart. Still, he would be hard-pressed to win the general. Hillary will have a hard-enough time convincing a paternalistic society that a woman can lead our country, despite ample proof from other first world nations that women lead as well as or better than men. I am hopeful that she will become our first woman President, as she is clearly the best woman running, and her intelligence and ability are head and shoulders above her contenders.  I am appreciative of her (and Bernie's) willingness to take on the rigors of campaigning at an advanced age. I don't know many grandmothers/fathers who would put their country above their own desire to relax and enjoy a life well-lived. Even if ambition drives them, I say thank goodness.  Who else would do this tough business if they didn't have ambition and a desire to serve driving them?

Besides, I don't know that I will see another presidential election, so for me, it's now or never!!! Go, Hillary!!

Catching up

I've hit a game changer.  Tuesday I turned my head while in bed trying to turn over, and the room spun.  I turned back, and a few minutes later when I moved my head it happened again, only stronger.          I thought I was going to faint or throw up.  I managed to go to my Boys and Girls Club meeting, and work, and it seemed okay. Wednesday morning it was back with a vengeance, and I stayed home.  Now every time I move my head too quickly, the vertigo and nausea overcome me.

I promised this blog would focus on joy, but I should have known there would be bad days.  I just hate feeling dizzy and nauseous. I've been pretty good about all the other ALS stuff, I think, but this is different.  I feel like I can't function.

I'm not driving now.  I'm trying to remember when I made myself stop. I think it was just before we went to FL.  Dolan and Paul have stepped up gallantly, and one day I ventured to roll home via sidewalks and roads. That was really quite easy and pleasant, although I wondered if I looked like an odd old lady doing it. Why do I worry how I appear to others?!

A local kid who Dolan suggested is redoing my back garden. Rototilling and everything.  I am so eager to see it all redone.

These are "before" pictures.  Lots of green, but it's mostly grass that took over the garden.  Michael Bakke has it all dug up and cleared and it awaits the rototill on Saturday.  I am so excited to see the finished project!  

I will have to wait until Wednesday the 13th, though.  Paul and I are heading to DC Saturday for an ALS conference and lobbying effort.  We are a bit concerned about my traveling by plane with my vertigo, but I do want to see DC one more time.

Life is good, even with this new condition.  I just have to adjust my thinking.  It helps when I look at this view to remember what a wonderful life I have, and that I appreciate it even more now.

Florida

We have been here since Saturday the 4th.  Ah, Florida.  It's eye candy for a northern plains resident.  Spring has not yet come to Havre, so all the lush vegetation is restful.  The throngs of people, however, are exhausting, as is the varying accessibility.

I think this will be my last Florida vacation, but I am so glad we made the effort.  Paul and the kids have been great.  I just realized that I probably am incapable of traveling solo anymore.

Wow.  Not be independent and travel solo?!  I am so happy to have been able to do just that so often, and know that the ability was something I held dear.  Like many things, it is no more.  Still, it would have happened at some point in my life.

Is this it?

I ask, because I had enough trouble driving today that I felt like driving might be beyond me soon.  It's a tired day, so maybe that's influencing how I feel.  Still, I don't want to wreck before I turn in my keys.  I want to make the decision prior to that.

Ponderings

Update on JR14: unanimously passed the full Senate.  Now for the House...

A person with ALS has been compared to a candle melting as the flame burns.  That seems apt, as the light goes out at the end of a life, just as a candle sputters and dies.  I was envisioning myself as a house, brightly lit, with the lights being turned off one by one. One light is walking, another using my hands,  or being able to roll over in bed.  Lights have gone out in many ways, but just as one can still function in a darkened house, I can still do so many things.

Work brings me joy, but getting there presents challenges.  Today I simply do not have the physical or mental energy to pull myself through showering and dressing.  Putting on underwear or socks can take 15 minutes for each, plus the time for the remainder of dressing.  The idea of that is pretty daunting.  I am thankful that I have an understanding supervisor in John.

I have not wanted to let ALS stop me from going to work, because the slope is way too slippery, and if go down it, I most likely will not come back up. I am not ready to call it quits yet!

Each day is joyful, and always will be, because of my family, the Earth, and my friends.  Still, I want this blog to speak for me, and help people understand the challenges of dealing with ALS.

Lower and slower, but still moving!

Today we head to Helena to testify on  Senate resolution to support Federal government funding of ALS research, among other things.  A mere three-hour road trip to the capital city, then three more back again.  Still, one thing I still have is a voice, and I need to use it when necessary to evoke action.

It's a blustery day.  Gotta get going...a shower and dressing takes an hour when I am moving well!  Sheez.  Patience was never my strong suit.

It's evening now and we're at the Celtic Cowboy in Great Falls.  Testified.  I will copy the text below. The Senate committee unanimously passed the resolution.  Now it goes to the Senate floor for two readings.  Transmittal is this Friday; if the Senate passes it, the resolution goes to the House for the same treatment.

The chairman of the committee, a Republican, has a son who has ALS.  He was diagnosed at 24, and has had it 2-1/2 years.  My heart breaks when I hear of young people with this disease.  I don't bemoan my condition, but we have to find a treatment or cure for these young people with ALS.

ALS Testimony

  Thank you for considering this joint resolution.  ALS is a devastating disease: physically, emotionally, and financially. We personally are fortunate to have the ability to withstand the emotional and financial toll, because of the strength of our family and network of friends and very good insurance, but there is nothing currently available to change the ultimate progression of the disease. Other PALS have far less resources to deal with ALS.  No treatment.  No cure.  As you heard and read, the vast majority of PALS die within 2-5 years of diagnosis.  I am at 18 months, and my goal is to live to see our 14- year old daughter graduate from high school in 2018, but I am betting against the odds. 

ALS has no known cause.  The bitter irony of this disease is that most often it strikes active, otherwise healthy, even athletic people,  

While I still have a voice--literally, a voice--I need to express support for this resolution.  In Havre alone at least two community leaders have died from ALS, and four currently are affected by it to varying degrees of progression. By establishing May 2015 as ALS Awareness Month in Montana, you will help bring this disease into the light.  Your call to the federal government to fund research into finding a cause, securing treatment, and ultimately, hopefully, a cure will speak for the many Montanans with ALS.  I likely will not live to see treatment or a cure, or reap any benefit from them, but we need to strive forward.

Please pass this resolution out of committee and send it the Senate floor.

Thank you.

Still me, but different

We watched "You're Not You" last night.  Interesting, funny, sad.  Like life with ALS is for everyone who has it or cares about someone with it.

I don't have a lot to say.  Still working, still talking, still able to write longhand a bit.  Not able to see this continuing for years though.  While I can breathe with no trouble, losing my arms will be a very significant point.  I imagine I will adjust to it as I have to everything else, but it seems like it will be one of the harder things to accept.

Still, I value each day, and getting outside even in the winter is a treat.  Caroline and I walked/rolled to a celebration of life for a wonderful woman on a beautiful warm January Saturday.  She had been in a wheelchair since whe was 17, but always was a bright, smiling inspiration.  She married and raised a beautiful family before being diagnosed with breast cancer and passing at 51.  I can look to her shining example of how to take the life you're given and make it wonderful.

Upon awakening

Each morning when I awake, I have the happy ability to see the sky behind me by accident.  We installed an electric fireplace, which has a very reflective face. So I see the sky and a tree from bed, even though the window is behind me.  Cool!

Better, though, is the gift Dolan gave me for Christmas. He actually commissioned a local artist to create a work with bear grass and me in mind.   This is the result, and I see it from bed also.   Funnily, I saw it immediately by the tree, and thought Paul bought it for Dolan.  I actually said to Dolan that he wasn't very observant about his gifts, and he said, "No, Mom, you aren't observant.  The art is your present from me!"