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!"

First Night Pending

It's New Year's Eve.  Seventeen months since I was diagnosed.  I am still going to work, happily.  If nothing else stands as testimony to the value of education, the fact that I can still do my work from a wheelchair should be proof enough that higher education is important.  So get an education!!

So much for my brief commercial message for MSU-Northern. 😉

I do realize that the reality of retirement due to disability is pending, if only because getting to work in my van by myself may be difficult.  Using the accelerator and brake takes a lot of concentration and energy (and at times, my right hand to lift my right leg).  In the spring, I can probably drive my fancy pants new wheelchair itself to work, but not so much now when it's snowy and 10 below!

Christmas was lovely and quiet,  with the nuclear family together and happy.  We had dinner at my very cool 84 year old friend's house, then a quiet evening after.  Although Dolan was disappointed that we didn't go to Whitefish for Christmas break, my need for accessibility overrode his desire to ski.  He was cool about it, though.  More disappointed that he didn't win the Montana Millionaire lottery after buying lots of chances!

Yesterday, I got an email about a woman with ALS whose blog I had followed.  She passed on the 23rd.   She was 9 years younger than me.  Although I am well aware that the likelihood of death is great in these ALS bloggers, it still gives me pause when one does pass on. As I suppose it will when I too leave.  

In the meantime, though, I will just continue to enjoy the life I am fortunate to have, and as we remarked on Christmas Day, we are truly blessed.  I have been given a great gift, and I intend to make the most of it.

Decking the halls

Christmas is just around the corner, and we are behind on decorating.  That was always something I did, and it's a difficult transition for the family.  Still, Dolan said he'd do the outside lights today, and Caroline decorated inside a bit.  Paul gets to do the tree! So hard to accept that I can't do any of it now.

Monday morning my serious wheelchair is due to be delivered.  Thank you, MUS BC/BS!  I am ready to move to it largely because my ankles really don't do well in the Jazzy all day at work and social events.  The new chair will allow me to raise my legs now and then.  Wahoo!!

Still enjoying working with students to help them succeed.  Attended the reception for December graduates yesterday.  One grad mentioned that he was the first person in his family ever to get a college degree.  That brought tears to my eyes: this is what our university us all about.  Actually changing the socioeconomic status of many of our students from low to middle class.  Despite the challenges the middle class faces, we are the backbone of the United States, and the more people who can be brought into this class, the stronger our country will be.

As for me, I can still stand up, although I need constant support (a wall, grab bars, a counter, a human to hold on to).  I am glad I can still be vertical!  My legs will support my weight a bit longer.

As the year winds down, I am still so very thankful for all I have, and feel blessed.  I have the opportunity to know pretty much what will happen to me, and have made my peace with it.  At this point, I want no tubes, feeding or otherwise.  I want to go naturally as much as possible.  Holding on to life with artificial means is repellent to me.

I hope you have a wonderful holiday season, and that you count all your blessings often.  Merry Christmas!

It's the little things...

Havre Elementary PTO was part of my life for ten years.  I still save boxtops, labels, pop tops for the schools.  But that needs to stop, as it takes so much effort.  And delivery is problematic.  Worst of all, I was not working at the Lincoln-McKinley Scholastic Book Fair!!  I have done that for so very long.  Sigh.

September Mornings in Havre

For the last 13 years, the early morning September sky has been filled with music from the Havre High School marching band.  First come the drumbeats, then the horns and winds play.  I always smiled to hear it, even if it was from 7-8 a.m.!

This year, Caroline is participating as a freshman clarinetist.  She is so enjoying being part of the marching band, despite having to rise at 6.  I have a enhanced appreciation of the band's music wafting up from the practice field.  I am so thankful for her interest in music!  That is something I can enjoy until the very end.

Everything otherwise is going well.  I am in a "play;" actually, more of a set of spoken roles.  Called "Seven," it puts voices to seven incredible women activists from different countries: Ireland, Guatemala, Cambodia, Pakistan, Russia, Afghanistan, and Nigeria.  I am voicing Anabella de Leon, a Guatemalan congresswoman.

This will likely be my last (best) role: I was playing "Granny" in "On Borrowed Time," but access to the theatre was only by stairs, and those are too exhausting to me.  Added to that the nine performances starting at 8 p.m., and it just wasn't feasible to continue.  That was a very hard decision, but like many decisions, once made, everything seemed smoother in my life.

We are going to purchase a used Windstar adapted van. (Thank you Pat and Jerry for the assistance!)  I NEVER wanted to drive a van; I am not a van person.  So ALS has opened yet another aspect of the world to me.  The importance of the van cannot be understated; it will allow me to continue working for much longer.  I can't envision leaving my students and co-workers yet.  I know that day will come, but I am going to put it off as long as possible.

I can't end without commenting on a video that was recommended on a ALS blog I follow.  It was an ad from the Motor Neurone Disease association in England.  It was disturbing. Not because it was offensive in the violence of the depiction of the onset of ALS.  I just don't want to see the disease I have depicted as such a gruesome thing.  Call me the Queen of Denial, but I don't feel oppressed or victimized by ALS, and I am repelled by depictions of it that imply oppression or victimhood.  It is what it is; I have ALS, others have mental illnesses, cancer, MS, Parkinsons...it is how we approach what we have that makes the difference in our lives.

So as I motor off in my Jazzy to take a shower, please remember that I do not feel sorry for myself, so please do not feel sorry for me.  ALS really has opened my eyes.

Holey moley!

Paul just said the ice bucket challenge seems like another part of his life he needs to manage, and he's right on the mark!  The response to this attempt (and success!) at raising awareness and money for ALS support is overwhelmingly astoundingly fantastically wonderful!!  At latest count, the ALS Association has received --get this--$70.2 MILLION as of today!!  That's just through the ice bucket challenge...there's also the ongoing Walk(s) to Defeat ALS, which we are participating in on October 4th in Missoula (see earlier post). And that does not include donations to other ALS organizations such as ALSTDI.

Amazing.  Awesome.  Inspiring.

People just needed to know this disease exists, and then their hearts and wallets opened to PALS.  Adding the element of a fun activity that one can do in one's front yard, and be as creative as one can be, has only made it that much better.  A person can truly become involved directly and become part of a movement.

I am so glad Peter Frakes used this idea for ALS awareness, and I wish him all the best as he and his wife welcome their first child.