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.

Wow.

What can we PALS say when suddenly our hidden disease gets viral attention on Facebook and elsewhere?  Thank you to everyone who has participated in and/or donated to ALS-related causes.  At last count, the ALSA has received $31.5 million to support its research and especially care for ALS patients (PALS).

So many people have taken the challenge (#alsicebucketchallenge) and so many have contributed.  I hope more people understand the disease now, too.

I read about another person in Havre with ALS, a man perhaps my age (?).  That makes 3 of us in a city of less than 10,000 people.  Weird.  Only 30K people in the US are diagnosed each year.  We seem to have a preponderance of cases here.

Well, we keep moving forward, as the alternative is not acceptable.  I am still working for the time being, and looking forward to the students returning to MSU-Northern next week. Hopefully my Dolan will be one of them!

We will be participating in the Missoula Walk to Defeat and here is my link:

Team Pam's PALS

We are doing well fundraising for this good cause, and hope it will exceed its goal!  We just attended a Practical Solutions Workshop put on by the ALSA Evergreen Chapter (which covers Montana, Washington, Idaho...), and got good info and contacts.  That's part of what funds raised will cover (PALS support efforts), as well as research into this mysterious, devastating disease.

As summer slides to a close, I hope we all appreciate every single day we are given.  It is a beautiful world.

Reflections

All over Facebook today is the story of Robin Williams' suicide.  It is sad that he had such brilliant humor for display, but suffered such pain inside.  Yet, I can also be frustrated when people take their lives, or live dangerously, when I have ALS through no action (that I know of) of my own.  Cirrhosis, maybe, or sugar overload, but ALS?

Yet death is overwhelmingly present in our 24/7 news and information cycle.  I have the blessing of knowing what is likely to happen, and appreciating the life I still have to live.  Equally, I have to have some humility of spirit, given the challenges that face so very many people.  Spiritual and mental challenges such as those that bedeviled Robin Williams are perhaps even more painful than the physical ones we face.

One Year Today

I was officially diagnosed one year ago today in the Rochester, MN, Mayo Clinic.  I say "officially" as we were relatively certain earlier in the year based on my symptoms.

I'm not celebrating this anniversary, but I am indeed celebratory about being here a year later, walking (with braces and canes, but walking!), able to do most things for myself still, and unaffected in my breathing or swallowing or talking.  That is good!

I made it down the deck stairs to the yard today and supervised Caroline doing some long-neglected garden work.  It's 93 degrees, so she felt a bit oppressed as I sat sometimes in sun, then in shade, and pointed out what she needed to do.  I can honestly tell her it would be done by me if I were able.  I miss gardening, piano, running...but that's a downhill thinking pattern!

We had a lovely time in Anaconda, celebrating 25 years married and my 54th birthday.  Lots of family and my dear friends Julie and Mike and Wendy from Helena shared our happiness.  Life is so very good.

Relentless

Truly ALS is a relentless foe.  Each day things (body parts) feel a little weaker, a tad more achy, and I am more unsteady.  Tired of looking at my feet turn purple when I sit too long.

Dolan and I fly tomorrow to Billings to see a doctor about more leg braces.  Paul is in Bozeman, Caroline in Helena.  Thought we'd cover another major city!  Billings Clinic has an MDA/ALS clinic, so hopefully I will attend that also.  I am not wedded to the idea of being a constant patient, but I know they can help me some.

I looked at old photo albums today.  I have had such a good life, filled with family, friends, love, travel.  How can I possibly feel sorry for myself?  I just want my passing to be easy on my loved ones.

Merrily we roll along...

Walked up my ramp with my walker yesterday evening!  While not completely finished, I can access my house without the split-level stairway.  That is a good thing.

Especially as things are progressing steadily.  Funny, to use the word "progress" when it means such a dreadful thing.  It's even difficult typing with my right hand.  My ring finger is pretty useless, at least for me to confidently type.  No great coordination between the right hand fingers.

Suggested "Until I Say Goodbye" to my book club, and they gamely agreed.  I said it was my role to spread awareness of ALS!  I hope they enjoy it, and it gives them more information about ALS.  It's sad that the author has passed, but I know from FB posts that she lived a life of joy right up to the end.

The 4th of July is tomorrow: lots of plans for the Park, a friend's house, Shakespeare in the Park, and fireworks.  This year I won't go barefoot (and get a burn on my sole)--one benefit of a brace!  I have to wear shoes.

Trying to get into an MDA/ALS clinic in Montana.  Really not sure that I will get a lot out of it, but I do need to be fitted for another or an expanded brace (and one for my left leg, too).  I am not a fan of the medical community.  I haven't had a bad experience; I just don't like committing myself to others' care.  Bad patient!  Good thing I have a disease they can't really treat.  I'd be a very recalcitrant cancer patient.

Hot days in Havre, but the shade is bearable.  It really is a wonderful world.

Ramping up my expectations

Today was an up and down day...decided to try playing the piano, and as expected, my right hand is not very adept at the melody.  Muscle memory is only in my brain now...if that is possible.  Isn't it in your muscle?  Alas, muscles are not my strong point these days.

Then I decided the sheets just had to be hung out on the line to dry.  I knew I couldn't carry the basket out, so Caroline did, and then I realized that of course I cannot stand and hang things on the line.  I can't even push the clothespin open.  I loved hanging out clothes, and singing to myself while I did.  Still, the sheets smell like outdoors, which is the main thing, regardless of who hangs them out.

I have letters to write, but even writing checks is hard now.  Correspondence should be hand-written.  I have been going through old letters from friends (I have saved almost every one since 1975!), and I am reminded how the art of correspondence is being lost with the advance of technology.  Think of the letters of the past which have given us insight into the lives lived then; we will have none of that with texts and twitter or even to some extent emails.  As a student of history, that disturbs me.

As for the ramp?  This should be the week I roll up to my new entrance.  Well, we have two work days left, so I best not get too excited...

Father's Day Thoughts

Happy Father's Day to all fathers out there who take responsibility and care for and love children.  There is no more important job.  To the two fathers closest to me, Dad and my husband Paul (both Pauls!), thank you Dad for all you did to make us the people we are, and thank you Paul for being such a loving father to Dolan and Caroline.

Paul and the kids in Beaver Creek Park 2012

Dad in DC in the late 1970's

Can I cry a little today?

Okay, I try to be strong about this, but I sat down to play the piano, and although I can still type with my right hand (as I am doing right now!), I cannot manipulate the piano keys smoothly with my right hand.  That pains me more than I can describe here.  Piano has always been my meditation and solace, and to lose that makes me sadder than anything so far.

I need to just blink the tears away.  Crying solves nothing.

Focusing on the joy still in my life:

We met Carole King at a fundraiser on May 1 in Bozeman for the Senate candidate I support (Dirk Adams).  Paul very kindly drove me down, which is a 4-1/2 drive from Havre!  Thanks, Paul.  He also asked her to take a posed picture with me, and she graciously agreed.  She is a marvel, and can still rock a piano and belt out her songs.

Also, our remodeling is all but finished (on the inside...deck and ramp yet to begin).  We returned to our own bed (with an addition of a mechanical lift "boxspring"!) on May 8th.  Paul and I were SO happy to be back in our own bed, as were the kids (in their own beds).  The room is peaceful, soft green walls with speckled brown carpet and windows letting in lots of light.  And I love the new bidet toilet!  We've thought of charging people admission to use it, the experience is quite worth it! :)

Spring is finally coming to northcentral Montana, and some of the flowering trees are in their full glory.  My daffodils did great this year, and now the tulips are blooming.  How can anyone be sad in the presence of natural beauty in the spring?

Sleepy time now, that is something I have to respect more.  My body definitely tells me when it's time to rest these days.

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.

An Environmentalist's Dilemma

Hearing the contractors ripping away the walls and wiring and carpet and closet shelves and everything else that stands in the way of a more accessible home, I am saddened by the perfectly good things (for us) that will be in the landfill.  The carpet was old, but in good shape.  The walls were painted a lovely sage in the bedroom and a mixed brown (it really looked good!) in the office.  All that is now in the dumpster. 

If ALS weren't already a pain in the neck, this is adding insult to injury.  Sorry, Earth. 

Remodeling Commences Tomorrow Morning...

We are remodeling our bedroom and adding an accessible bathroom starting tomorrow.  We hope to make it as accessible as possible without making this home feel like a hospital ward.  We may have to hurry on the deck/ramp, though, as I am having increasing difficulty with stairs.  Even walking any distance is pretty difficult.

As we binge-watched House of Cards today, I stared at my toes, and tried to wiggle them.  Whereas my right has been problematic for a while, tonight my left started to be unresponsive.  How weird, for my mind to be thinking "wiggle," and my toes to be just not doing it.  Something new every day. 

Moving things to the kids' rooms (the sleeping arrangements will leave a lot to be desired on everyone's part), the den, and other locations in order to have nothing in the soon-to-be remodeled area really challenges me to assess for  what exactly I am saving so very much STUFF. 

I have letters from the 1970's 'til now, photographs beyond my desire to count, and framed art we don't have wall space to hang.  I can take none of it with me, and may (will) come to the point I can't even hold it in my hands, so shouldn't I go through it all now when I can touch it, read it, view it, etc., and then discard or burn it?

Well, we will see how well I do.  In the meantime, please enjoy the beautiful arrangement Paul gave me for Valentine's Day.  He's so romantic: they were in the hotel room at the Grand Union in Ft. Benton awaiting our arrival.  The room overlooked the Missouri River, so that's the picture I took.   The Missouri is frozen in this photo, but it was pretty enough the next day to take a walk on the river without jackets.  I love Paul, and I love Montana!

 

 

Winter in the Blood and in the air...

We were fortunate to see a Montana-made movie, Winter in the Blood, yesterday, and meet the directors and one cast member (Moses!  well done!) at a reception.  Thank you to the hosts!

Winter in the Blood is a tough movie to see.  The pain the main character deals with is far beyond anything I can imagine living with, even with a difficult diagnosis.  The fortunate life I have had the luck to live is so far removed from First Raised's life. 

Anyone who has the opportunity to see Andrew and Alex Smith's movie should do so.  We may be able to disavow the legacy of disgrace that our country left us in their treatment of our native peoples, but we cannot turn our backs on the pain that so many live with today.  This movie brings that pain into sharp focus.

What a luxury to be able to look beyond my own condition to the situation others are or have been dealing with, and feel better as a result.  Perspective, perspective, perspective.

Worth it!

Tried to run to catch the sunset on camera just now.  Running is a funny activity when one leg absolutely rebels.  But this is what I caught, and it was worth finding out yet again that running is not an option for me.

So very worth it!

I am reading a book recommended by Caroline: The Fault in Our Stars by John Green.  I am only half way through, but I can guess I will cry more than the two times I have already.  Tears come for the parents, for the people who have loved ones with fatal diseases.  I am finding it relatively easy to face ALS myself, so far anyway, but hope my attitude can help others accept it, too.

Dang, don't I sound noble?!

If you want more of my incredible nobility (akin to whistling past the graveyard, really), try reading what I wrote for our local paper, the Havre Daily News:

 http://www.havredailynews.com/story/2014/01/20/opinion/als-makes-you-appreicate-what-you-have/201888.html

A lot of people have been very, very kind to me, and while I hope to send thank you notes to all of them, I also want to get higher in Candy Crush.  (Oh my, did I really say that?!)  Too much to do, too little time!  I will get to the notes and away from the addicting games, I promise!

New challenges

I'm doing well, and am still enjoying every day, but balance is becoming an issue.  Man, do I hate that!  I always prided myself on my balance (physical, not mental!).  Reiterating an earlier post: pride goeth before a fall.  I've fallen on the ice and fallen while shutting a door -- two days in a row.  Both times in front of people. Dang.  It's very frustrating...I want to just lie there and recoup my equilibrium (the mental kind).

That doesn't make me terribly unhappy, though.  I just have to realize that it's a natural progression of my condition, and adjust my movements accordingly.

Spent time with Dolan's attorney discussing his trial today.  Law is pretty interesting.  When I went to college my intent was to become a lawyer and work in D.C.  That seems a lifetime ago.  Yet as we discuss legal tactics, I am fascinated all over again.

I'm also intrigued by counseling.  Is it too late to start another career?!  That is the one beauty of ALS: eventually all I will do is read and think constantly.  Can you imagine, though, my not being able to talk about what I am learning?!  Here comes electronic voice simulation!