The Two-faced God, Janus

December 31st. Staying up til midnight was such a thrill when we were young, but as we age and stay up late for so many reasons, it seems contrived to stay up for one specific night. So here I am in bed at 11:19, but likely I will be awake at midnight regardless. Will I see the entry of another new year?

Worked for pay for the last time today, even though everyone else had already gone home. I had to clean out my things in any event, and send a last email as a means of exerting control past my retirement. Similar to wanting to plan my funeral details; exerting control from the grave!

So 2016 will dawn, and I will enter a fourth year of ALS. If I can hold on another 2-1/2 years I will see Caroline graduate. Much will be discovered at the ALS clinic a week from today. If my breathing isn't too compromised, perhaps I can make it to 2018. It doesn't really seem so far away when I think of it, but if I consider how I have deteriorated over this past year, and project ahead, then it doesn't seem like I'll make it through this coming year without resorting to invasive medical help.

Life is good, though. My brother and his family came to visit from California the last two days. (Who leaves California in late December to visit north central Montana?) we enjoyed chatting and had a great evening that stretched past midnight yesterday playing games. I really value the family I was born into, and the legacy of love and support our parents left us.

A joyful Christmas!

I am so fortunate to love and be loved.

Worked a couple of hours with Nuni and John at MSUN, I am going to miss being there so very much. John's wife has cancer, and is spending Christmas at Benefis hospital. My heart goes out to their whole family. Nuni, John, Amber and I are like a little family. The love and caring is always evident, and emanates from our wonderful leader John.

We had a quiet Christmas Eve, with a lovely Mass at 5, seeing many of our parish and city friends, the watched It's a Wonderful Life and Paul created a delicious feta shrimp over rice dinner. Dolan and Caroline were here with us, and Caroline and Paul made the overnight casserole. Then this morning we slept in til 10. Our gift opening focused on each individual opening their gift, which allows us all to enjoy each other's surprise and pleasure. Then a late brunch with mimosas, and stockings, with our favorite scratch tickets and Montana-themed cookie cutters.

Our lovely tree and bounty of gifts!

I had a bit of a meltdown last night because I was up too late (11:30 pm; out of bed since 9:30 am). Poor Paul; tough for the evening to end on a crying note. Once in bed, though, things settled down. I just have to face that I need much more horizontal time now.

If I see no other Christmas, I can remember this beautiful day. I leave you with a picture of Havre's Town Square Christmas tree.

Merry Christmas Eve!

Hoarfrost covers everything this beautiful Christmas Eve, my favorite day of the holiday season. Anticipation, one of the enlivening emotions!

We are sending out Christmas cards this year, but for the first time with printed messages and address labels. I always prided myself on personalizing each message to friends and family, but that is just beyond my ability now, even through typing. I can barely put the label on, or the card in the envelope. So I decided my blog entry today will be my Christmas message.

Our front yard tree dressed for Christmas!

Facebook means many people have followed our busy lives this past year, so I won't revisit the things we did. Suffice to say that we are doing as much as we can, and Paul and Dolan and Caroline are sharing this interesting journey with me while providing me with love, support, and most importantly, humor.

I am blessed. My family and my friends and my community give me strength to move forward. I wish all of you the happiest of Christmases and a peaceful and fulfilling New Year.

Christmastime is here...🎧

Christmas will be come and gone in less than a week. Advent is always thus: The waiting and anticipation soon gives way to the post-Christmas lull. But in the lull there is some peace. You can look back and remember the warmth of the season and the joy you shared with family and friends.

There I am, looking ahead again. I can see some corollaries with my condition. I do sometimes wait and anticipate what will eventually happen, but I hope the aftermath can be what I described above: Remembrance of good things past.

Today we slept in til 8:30 (that's sleeping in to us!), then had a nice hour or so reading the paper, Facebooking, and having #bestcoffeeever (Paul does make a fine cup of coffee for me!). Now Paul is doing the once-monthly recycling. I am envious; that was a truly favorite activity of mine for my entire active life. Really. I liked helping my dad with stacking newspapers for the Boy Scouts' paper drives back in Springfield, Virginia, in the late 60's. And I last took recycling when I was limping but still able to lift independently. Recycling is a big deal to me, as any who have had me annoy them about a tossed recyclable can attest! Still, like so many things, I cannot do that now. I am unable to adequately thank Paul for doing this in my stead. Although sometimes I think what small impact our household recycling has when I see garbage cans on our street bulging with recyclable materials, at the same time I know we have to be the change we seek.

I have been working this week, more hours than sick leave for the first week in a while. I want to be there, I have important work. We are assessing the transcripts of our student members, and looking at where we can help or celebrate their achievement. At the same time, I have chosen officially my last day: January 1st. I will start the new year filing for disability.

Disability. Official recognition from the Feds that I am unable to work. How can I keep going without that push to get out of bed and contribute my knowledge and spirit to the educational milieu? I have plenty of things to occupy me at home, but those things don't contribute to the greater good. I won't even have city council after Monday night, as the newly-elected will be sworn in, and I will leave my seat. (Well, figuratively, of course. I only leave my literal seat for transfers to bed or shower!) Still, I can't even voice an issue easily in council anymore. I had to have my fellow ward rep speak for me at the last meeting. Those who know me know I don't easily let ANYone speak for me!

Have a very merry Christmas! I will likely write again before next Friday, but I love saying Merry Christmas!

Clarity

As my health becomes more compromised, I am trying to find clarity as I approach the end. I read about death so as to understand it better. I think about each thing I touch, assessing its immediate value and trying to determine if it will have value to others when I'm gone. I let my thoughts wander to the tidying up of the house post-Pam: the removal of all this medical paraphenalia, the selling of the van. I can feel the desire to control beneath the desire for clarity.

What is clarity to me? I think it's recognizing what lies ahead and facing it clear-eyed. Realizing (while not always acting on) what's truly important, which at the end is always only the relationships one has forged in life. I was reminded of this the other day when I was guest of honor at a luncheon and the dedication of a tree and plaque at the Boys and Girls Club of the Hi-Line. To know a tree will grow strong and tall and shade children for many years to come is the greatest gift I could ever receive. Receiving it before I depart is even more special. As I always say, ALS is giving me the opportunity to see all the love that is out there!

I have the ability to focus on these things because I am fortunately not worried about finances. We are blessed with good insurance, good jobs, good savings, and family and friends who take care of us.

I have submitted my resignation at MSUN, effective January 4, 2016. Then I start the process of getting disability determination from social security, Medicare, and hospice. I can access my retirement too, even before 57-1/2. Not that I am so far from that age anyway!

Fortunately, ALS is a disease wherein you can remain at home til the end, as far as I know. I have my beautiful room. I can't bear the thought of a hospital or nursing home death scene. Here, I am surrounded by art, music, color, and light.

Alpenglow

We get a bit of Alpenglow on the high plains, with the Bears Paw mountains to the south. We are fortunate to have them in view from a picture window. This definitely helps me face being in the house on cold winter days. I close my eyes and remember how I would go for long, leg-stretching walks on days such as these: clear, sunny, cold. ALS will never take my memories.

Thanksgiving is over. We will start decorating this week for Christmas. Then come Caroline's concerts: choir and band, and Piano and Pipes next Sunday. Advent is always my favorite part of the Christmas season; the sense of expectation and anticipation are so invigorating. I am already happily listening to holiday songs. 

I look to the future sometimes, even if I may not see it. Caroline's theater and music figure prominently. I am happy she is so involved for both her happiness and also as it gives me set points to aim for and to experience. I've had a great life and am not bitter about it ending, but I dearly want to see Caroline graduate and perhaps start college. Am I willing to have a trach tube to do that? I would have adamantly  said no, but after reading a PALS' website about how he lives well with a tube and it isn't a huge caregiver burden, I am rethinking my out of hand rejection. So I hold on, and hope to travel to DC next July to see the Blue Pony Marching Band in the  national July 4th parade.

Thanksgiving Day

Thanksgiving Day dawned sunny and bright, but a tad cold (-1).  My sister Pat and her family are in Duck, NC, in 67 degree weather. 68 degree difference. Gotta love Montana, although snow and cold are hard on mobility-impaired folks.

I've texted and talked to two of my bothers, face timed one sister. That leaves two to go. Talking is hard, though.  I am so thankful for texting, and even FaceTime allows me to see everyone and let them entertain me and know I'm listening. Talking with my brother Mike was a blessing, though, as he was in a serious motorcycle accident in October. He has memory deficits, and somewhat garbled speech, but is improving daily, thank God.

Facebook also allows communication with family and friends. I certainly am glad if I have to have ALS, I have it during a time of great communication devices.

We are spending Thanksgiving with our adopted mother/grandmother, Margaret. She's 85, but will be doing the cooking (we supplied the turkey and pies). She had a great ramp installed at her home to insure I could still visit, but I am glad it is also a benefit for her and her friends. I am glad we are spending Thanksgiving with her, as I have always believed that Thanksgiving is meant to be spent with others as well as with family. Thanksgiving is a time to rejoice in our connections with others.

We had snow yesterday. Not much, but it's so beautiful to see. I can't imagine living in a place that doesn't get snow. All the seasons are my favorites for different reasons. Actually, how can one have a favorite season or color? There is too much beauty in everything to pick favorites.

Driving to Bozeman last week

Each holiday has to be relished as though it is the last. Everyone should do this, although perhaps its most important for me to do so, as I suspect I won't be here next Thanksgiving unless I opt for invasive measures to keep myself alive. I am still not willing to do that. I am eligible for hospice, however, and that seems preferable. I don't want to drag this out. I love life, but on my terms, and Nature's terms, not on invasive medical technology's terms. Fortunately, I have my family's support in this understanding of my end.

So, on this Thanksgiving there is so much to be thankful for each and every day, but especially today: family, friends, communication technology, insurance, a great boss and coworkers, Amazon Echo, Facebook even! God gave me many blessings from birth on, and I am deeply thankful for each, and feel well-treated.

Happy Thanksgiving, dear readers!

Thinking ahead

In my chair early today, although not out of my pajamas yet. Awaiting the arrival of Bear Paw Hospice nurses for my assessment. I wonder what they assess? If they ask me, I would say I have less than a year to go, given my progression.

My voice is very compromised, especially when I am upset or anxious. Last night at city council when I brought up the failed mill levy to put on the ballot again next November, it sounded like I was crying because my throat chokes up. While the mill levy vote might make me sad/mad, it doesn't make me cry! Dang. Losing my ability to strongly argue my position is perhaps the worst thing about this disease.

Being a burden is worse. Needing range of motion PT, and no longer being able to perform it myself, leaves me needing a family member to do it for me. I have to ask every time, and it is grudgingly done. How can I ask this of them? They do so much for me already, things that I would never want done for me if I could do them myself. I want to live, but I want to stop being a burden, too, and that means dying.

So, hospice, welcome to my situation.

I promised to see the joy. There is good still. At work yesterday I successfully obtained a new tutor for a student with help from another tutor. Knowing I can still do my job, and help students, gives me great satisfaction, even if I sound like I've been drinking when I talk to students. Thank goodness for texting!

Also, I enjoyed city council and the following discussion with the Local Government study commission and five fellow council members. We responded to their questions about how we would improve communication and other city issues. I think it says something positive when the council members agreed on most items. Things that are good for the city are pretty obvious.

We are having very nice November weather. Still time to put the garden to bed, if someone will do it. Another thing that I would dearly love and prefer to do myself. I am learning to let go, but it is so hard sometimes.

A month of being thankful

November reminds me to be thankful. It was easy to be so when the first day was so beautiful. Havre was warm and clear, a bit windy but both Caroline and Dolan worked in my garden as Paul put things away and I sat on the deck. We laughed a lot, especially when I said it was so nice us all working together and the three of them looked at me and snorted. Hey, every job needs a supervisor!!

I can be thankful today for all the moisture we received, but I am also terribly frustrated with 57% of Havre's voters who turned down City Council's infrastructure mill levy proposal. 918 people with vision stymied by 1,199 people who refuse to put skin in the game to replace crumbling infrastructure . Our country was built by people willing to think of the next generations; where has that ethic gone?

That was my goal in this last year on city council: to leave Havre with a plan for infrastructure improvement. I will not be on the council after January 2, but I certainly hope this goes back on the ballot next November. We cannot turn our backs on this problem and hope it goes away.

Funny, I won't live to see the improvements, but knowing they could have happened was enough to make me happy. I'll just have to settle for my legacy being children and trees. That's pretty good, after all. 😊

Paul took the Jazzy to Great Falls to sell it. One less thing in the garage. Dolan and I were going through things there, and he and I disagreed over saving things such as his class ring and geography bee t-shirts and medals. I was all about keeping them, he was all about getting rid of them. He did want to save books. I am such a saver, and yet as my time here grows short, I really have to wonder why. Who wants years of correspondence from family and friends that I've saved? Dolan has a healthier approach.

“Why the obsession with worldly possessions ? When it's your time to go, they have to stay behind, so pack light.” 
― Alex Morritt, Impromptu Scribe

I was looking for a quote I thought I'd read years ago; something like "happy is he who can carry his possessions on his shoulders" which always guided my thoughts (but not my actions). For once, Google failed me, but I found the even better quote above.

So here I lie, unable to answer the landline or turn off the endlessly beeping alarm. Being paralyzed is annoying!

Winding down

Autumn is a time of winding down, as the garden flowers put on their last show before the frost takes them, and the leaves turn color and drop. Snow has fallen already, but soon we will see snow cover the ground.

As the fall progresses, I too feel a winding down of my life. I have to face that work may no longer be feasible. I always thought and said that as long as I could talk and type I could still work. Talking is very hard now and typing grows more and more difficult. I told John yesterday that I believed that October 30 would be my last day at work. He said that we could remain flexible which I very much appreciate. Still I believe that I need to set an end date. Otherwise, I will not be able to say goodbye. I will keep thinking that I could still do it: work with students and others. Unfortunately, my contributions are becoming less and less.

It doesn't help that I'm not feeling well. I had my operation for a suprapubic catheter. I thought that would solve most of my pain associated with the other catheter, but the pain continues. I used to think I was so strong! The pain takes me down, though, and using painkillers makes me uncomfortable. That, and a tendency to choke on air or my own saliva makes me want to give up. Not so brave and strong, am I?

I also spend time thinking about the value of my life when I cease to be able to contribute to society. Also, when does the burden my care puts on my loved ones become more onerous than dealing with the grief of losing me? They can't avoid the latter, but I can shorten the length of the former.

Those are thoughts I can control, so I am still joy filled. I got to see Caroline perform with her choir groups last night, along with the rest, and they were wonderful. I am enjoying the extended lovely fall weather, and love that the garden is still vibrant. I have the love of my family and friends supporting me. I can't wallow for long.

Catching up

Rainy autumn weekend in north-central Montana. Missed Havre High School homecoming parade and game (to see Caroline play in the marching band). Instead, Paul and I were in Great Falls at Benefis for the suprapubic catheter operation. Great results, but coming out of the anesthesia was difficult. Then, getting a prescription filled for a painkiller was a pain, pun intended. It finally ended with the surgeon meeting Paul in the parking lot of Walgreens to write a new prescription. Kind of like a drug deal!

So, whereas we thought we'd make it back for the game at least, we failed. Still, it rained the whole day in Havre, and my powerchair is not water-friendly, so it all worked out. Especially since a band parent posted the half-time performance on Facebook. Now I can see it over and over, bone dry!

My brother Mike was in a motorcycle wreck last Saturday and is still in the hospital. Life can change in a few seconds; in some ways, I have been blessed with the time to prepare. I believe Mike will recover and be okay. If I think about those killed in Oregon, they had no warning, no chance to prepare. Life seems so cheap, when I see so many the world over lose their lives so randomly and abruptly.

Joy stays, however. I have a loving family, I appreciate all the weather we are given, I have a wonderful support network of women bringing dinners once a week. And getting rid of my internal catheter for an external one is terrific. Simple pleasures, simply enjoyed.

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.

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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!"