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.
Wednesday, January 28, 2015
Friday, January 2, 2015
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!"
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!"
Wednesday, December 31, 2014
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.
Wednesday, December 10, 2014
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.
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!
Wednesday, October 15, 2014
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.
Thursday, September 18, 2014
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.
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.
Sunday, August 24, 2014
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.
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.
Wednesday, August 20, 2014
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.
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.
Monday, August 11, 2014
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.
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.
Thursday, July 31, 2014
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.
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.
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