What we know... or don't know.

On Thursday, Jon and I were able to attend a research forum on ALS with some top ALS researchers from around the country. The format was loose - all question and answer - but interesting. Mostly, they confirmed what we already knew... that they don't know anything. But here are the things I found interesting.

1. The only treatment for ALS, Riluzole, was discovered in the 90's and extends life expectancy by an average of a few months. Jon has been taking this since last summer. 
2. The ALS community of researchers is getting close to discovering the cause of ALS in a small percentage of patients. For the other 95%, they still have no idea.
3. Researchers are very focused on better shared databases to expedite research and get better, faster results. 
4. The most promising potential treatments for ALS in the short term are linked to irregular protein clumps that are present in ALS patients. There haven't been any human trials yet, so this is probably still pretty far off.
5. There is a study starting at Mayo soon that Jon signed up for months ago. They have way more people signed up than they have slots for...pray that Jon can participate, please! It is a stem cell trial wherein they take the patient's own tissue, manipulate it and inject it into the spinal fluid. That may not be quite right, but close. 

So, the moral of the story is, researchers really don't have any more answers or treatments than they did 20 years ago. But they're getting closer? Let's hope that Ice Bucket Challenge pays off!

I Can Do Hard Things

Superior Hiking Trail, fall 2013. 

Last weekend, my backpacking friends were on the Superior Hiking Trail without me. This makes me terribly sad, but it just didn't work this year. We go every year and are working our way along the trail from Two Harbors to Canada. The SHT is my happy place.

We always go in the fall and try to time our trip for the fall colors. Clearly, last year we hit the jackpot.

I LOVE backpacking but it is definitely hard work. The trail is rugged, uneven and has pretty significant peaks and valleys. I know, I know. It's not the mountains, but I promise it is tough! It is while I am working on those ascents that I have to focus and encourage myself. It's where I learn so much about myself.

Most importantly, I can do hard things.

That's my mantra, both on the trail and in life. I can do hard things. God has made me strong. Capable.  Powerful. Brave. I can do hard things.

And the reward is always worth it.

*Photo credit to all my backpacking buddies...I'm not willing to carry the extra weight! ;-)

Jon's Giant Noggin

Jon's neck muscles are getting weaker. He will be getting a neck brace in the near future. For now, this is how he feels. Click HERE if you aren't able to see the video.

A Charmed Life

Abigail working on a little math. I love the dress code for homeschooling.

Science experiment. It turns out, that layer of blubber on whales definitely keeps them warm in cold water!

I've lived a charmed life as an adult. 

As a homeschool mom, my kids and I spent our days learning together, playing, going on adventures, and basically doing whatever we wanted. Of course it wasn't all roses, and I didn't appreciate it as much as I should have, but it was exactly the life we chose to have - and we loved it.

Jon spent much of our marriage getting more education. He started out as an LPN, got an associate nursing degree, then a bachelors degree in nursing, and finally a masters degree in business administration. He loved working hard and never complained about it. He loved being a nurse and especially enjoyed being a manager....loving the people and wanting to help them become their best selves.

It was a charmed life, indeed.

We've reversed roles now. I've gone to work full time and Jon is homeschooling our kids. The reality is, given the circumstances, life probably couldn't get much better. Jon gets to spend his days with our kids - and he is so great about getting stuff done AND playing. I have a job that I genuinely love and believe in. We are both surrounded by great people.

But I miss it. I miss being cuddled up on the couch reading with my kids. I miss going to the zoo, the children's museum (always accompanied by a trip to Candyland), and on hikes with my kids. I actually miss cooking dinner for my family (I know - I'm as surprised as you are). I miss sewing and working on projects around the house. 

Jon is an amazing stay at home dad, but I know he misses his former life too. About a month before he retired, he was offered a position as a director of a new surgical center. He would get to build it from the ground up. The management position he'd been waiting for for years had also just opened up  10 minutes from home. All those years of more education and working hard were going to pay off.

I think I haven't been posting a lot lately, because these are the kinds of things I think of. And, more than anything, I want this blog to be uplifting. I want you to know that in spite of these hard things, we really are doing well...REALLY well. We are happy. We laugh all the time. Our kids are thriving. But reality is still reality. It's not what we chose. I hope that this blog is still uplifting, but perhaps you'll allow me the indulgence of just being real sometimes as well. 

Words Matter

A random picture of Jon from the State Fair, 2013. It has nothing to do with this post.

Muscle cramps are an unfortunate symptom of ALS. As the brain has difficulty talking to the muscles, they kind of go crazy... cramping and twitching. Weird muscles. Like Jon has to be very careful how he bends or he gets a wicked cramp in his stomach.

Our family was in the car Saturday night when Jack mentioned that he hates the sound of velcro coming apart. A nails on the chalk board kind of thing.

I added that I hate the thought of chewing on cotton balls. It gives my the willies as I type. Jon agreed and just the thought of it made his jaw cramp! Who knew my words would ever have such power?!?

Note: Jack just looked at the photo and said, "Yep, that's definitely from a year ago. He's holding his arm up!" Then we all laughed, 'cause that's how we roll.

Happiness

Jon with Abby and Katie on one of our favorite Utah hikes... Adam's Canyon. Summer of 2012.

Yesterday was our annual church picnic and canoe trip down the St. Croix River. We love this day. We typically spend a lot of time outdoors - Canoeing, camping, Boundary Waters, backpacking, hiking, etc. Today was one of the rare occasions we really felt sad. A sense of loss about not being able to be on the river.

Jon just isn't stable enough to get into the canoe, doesn't have the strength to paddle, and couldn't handle sitting on a canoe seat for any period of time. So this morning we sent our 2 boys along with our two canoes for a morning on the river. We arrived and talked about how high the water is...longingly. The St. Croix is moving fast. It would have been a fun trip.

Here's the hard truth. I'm not grateful that Jon has ALS. But I don't believe we need to be grateful FOR our trials, we need to be grateful IN our trials. Our happiness can't hinge on our circumstances. We can choose to live at the mercy of what happens to us, or we can choose to live a life of happiness.

Sometimes we feel sad. It doesn't change the fact that we choose to be happy.

Watch this for great perspective on gratitude. Click here if you can't see the video!

A Little Reality

Every 3 months, Jon has an appointment with the ALS clinic at Hennepin County Medical Center. This clinic has figured out the right way of caring for people with ALS.

When Jon has an appointment they put us in a room and every practitioner imaginable comes right to us. The neurologist, respiratory therapist, occupational therapist, speech therapist, dietician, ALS association representative, social worker… and I know I’m missing some! Imagine what it would mean if this was not the case. The number of individual appointments Jon would have to make and get to each month. The driving, waiting and scheduling would be a complete nightmare. Life would be consumed by appointments.

Not only do they make it easy to receive care, the people are wonderful. And since it’s Jon, we spend most of our time laughing and having a good time!

Jon had his 5^th appointment last week. He is a full year into his diagnosis, so I thought I would give you an idea of some of the changes that have happened over the last year.

Last August, Jon’s speech was slurred enough to notice, but he was completely understandable. This August he is often asked to repeat himself.

Last August, Jon was feeling a little weak, but was still able to do almost anything. For example, I remember that it wore him out, but he was able to run the chain saw and pull some major growth out of our pond. This August, Jon has a very difficult time doing anything with his arms. Washing his own hair is a challenge, he uses both hands to get a drink, and uses a straw because it is difficult to get the glass to his mouth. To clean his ears with a q-tip in the morning, he needs both hands to have the strength to keep his arms up that long… you know…like five seconds.

In February, our family  went to Disney World (which really is the happiest place on earth, as it turns out). Jon walked around without any trouble from morning until night. We didn’t waste time! OK, he was tired at the end of the day but we all were. Now Jon uses a wheel chair if he is doing anything more than walking into a building.

Last summer, Jon would get a little more winded than usual when exerting himself. This summer, Jon started using a BiPAP machine to help breathe while sleeping at night. He gets quite winded walking upstairs and has a hard time breathing while lying on his back.

Last August, while Jon was already weaker, he had good muscle control. He could stand on tiptoes with both feet. Now he can’t get up on his toes, and can’t even lift the toes on his left foot.

A year, Jon had zero issues with eating and swallowing. At this point swallowing is taking effort and he has a tough time moving food around his mouth. This summer, he had a feeding tube installed (that is seriously the only word I can think of. I recognize that it sounds like he is a car, instead of a person). He doesn’t use it yet, but the surgery was less risky now than it will be later.

Last August, Jon was managing the operating room at one of the biggest hospitals in the state. Last spring he left work to be home with our kids. This a total benefit of ALS, by the way. There aren’t many of those, but this is definitely one of them!

When I stop and think about these things, there have been some big changes. But that’s what they are…changes. To his body. Jon is still the guy he’s always been. We laugh all the time. We talk about our day and what we want to do with our lives. He yells at our kids. (He also plays with, teaches and loves our kids.)  He reads books, we watch movies, we hang out with friends… We totally love our lives.

Earlier this week he randomly told me that he feels totally normal…until he tries to move. Yep, ALS is tough. But life is still pretty great.

Perhaps most importably, Jon can still dress like this. Yes, he is THAT ridiculous.