December 31, 2016

In early December I went to a funeral.   At the end after most people had left a woman approached Jeff and I.  She introduced herself and was already aware that I had als.  This woman told us us about a loved one of hers that was diagnosed just over a year ago.  She said how with her loved one, the disease is progressing quickly and he is already in a wheelchair.  She went on to tell me I looked like I was doing well, and added "I hope that we get as much time as you. (pause)  Why do some people get more time than others?"

I glanced at Jeff, not quite sure how to respond, but if anything, her comment seemed to be rhetoric.

We certainly didn’t have an answer to her question.

Goal for today:  Be Present.

Some photos from 2016…

I see beauty in all of my friends

Megan has a t-shirt that says:


"I see beauty in all of my friends"


Is it weird that I'm about to post pictures of plants and instead of people?

Shelby, a fellow plant lover would say, "Of course not."





'Friends'  (Thank you Dad for taking these photos)

 

just some thoughts (and a picture)

An email from a cousin:

Hey Janae!  I am doing a blog post on ways to support, love, serve those who have chronic health problems. I know for a lot of people this is really difficult, and many are not sure what to say or do. They don't want to say the wrong thing but they care. 

I emailed her back with:

Some ways family and friends have helped us:

-          Countless meals (including freezer meals)

-          Grocery shopping

-          Laundry

-          Carpools

-          Visits

-          Girls Night Out (movie, a concert, roasting marshmallows over a campfire, etc)

-          When my youngest daughter was 3-4 years old, a friend took her for two hours every Friday so I could take a nap.

-          Different friends help me with hair and makeup and a friend comes to my house to cut my hair.

-          If I am planning a party or get together, friends make it happen.

(I will add: take me to the temple, take me to plant nurseries, plant the plants, make a birthday cake for my kids, go on walks with me, help me organize my house, help make grape juice from our grapes, help with home and yard improvement projects, read a talk for me in church, include my kids in outings, pick up a slurpee... Everyday there is something.) 

That is a ridiculously short list compared to the amount of help I received.  The kindness of others has been a huge blessing to my family.

----------

Continuing my thoughts here.... (Parts of this are a repeat of what I emailed.)

The other day in church a twelve year old boy was sharing his testimony. One of the things this boy talked about was how even if someone is different from you, you should still be nice to them.

It made me think about how I treat people.  Why do I sometimes feel uncomfortable around someone who is “different” OR someone who is experiencing a difficult trial?  Why am I hesitant to talk to them?  Perhaps I am worried how they will react if I say something.  Will they be upset? Will they think I’m nosey? 

I find myself on this side, knowing someone who is going through a hard time with their physical health, or depression, a concern with their child, difficulties in their marriage, grieving the loss of a child/parent/sibling, losing a job, etc. I want to do something yet I don’t always know what to say or do.

Sometimes it isn’t my place to be involved, yet there are the times the person’s face keeps resurfacing in my thoughts.

When you get that “feeling” to check on a person it might seem random and out-of-the-blue, but God is giving you a nudge towards someone who needs you.  I know that God is aware of each one us and it is through the actions of others He sends help.  Your gesture can be as easy as sending a text, an email, a handwritten note or a treat. Call them on the phone or stop by and say “Hi”.

It might seem like a small thing, but it will mean a great deal to the individual knowing someone is aware of them and cares.  From the kindness of others I know that this is true.

The other part to this was “Why might I feel uncomfortable around someone who is different?”

For me, I probably just don’t know what to say to them. 

Here is a situation for the purpose of comparison I have found myself in:

If you are trying to talk to someone who speaks a foreign language the conversation often doesn’t go far.  You ask how they are doing and other simple questions.  After a while you have both exhausted your limited similar vocabulary, the pauses in conversation are a bit too frequent and you awkwardly part ways.  You genuinely like the other person, but the very important aspect of communication is difficult and frustrating. In the future when you see that individual, you both smile and say hello and perhaps ask how the other is doing, but that’s about it. 

In the past I have been-there-done-that from both sides.

If you are talking with me and you don’t know what I said, just tell me and I will repeat it.  No big deal.  This is much better than you nodding your head and pretending to understand me when you don’t.

One thing I DON’T like is when I ask a certain 14 year old boy to do something and HE PRETENDS TO NOT understand me. Hmmm… But THAT would probably happen even if I had clear speech.

Back to the topic.  It's a two-way road.  There are times when I am stand-offish and do not make it easy when someone is trying to talk to me.  Developing and showing genuine interest in others is something I certainly can try to be better at. 

I love this 14 year old boy, even when he acts 14.  If you don't know what I mean than you probably aren't a parent of a teenager.  (Thank you Mary for the picture.) 

als - pseudobulbar affect and a Rx worth looking into

I want to raise awareness of Pseudobulbar affect, because until six years ago I had never heard of it.

First, here is some condensed information straight from Wikipedia

(Oh admit it, you’ve used this site too.)

“Pseudobulbar affect (PBA) is a type of affect characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays PBA occurs secondary to a neurologic disorder or brain injury. Patients may find themselves crying uncontrollably at something that is only moderately sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example.

“In some patients, the emotional response is exaggerated in intensity… For example, a sad stimulus provokes a pathologically exaggerated weeping response instead of a sigh, which the patient normally would have exhibited in that particular.

“Patients report that their episodes are at best only partially amenable to voluntary control… they often have insight into their problem and judge their emotional display as inappropriate and out of character.

“Such sudden, frequent, extreme, uncontrollable emotional outbursts may lead to social withdrawal and interfere with activities of daily living, social and professional pursuits, and reduce overall healthcare. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn impairs their coping mechanisms.

“Pseudobulbar affect is a condition that occurs secondary to neurological disease or brain injury, and is thought to result from disruptions of neural networks that control the generation and regulation of motor output of emotions. PBA is most commonly observed in people with neurologic injuries such as:

traumatic brain injury (TBI)

stroke

Alzheimer’s

multiple sclerosis (MS)

amyotrophic lateral sclerosis (ALS)

Parkinson's disease (PD)

Lyme disease  

“A study designed specifically to survey for prevalence found that 49% of patients with amyotrophic lateral sclerosis (ALS) also had PBA. "

I’m back.

I started experiencing this side effect.   For me, while it was not yet debilitating, it was increasingly frustrating to not be able to control my emotions as I had before.     I didn’t know why things were funnier or sadder than they ought to be.   There were times where I would be crying and in my head I was thinking, “What is going on?  This isn’t THAT sad, I have got to get a grip on things.”  I could reason out the situation as it was happening, but I was unable to control it.

In relaying this to my doctor he told me about pseudobulbar affect and recommended that I try Neudexta.

Within a week of going on Neudexta I began to feel more in control and it was such a relief.

Neudexta comes a pill form and is pricey and I have since switched to Dextromethorphan/quinidine which has the same ingredients but it is a fraction of the cost. It is mixed at a compounding pharmacy. 

als - just use the dang walker

I think I have had an overall healthy lifestyle for most of my life.   I figured while here on earth I get one body, so why not take care of it and then see what it’s capable of. 

Then slowly, bit by bit, the effects of als began to creep through and I began to lose my body.

The foot drop started in my left foot and that is when I began to trip. Sometimes I would catch my toe on the edge of a rug or an uneven sidewalk crack.  If I would put too much weight on the outside of a foot, pivot too quickly or walk backwards… Those careless movements would topple me over.  

I tripped and stumbled and fell with increasing frequency. 

For much of that time there was a walker in my bedroom sitting there gathering dust.

What’s that?  Why wasn’t I using the walker?  I would have to say it was because I was (am) stubborn.  I wanted to use up every independent step I had.    I knew once I started using the walker there was no going back to unassisted walking.

Losing the ability to walk normal was devastating.  Walking is just something you do.  You shouldn’t have to think about putting one foot in front of the other.  I have mentioned this before, but it blew my mind that for the first time in my life I couldn’t just exercise harder to get stronger.   I would still go to the gym and use the elliptical machine to try and maintain the muscle I had, although there was no hope of building any new muscle.

Eventually the process of going to the gym took too much energy.   I bought a stationary recumbent bike off of the classifieds and “worked out” at home.  I used to do a simplified yoga to stretch my always tight muscles.  

The day finally came when I was tired of always being worried about falling.  I sat on my bed looking at the walker and finally took hold.   And that was the end of unassisted walking.   But, more importantly, it was the start of increased safety.  The walker provided needed balance and when I was tired I could turn around and sit on the seat.  Once I finally started using the walker I felt a greater peace of mind.   

Hindsight being 20/20, I should have started using the walker long before.

Some time has passed since then and now I only use the walker minimally during transfers and have moved on to…  The wheelchair.

Mentally this was a VERY difficult transition to go from walking to sitting.   The first time I took the wheelchair out I went on a walk with my sister and I was on the verge of tears the entire time.   I was grieving the loss of my ability to walk.

But, it was time.  The wheelchair has provided so much more freedom to go where I want.   I love being able to go to the park with my kids or to 7-11 and get slurpees.  I can go on trails, or to Red Butte Garden or the zoo and not be completely exhausted afterwards.  We have a lift on the back of our minivan to transport it around.  It works well enough since I can still walk a few steps with Jeff’s assistance to transfer from chair to minivan.   I am so grateful he has big muscles :)

Sometimes when Jeff will ask me, “What do you want to do today?”

I say, “I want to go for a run.”  

Don’t feel sorry for me (Ugh).   Pity and self-pity is something I try hard to avoid.

I just think that it would be so cool to break out of this body and RUN.  

als - the "no hands diet"

I currently refer to how I eat as “The No Hands Diet.” 

The idea behind this is that you cannot use your hands.  At all.    Every meal, every snack and every Costco sample you eat is given to you by someone else.  If you are checking out a bowl of peanut butter m&m’s you can’t have any until someone picks one up for you.   

Hypothetically let’s say you are at a party with a fantastic spread of food, and quite suddenly, you become aware of how people around you eat and eat and eat.   The entire time you are thinking, “All I want is an m&m.”   So you ask someone for help and they kindly say, “Of course.”  Then the person licks some guacamole off of their fingers before taking a handful of those m&m’s.  THAT kills your appetite pretty darn quick.  

Moving on.

I initially got on the No Hands Diet because my arm muscles are weak, but what if a person begins to have difficulties chewing and swallowing and find themselves choking on food.  Then there is the option of a Percutaneous endoscopic gastrostomy (PEG).  This is a flexible feeding tube that goes through a person’s abdominal wall into their stomach.  Nutritional supplements and fluids are poured in the tube bypassing the need to use your mouth.

Going back four years ago this fall, I found myself trying to decide whether or not to get a PEG tube.  At the time I didn’t feel like I needed it because I could eat well enough. But, I also didn’t want to put the procedure off until it was my last resort.   At the time I could still (very slowly and with increasing difficulty) feed myself.  I also didn’t want to get one because, for me, it was admitting the disease was progressing and I wasn’t strong enough to fight it.  (I realize the flawed logic now…)

In a very uncharacteristic Janae move I was proactive and I decided to get the tube.

While it is a relatively simple outpatient procedure, having a hole cut through your stomach wall does make for a painful recovery.   

I have had the tube replaced twice (in the same spot as the original, so no new hole)  and those times the follow-up recovery was easy. 

I resented the tube for quite a while.  I hated looking down and seeing the outline of the tube under my t-shirts and would try to wear clothing that disguised its presence.  It was rarely used that first year.

Now it is not a big deal at all.  It is just part of the way things are.  There are times where I am exhausted and it is nice that Jeff can just pour a can of “food” in and just be done.  I will add that even though those 350 calories per can are handy, it often leaves me with a slightly queasy feeling.

Since I have a BlendTec blender, we occasionally blend up real food to pour in.  We have to add a lot of liquid in order for the blend to go down smoothly. There are also various recipes online.  

Coming back to today, I average ½ my calories through the tube, ¼ via a smoothie or nutrition drink and ¼ my calories come from normal food.  Those calories, in their various forms, are all part of my No Hands Diet because now there is no way I could feed myself.  I’m grateful for the many people who help me.

Last week Jeff and I went out to dinner and we ordered the soup of the day. It was a Porcini Coconut Emulsion garnished with fresh chives and a coconut crouton.  I didn’t know what to expect but it turns out this soup is what dreams are made of.   There was no chance of that going in the tube.  I savored each spoonful. 

als 101

I think I will try a series of posts about als 101. 

Things I have done that have worked for me. 

And also things that I wish I had done differently.

Then again, I may get distracted by the warm summer sunshine and my garden and only do one or two posts.  

Monday night dance par-tay

Quick explanation:  In our church FHE (Family Home Evening) is one evening a week (usually Mondays) where the family gets together.  Typical format is opening prayer, song, review the week’s schedule, short lesson, closing prayer and then dessert.  Recently we have had lessons on everything from the scriptures, to family history, what to do in an emergency, or we have done an activity together like climbing.  The whole thing is maybe 20-30 minutes.

That being said ...

I have never had a FHE end quite the way it did two nights ago. 

Jeff gave a lesson on money and budgeting, which is not the most exciting topic.   Now we normally try to keep the lessons short, but this time it went long.  I knew we blew our time limit when the kids questions grew increasingly random, the girls became fidgety, and Erik with glazed eyes put his head on the placemat still on the kitchen table.

Trying to wrap it up quickly, Jeff asked Erik to pick a closing song.  He raised his head (which now had the pattern of the placemat imprinted on his forehead) and said, “Take on Me” (a song from the 80’s by A-ha).

I probably then said it should be a church song, and so Claire and Jeff began to sing a primary song really fast to just end everyone’s misery.    At this point Erik wandered out of the room and came back (smiling) with an ipod and speaker.   The primary song was now over and “Take on Me” began to play.  Erik turned the volume way WAYYY up and he began to sing.  Within seconds Claire and Megan came back to life and started dancing. I did my head-bob-dance and lip synced along.

All three kids then danced to (and belted out) “Living on a Prayer” by Bon Jovi, some 21Pilots and finished with Coldplay.

 

 

climbing. climb on.

 

Mother-daughter picture.   I had to have a standing up pose :) 

Ohhh this picture makes my heart HAPPY.

I used to climb in high school and college.   Even though I only climbed a handful of times afterwards I never got rid of my harness and shoes and for the past few years they’ve sat in my old climbing bag as stinky as ever.

Last fall I purchased some half-price passes online to a climbing gym and found myself REALLY hoping my kids would like it.  Each person has their own interests and it can be tricky finding something all five family members agree on.

Turns out everyone had fun and we are now are trying month-to-month passes.  What I enjoy is that it is something active we can do as a whole family during the winter.   Jeff,  Erik, Claire and Megan (in her cheetah print pants)  climb and I can be right next them watching and feel a part of it.   

January 8th

This winter I have been trying to find beauty, and I found it in the trees outside.  

Now that the leaves have fallen I can see the structure of the plant.  The individual branching patterns of the trees are fascinating.  There is the strong form of the Sycamore that Megan climbs in the summer.  The branches of my Tri-Color Beech curve upward reminding me of a ballerina in First Position.  Then there are my three Prairie Fire Crabapple trees, they are all whack-a-do crazy without any order.

The other day Claire and I sat side by side-by-side looking out the front window.   She had paper and a pencil and was drawing a picture.   I told her that I was sketching the trees too, but with my eyes.  

My high school art teacher once said she would give us five dollars if we could bring her something from nature that was perfectly straight.  No one ever got that money.   Her challenge did make me more aware of the lines and shapes in nature.  

You should have seen the lines on the winter trees Claire and I sketched.  

They looked awesome.