#8 - Field Trips and Parking Lots

I am behind in posting, I know I have all day, at least between taking medications, trying to eat, and getting dressed.  Turns out that when you are taking five or six medications that all have the same side effects of "drowsiness, dizziness, concentration problems..." those effects start to actually show up.  Never been this unmotivated or distracted before.  And, it is likely that this post might be all over the map.

Let me start with August.  Lots of company!! No better place to be in the summer than the Northwest. Beautiful weather meant lots of time outside, reading, visiting, making good use of the new ramps.  We had a visit from our adorable nephew, Russel, and his beautiful new wife, Allison. They traveled from Florida, where Russel serves in the Coast Guard.

The very next week Bill's sister and her husband (Cathy & Tom) arrived  from North Carolina.  We were able to make a trip to Pateros, WA to watch Max race his jetski.  This was my first real field trip with the wheelchair, and it was a lot of fun for me. I also had visits from two of my closest friends, Maddie and Cherie.  I think my face still hurts from laughing!  Cherie also took the ALS Ice Bucket Challenge with me.  The house was full of loving friends and family, from near and far --so blessed.


 




 September brought back to school activities -- without me.  Still the thing I miss the most.  I feel blessed to have had the ten years I had -- I really loved every single one of those students.  Miss the wonderful people I taught with, too.  Just excellent human beings.  It has been gratifying to hear from, and even receive visits from, many of my former students.  They would be surprised at how often I think of them all.

Through the tenacious efforts of my stepmother, Jeannie, we got an appointment at UCSF Hospital in San Francisco to see the head of the ALS clinic there.  We were hoping to get more information about possible research and clinical trials.  So, Bill and I loaded up and took another field trip.  Felt a little like the Beverly Hillbillies -- van jam packed with medical gear.  A walker, shower chair, cooler, Bipap breathing machine, cough assist machine, portable ramp, feeding tube pump, foam wedges to elevate me in bed, clothes, medication bag.  Bill got really smart about stops.  He figured out that every Starbucks had an accessible restroom for me.  So we targeted our stops, and he got his caffeine fix.  It was exhausting, but doable. Two day trip.  Different than our past trips south -- not a lot of conversation.  The ramp van is noisy, and makes it hard for Bill to hear my ipad speech app.  We kept my Nook charged, so I got lots of reading in.

The high point of the trip was spending time with family.  My dad and stepmom, my cousin, Mark, and his beautiful wife, Kathryn.  Meeting my stepsister, Kimberly, and her husband for the first time -- and loving her.Seeing my Aunt Lois.  Seeing the Lambro family, and Auntie Cheena-- who I have known since birth, and have had very important roles through my life.  We were surrounded with love, laughter and happy memories.  The doctor visit was interesting, but disappointing.  While it sounded like I may qualify for some trials, there seemed to be nothing currently open, and it sounded like I would not qualify for stem cell treatment, due to my speech and swallowing symptoms.

September also included a visit to my pulmonary specialist, and testing.  There has been some decrease in function, but overall, pretty strong.  First positive news in a year!  Next visit in December.  Also saw the sleep specialist, who felt that my Bipap machine was working well for me. (Another bit of good news.)  Saw the doctor at the Swedish ALS clinic, who was able to prescribe a medication for the very painful burning sensation I have developed (neuropathy) in my feet.  So, overall, a good month physically.

My wonderful neighbor, Kathi, volunteered to organize a team for the Walk to Defeat ALS in Vancouver, WA on September 20th.  It was a hot afternoon, but over 50 teams showed up, raising over $137,000 -- well over their $80,000 goal.  What an amazing job Kathi did.  She made a beautiful banner, carried by my nephews, Kyle and Zack. Almost forty people comprised our team -- friends that we haven't seen for over a decade, new friends, college friends, neighbors, family, sorority sisters of my daughter, Madeline.  It was an overwhelming day...so much love and support.  Not to mention we raised almost $4,000.

September brought our daughter, Madeline, home from her internship in Palm Springs -- for five days.  Then she was moving back down to Oregon State University, and her senior year.  The time went quickly, but it was great to hear about her internship experiences. The end of the  month brought my little sister, Suzanne.  Who quit her job, and left her home, hubby, and dogs to care for me.  An amazing sacrifice for both her and her husband.  Bill and I are very thankful. More on that in the next post.

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 October.  After a week to settle in, Suzanne took the reins.  Bill accompanied Maxson to Lake Havasu City, Arizona to the IJSBA World Final Races (World Finals for Jet ski racing).  This was only Maxson's second year at the finals, and he was entering a second class on a jetski he had only raced once.  Last year, he won second place in the Vintage X2 class, on a ski he had rebuilt.  He had set a goal of placing first this year -- and I had hoped to be there to see it.  Bill and I had analyzed every part of the trip.  But when we got to two weeks before, we both had to admit there was no way to make it work.  I did not want to be the center of concern, that needed to be Max. So, off they went.  Today's technology allowed Suzanne and I (and a few friends) to watch the races live.  It was so exciting to see him, and hear his name being announced.  Then waiting for Bill to text me with details.  Imagine the pride and excitement when we found he had indeed met his goal...first place in Vintage X2 class, against some former title holders!  He did not do as well in his second class, but made it through the qualifying rounds, and finished the main race (half the entries did not qualify).  Couldn't be prouder.  Suzanne's husband. Mitch came to visit, and had a great banner made in Max's honor, which hung over our front porch for Max to see when he returned.

Another great event was the completion of a renovation of our master bathroom with my brother, Craig, as the general contractor (and sometime laborer) and his wife, Dianna, as designer.  Not only is it beautiful, modern, and unique, but stylish and accessible.  My brother and his gracious wife gifted us with their time, so very generous.

As is apparent, lots going on. Fun times, friends and family, love and laughter,caring and compassion.  As I have said before, I am blessed.  More to come....

#7 - "You may not find a path, but you will find a way" -- Tom Wolfe

Today I told one of our home health care team that the hardest challenge we are facing is not being able to keep up with the rapid progression of my disease. Even though we try to get a step ahead, the process slows things down. Without complaining, I want to give you a glimpse of daily life today.

I wake up early, as always. Bill is still sleeping, and I don't want to wake him yet, as he is not the morning person I have always been.  I have to use the bathroom, but I will wait -- as I can no longer get out of bed on my own.  So I read my Nook, or check Facebook or my email, or maybe doze off for a bit.  If I am lucky, Bill wakes up before long -- if not, I give in and wake him up.  Getting up now requires the removal of the Bipap breathing machine mask, and disconnecting the feeding line for my feeding tube.  Then, Bill has to swing my legs out of bed, and help me sit up --then bring the walker for me.  The walk (shuffle) literally takes 4-5 minutes. It is about 20 linear feet.  I need help on and off the toilet.  I consider myself lucky I can still use the toilet on my own.

To save time, I often get dressed there ( yes, really).  Bill has had to ask what clothes I want, and tried to find them. He cannot tell the difference between pink and coral, navy and black, or green and turquoise, so it often takes 3 or 4 picks.  He does this without complaining.  Once dressed, I get helped up, and shuffle with my walker to the sink, where I wash my face and brush my teeth--with one hand.  My left hand no longer works to hold anything, open anything, or really help.  I can use it to help steady myself against the counter.  Then, I shuffle to my wheelchair.  This entire time, Bill has been by my side.  It has taken the better part of 45 minutes--a quick morning.

Off to the kitchen, where Bill crushes my first pill of the day, mixes it with juice, then gives it to me to drink.  Only then does he take a shower and get dressed.  I read, check email, enjoy the morning view and wait to have breakfast--I have to wait an hour after my medication.  With the feeding tube, I can now have my protein drink in a couple of minutes, instead of the 20 minutes it used to take to swallow it.  That is progress!  But, again, it is Bill that has to prepare the syringe, water, drink, and other medication, then clean it up.  Somewhere in here he usually squeezes in a cup of coffee and toast with peanut butter.  Usually we are now at about ten o'clock -- and I need to use the bathroom again ( with help) -- another 10-15 minute adventure.

I haven't yet mentioned that, in spite of my best efforts, only about 10-20% of my speech is understandable.  So all communication is a mixture of American Sign Language ( thank you, Kyle Brossoit for that exposure), charades, and an app I found for my Iphone.  It takes forever.  Lots of guessing on Bill's part, and frustration and creativity on my part.

Most every day is filled with people in and out.  Physical and occupational therapists, speech pathologist, nurse, bath aide (I can no longer shower on my own, either), friends, family.  A great break for both of us--but tiring for me, too.  Speaking, or even typing with my speech app takes energy.  In between visits, I read, sew ( am making baby blankets--goes slowly with one hand and a foot that can barely work the pedal), sorting photos, making lists, sending emails, and shopping online.

Think about shopping.  Bill hates shopping.  So, while I used to buy shoes, clothes, groceries, gifts, etc., this now is a whole different challenge.  I do like those boxes from Amazon, though!  I get out a couple of times a week -- even grocery shopping at Fred Meyer is an outing.  I can drive my chair right into the van--and then Bill hooks up two straps.  I pull forward so he can connect the other two straps and my seat belt.  Voila'!  off we go.  If we are lucky, one of the van accessible handicapped parking spaces is open. It takes a full 8 feet for the ramp out of the van and my chair.  Now, we have to undo the four straps so I can exit the van.  This process is about ten minutes.  Again, this is all Bill.  All our communication is my weird mixture of "slush", charades, and my Iphone app.

Kids are fascinated with my chair--my favorite moment has been when the mom of a 4-5 year old boy asked me if I would answer a question for him.  He wanted to know why I was in the chair.  I so respected that mother.

More of the same all day--but let me add that my meals are blenderized food--Bill has become the Master Blender--he can blenderized anything.  Even pizza. If it not just the perfect consistency, though, I cannot swallow it.  Picky, picky.  Bedtime is the reverse of morning--help getting undressed, using the bathroom, getting meds prepared, hooking up the feeding line and the breathing machine--again, all Bill.  And getting food at night means needing to use the bathroom in the middle of the night--unhooking my machines, helping me out and back in bed, etc.

Notice this is just about taking care of me--he still has been working, paying bills, helping our kids, managing other household issues, and has to be my personal secretary and scheduler because I cannot speak on the phone.  It is exhausting for Bill and frustrating for me, because I really can't help.  It is also lonely and frustrating to be unable to speak. Sometimes it is too much energy to write or type a sentence--so it is left unsaid.  I have many conversations inside my brain--some really funny jokes, too!  It's just that no one hears them.  Now you know why I may be laughing out of the blue.

There is no marked path for ALS--no map.  It is moving faster than we want.  We truly take one day at a time.  We continue to be as independent as we can--but that is getting more and more difficult--for both of us.  We have been blessed beyond measure by friends and family--people who have bravely helped in a myriad of ways.  I don't think either of us expected the outpouring of love we have received.

A word about the Ice Bucket Challenge for ALS--I feel so lucky to be living during this social phenomena--and to be able to be a face that people can put to this horrible disease.  If my experience helps find a treatment or cure for others, that will be a silver lining.  I am touched and humbled by the people (friends, family, former students) that have participated on my behalf--and those who keep me in their prayers. God is good--and we have received many blessings through this trial.

A year ago...just 12 months...getting my classroom at Tumwater Middle School ready for the new year, hiking Mt. Rainier with dear friends from Europe, swimming, cooking, shopping, driving, talking (a lot), working out.  Above you read how life has changed.  I still believe in the silver linings -- I am finding my way through -- with lots of help.

#6 - "I wish this fork in the road had better directions." (unknown)

The past year has been full of surprise, frustration, learning, patience, more frustration, confusion, more learning, acceptance, joy, sadness and love -- lots and lots of love.  My view of being a "glass half-full" person has been challenged, and I have been challenged by what it means to fight.  I have fought many things in my life -- the "system", my weight, depression, and more.  I gained a job I loved, better health, a happier life, wonderful friends, and the respect of many people I care about.  It really is not in my nature to "roll over" or give up.  What does that mean for me now?

To be given a diagnosis of a disease or condition with no known cure is the most frustrating thing I have faced.  How do I fight? Can I fight? Should I fight?  Do I give in?  I have read a lot (no surprise to those that know me well), I have prayed a lot, I have had thousands of hours to mull it over.  I have met with an army of doctors, talked to friends and family, and read even more.  I have no real answer.  I do, however, have a perspective.

I have accepted I have ALS -- don't like it, but accept it.  I know and accept that there is no known cure, and that my symptoms will continue to progress -- it is a fatal disease.  I have chosen to enjoy each day to the best of my ability.  As I told my father this weekend, if I am miserable, everyone around me will be, also.  It is much more enjoyable for everyone if I am happy and thankful -- including me!  However, I am bound and determined to be as independent as I can be, for as long as I can be -- this is my first bastion of fighting.  I am also willing to consider possible trial treatments, depending on timing, etc.  Acceptance does not mean surrender.  Acceptance in this case means to recognize and acknowledge the situation.

I do not intend to fly off half-cocked into voodoo doctor treatments, or chase rainbows -- but I do intend to make sure I am giving myself every opportunity to maintain my independence (as it is) or improve it, if it is within my power.  Giving in is not the example I have ever set for my children or students -- why would I start now?

So, the fork in the road?  Surrender or fight?  I am accepting the challenge, not the surrender.  And I have an army of friends and family behind me, I know.  Onward!

#5 - “A journey is best measured in friends, rather than miles.”

What a wonderful quote by Tim Cahill.  It really sums up what I wanted to write about today.  This past year has been a difficult one...but, as I have mentioned before, it has also been filled with blessings.

The number of people that have written, called, emailed, texted, come by to visit, and helped out in one way or another has been overwhelming and appreciated.  I think of friends that have passed away, and how sad we have been to have not seen them enough, or not "been there" for them.  Those thoughts make this attention oh so much more meaningful as I am here to experience it.

We have had friends and family from California, Oregon, Florida, Eastern Washington, as well as locals come to stay, cook, clean and just visit.  It has been a great help to Bill -- and wonderful for me.  Last week one of my oldest friends (my college roommate Cherie) said, "We love you."  The great thing about that sentiment is that I KNOW!  I can feel the love.  In every visit, hug, joke, meal, conversation.  In every load of dishes that someone does, or load of laundry.  Honestly, I have never felt so loved and so lucky.  How lucky to have friends and family that aren't afraid to face this tough diagnosis with me and my family.  How lucky to have them show me when I am still here to appreciate it.

What a wonderful gift and example to my children, too.  To see when the going gets tough, you don't turn away, but pitch in and make the best of things.  The most valuable thing we have to give is our time and attention -- things that are in great demand in our lives.  What I can tell you from experience is that even the smallest gesture is welcome to people who are struggling.

I even received a banner from Tumwater Middle School, signed by many of my former staff members and students.  I just love it.  I really miss the students -- miss being a teacher.  That was a wonderful and fulfilling chapter in my life--filled with wonderful people that were not only teaching, but learning every single day.  I know I learned as much from my students as I did from the teachers!  I never had a student I did not care about -- every single one was "my" student, part of my family--no matter how difficult they wanted to make it.

If my life journey is "best measured in friends", then I am indeed blessed with a rich, enjoyable, and entertaining journey ahead.  Thank you for joining me.

#4 "No Matter Where You Go, There You Are"

It has taken some time for me to work up the energy for this post, so I apologize for the delay.

The past few weeks have been hard, busy, and full of ups and (mostly) downs.  We finally got to meet with the specialist at Swedish Medical Center in Seattle.  Since then, I have experienced another MRI, a barium swallow study, an EMG (electromyogram), a pulmonary function test, and more blood work.  Coming up in the next couple of weeks are a specialized brain scan (DatScan), sleep study, wheelchair consultation, meeting with another specialist, and follow up with a pulmonary specialist.  Do I feel like a science experiment?  Yes.  Are we getting answers?  Yes.

The most recent diagnosis is ALS (Lou Gehrig's disease)-- total surprise.  My symptoms have traveled a unique path (like most patients), and it made it difficult to diagnose.  Two neurologists are in agreement, and I meet with an ALS specialist in June for a "final" 3rd opinion.  Definitely not good news.  During this same time period my symptoms have gotten progressively worse, and it is clear to me that we won't be reversing the direction of this journey.  This isn't really something I can fight.  At first it was hard not knowing what I was fighting.  Now, it is hard to know that I really can't fight.  Don't get me wrong--I am not "giving up"-- just understanding how to prioritize where I use my energy.

I am hoping for as much time as I can get -- so much to do.  If only my energy and physical abilities could match the needs!  I wasted too many days feeling sorry for myself -- yes, I was having a "pity party" (although I was enjoying lots of old black and white movies from the '30s and '40s).   I will still have some of those days, but I want to have more days of enjoying life.  I just have to enjoy it differently than I used to.

With lots of downtime, I have had lots of thinking time. I have started a mental list of all of the great adventures I have had in my life -- it even surprises me!  I will save that for another post, but if you haven't taken the time to think about your life so far in those terms, try it.  It definitely brings a smile to my face.

I have received the most wonderful notes, cards, emails, texts and visits from people in my life, too.  I can't even put into words how powerful they have been, and how helpful they have been in helping me "keep my positive."  Bill and I are learning to ask for help, accept help, and appreciate the love being shown to us.  I don't ask "why", as it doesn't matter.  Things happen to people everyday.  It is just part of my journey.  It is hardest for me to see and know how difficult this journey is for my husband, children and family.

Thank you for sharing the journey with me.

#3 "Be Careful What You Pray For...."

First, I want to be clear that this post is written tongue-in-cheek.  Those that have known me for awhile know that I am fluent in sarcasm. This post is about humor.

There are numerous prayers and comments that have left my mouth the last few years that are being answered in interesting ways.  Let's start with praying for God to help me with patience.  Seriously?  Apparently, I should have been a little more specific.  Every step of this process is about waiting -- try this medication, come back in 6 weeks; now we will change this, come back in a month; then wait 2 months to see a different doctor.  Even getting dressed takes forever.  And God must have thought I was praying for my husband, too, as he is having to exercise GREAT levels of patience with me and this whole process.

I believe I was doing some serious praying about my weight last year, too.  Apparently, working out 5 mornings per week was not working for me--but now the weight is just falling off -- not enjoying that process as much as I expected.  And I REALLY miss salty/crunchy food.  Speaking of food, here is a funny item. When in high school, I worked full time at our local hospital as a dietician's assistant.  I was in charge of calling the individual orders, and making sure each patient's tray was complete.  I used to swear I would never eat pureed food after that...guess what my diet now consists of???

Let's also cover me talking to my mother about shuffling her feet a couple of years ago -- now those are my feet we hear shuffling down the hall.  And my jokes about the electric lift recliners ( that I used to jokingly call "launch" chairs) -- yes, you guessed it--I am sitting in one. The only chair in the house I can get out of without a struggle.

I also have been known to be a little chatty -- even my report cards from school referred to my "talents" in this department.  I must have used up my quota of words, as speaking is becoming more and more difficult.  What an inconvenient time, too, as I try to communicate with my medical team!  As my left hand has limited function, I now type using the "hunt and peck" method, so even email is work.

I have lived a proudly independent life...until I became mostly dependent...in what seems like the blink of an eye.  I really do find humor in much of these circumstances, thank goodness.  As hard as some of us try to control our lives, there really is so much we have no control over.  I am learning to "let go and let God" every step of this process.  It is not easy, but in many ways it is freeing.  What lessons are there in this situation?  First, never say never.  Next, stop long enough to enjoy each day. And third, let people love you and be there for you -- they need it as much as you do.

Love and great appreciation to all that have written to me, called, texted, emailed, visited, prayed and thought about me.  Everyone of you have a piece of my heart.

#2 "Are We There Yet?"

Well, it has been almost a month since my first post.  I elected to put off officially publishing my blog until I had been able to get my whole family in the loop.

My daughter has been studying abroad in London these past three months.  She returned home to a different mother than the one she left -- at least in physical form.  It wasn't news we wanted her worrying about halfway across the world.  We had a chat this weekend, upon her return.  She is a stalwart young woman, and I know she will be joining my son and husband as we travel this journey.


After discussing our fears about MSA with my neurologist last month, I did receive a referral to a Movement Disorder Specialist at Swedish Medical Group in Seattle -- but couldn't get in for two months.  I understand there are not many of them, but when your physical being is in retrograde motion -- getting worse each and every day -- two months seems an eternity.  So, we are playing the waiting game until April 29th.  In the meantime, we are all making adjustments.  I have transitioned from occasional use of a trek pole to using a cane in and out of the house -- and even using a walker in the house.  Eating is becoming more difficult, as it is difficult to chew and swallow without choking.  In fact, I have lost almost 20 pounds, and 13 inches since November (not the way I planned on losing weight).  Everything takes more energy and more effort -- and more time.  Being the punctual one in the family, this is an adjustment for me, as I am the one running late now.

My children (ages 21 &23) have been great, and have taken to teasing me about most of my symptoms.  We have always shared a wonderful (if corny) sense of humor, and it really helps take the edge off my frustration.  Most commonly they like to tease me about my "drunk talking" or walking -- even though we all know I haven't had a sip of alcohol.  We have to hope I don't get pulled over driving (one of the few things I can still do --at least for short distances).  My husband has really had the biggest adjustment.  Six months ago his wife was self-sufficient, teaching full-time, working out, taking care of the house, traveling...you get the picture.  Today he is jumping up anytime he hears me cough or choke; helping me in and out of chairs, cars, and the bed; researching my symptoms and medication; contacting my family to keep them updated; making calls for me because my voice doesn't hold out on the phone; and taking over many day to day household duties I can no longer do.  Oh yes...he still is working.  This is on top of worrying about what the future holds.

I am still going to the gym, and working with my physical therapist.  I have a fabulous chiropractor and massage therapist.  I am meeting with a nutritionist next week, and have started meeting with a psychologist to help me deal with the emotional upheaval that is part and parcel of my journey.  ( I do have to share how frustrating it is to meet with the psychologist, then be unable to speak because my vocal chords won't work if I start crying--really????  At least he is patient!)  My friends and family have been amazing, and my stepmother has become a warrior in my corner, asking questions, gathering medical research and communicating with the family on my behalf.  I am feeling so very blessed with the people in my life.  I am thankful for the prayers and loving wishes of people I know, and even people I don't know that have added me to their prayer list.  I promise to fight the good battle -- one day at a time.

Just waiting to find out more about my journey...not there yet!

#1 "Toto, I've a feeling we're not in Kansas any more."

So where exactly am I?  Not where I expected to be.  I am in a place of surprise, shock, uncertainty, fear, sadness and exhaustion -- while still trying to be the "glass half-full" girl I pride myself on.

In October, a month before my 54th birthday, I was diagnosed with Parkinson's Disease.  A definite detour in my life's path.  Just starting my 10th year of teaching, working out 5 days a week, traveling often with my husband of 26 years -- I had been working hard to counteract what I thought were signs of aging & menopause.  In the months since then, my symptoms have continued to progress, more rapidly than any of us expected.  The medication and physical therapy has had minimal impact.

Each visit with my neurologist has brought an increase or other change in prescribed medication.  He has admitted (and this is supported through all of my research) that treatment is a bit of a guess-and-check process.  You keep trying things, as each patient has a different path of symptoms, and a different reaction to treatments.  As time has gone on, though, I have had a strong feeling that there is more going on -- and I brought my suspicions to him.  I wish he could have told me I was wrong.

I am being referred to Swedish Medical Center for additional evaluation.  We think I may have developed Multiple System Atrophy (MSA). This is not good news.  Multiple System Atrophy (MSA) is a rare degenerative condition (historically called Shy Drager Syndrome). In MSA, more widespread neurological damage occurs than in the case of Parkinson’s.   When compared with Parkinson's Disease, Multiple System Atrophy affects more areas that control important autonomic functions such as heart rate, breathing, blood pressure, urination, digestion, body temperature, eye movements and sweating.  MSA does not usually respond as well to anti-Parkinson's medicines, if it responds at all.  Parkinson's Disease responds well to these medications, which helps doctors to make that diagnosis.  MSA progresses more quickly--patients have an average survival rate of 7-9 years, while Parkinson's Disease does not necessarily affect the longevity of the patient. 

I am a fan of knowledge -- the more you know, the more choices you have.  I have done due diligence in my research.  Now I need to wait for the medical world to share what more they may be able to tell me.  I have a wonderful group of people supporting and helping me -- my physical, occupational and speech therapists, my personal trainer (Rodney Soto), dear friends, and my family.  I am up for the challenge -- refuse to take it lying down.

This blog will be my way of documenting a journey I hadn't planned and have no map for.  Fasten your seat belts.