Category Archives: February 2011

Another Personal ALS Story

Discovering that my mom was experiencing changes in her body did not happen over night.  In fact, before she was diagnosed, she had been experiencing symptoms for about a year.  We believed it was just clumsiness.  Looking back, the day that she broke her foot was when it all began.  My mom was racing to get to the EPHS auditorium with her friend to see my sister perform in the talent show.  She slipped on a piece of ice & broke her foot as a result.  My mom wouldn’t be my mom if she didn’t sit through the entire show before realizing that something might be broken.  After getting a cast she felt as if she was not healing properly.  She eventually went back to work at Nordstrom, but didn’t feel quite right.  Next she went to Mexico with my sister for her spring break.  All throughout the trip, my mom’s foot felt weak & she was experiencing random tripping & falling.  Apparently she & my sister went parasailing & my sister was worried the entire time about how they were going to land back on the boat.  Of course my mom was not worried at all & had a great time.  Leave it to Jenna to do all of the worrying.

After Mexico, my mom headed back to work still feeling a little weak on her supposedly “healed” foot.  Nordstrom was doing a large renovation at the time, and my mom ended up tripping on some torn up carpet & broke her wrist this time.  Ugh!  Because of the severity of the break, my mom ended up with a titanium plate in her wrist & then developed a staff infection.  After being hospitalized & treated for the infection she was off to hand therapy.  This is when we started to notice a drastic change.  My mom was not getting the strength back in her hand that she had had before.  She also began to have a hard time pushing herself off of the floor if she sat down.  We blamed it on the wrist….but apparently other things were happening that we had no idea about.  Around this time my sister was graduating from high school & my mom was planning her graduation open house/party.  I had come home from North Carolina (where I was living at the time & between moves) to help her out.  My mom seemed especially worn out & I thought that she just didn’t enjoy throwing parties.  Anything involving creativity & planning was never especially loved by my mom…while I loved party planning! Don’t get me wrong, my mom loved to party though!  I remember ending up organizing most of the party because my mom was so worn out.  I distinctly remember one night when she asked me to look up the symptoms of MS.  I thought that my mom was crazy.  All of my life my mom was what you can call a “drama queen”.  If we ever said we had an ear ache…she thought it was cancer.  Etc.  So, after a wonderful graduation party for my sister, I headed out to Boston which was my new home at that time.  Over the next month or so, my mom really began to notice that her wrist was not healing.  She was feeling off balance & the random tripping continued & became more often.  At this point, she decided it was time to head to a neurologist.

I remember getting the phone call from my mom saying that they were thinking she may have ALS.  I had no idea what ALS was & immediately googled it.  After reading the definition, I knew that my mom could not have that.  What kind of a crazy idea was that?!  So, while I was in denial, my mom headed to the Mayo Clinic with my dad for some extensive testing.  Apparently the testing that they do is incredibly painful & emotionally draining.  When all of the tests were done, the doctor came in and told my mom that it was undoubtedly ALS (commonly referred to as Lou Gehrig’s Disease).  Looking back, I remember my mom telling me that the doctor was young & had a horrible bed side manner. He didn’t seem at all sincere or sorry about the completely life altering news he was giving my parents at the time.  He even said that there was no use trying any alternative therapies or changing diet and lifestyle.  He basically came across as “go home and get ready to die very soon”.  When my parents got home, my mom immediately called me.  I was hosting a party with my ex at the time & I remember getting that phone call…and my world turning upside down.  I was half in denial and half completely destroyed/devastated.  I couldn’t believe it.  My mom had never been sick a day in her life.  It just didn’t make any sense.  After that day, I headed to work as usual, but found myself staring blankly at my computer screen.  I sobbed & sobbed on my way home in my car.  I basically became a shell of a person.  I will write another time about coming to the decision to move home to help & all of the many challenges I faced personally & emotionally.

One important thing I want to come out of this story was what a rock my dad was.  He didn’t falter once.  He said “we are going to do everything in our power to treat this disease and slow it’s progression”.  Over these last few years we have tried and done everything.  Some things help & some don’t at all.  But one thing will always remain the same, we never give up the hope & believe that some day my mom really could be cured.  We don’t live each day as if it could be her last.  We live knowing that anything is possible & God is good.  I am not going to say that it hasn’t been a really tough road.  Because it has.  It has been impossibly hard at times.  But it has also given us wonderful times together as a family & proven that we will do anything for each other.

 

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When the dad is away, the ladies will play

Well, it has been about a week since I gave a decent entry.  Not that having you vote for my sister is not decent.  haha.  Thank you to all that voted BTW!  This last week has been pretty good.  I cannot even 100% remember everything that we have done.  Lets start with Friday.  My dad decided to go to Florida for 5 days for his yearly trip.  He wasn’t going to go this year because he feels he could spend a lot of time working on the house (he is still in the process of finishing the bathroom upstairs).  In the end, he couldn’t resist.  He spends his time down there visiting various family members that have homes (mostly my mom’s side) & spending one night on his own near the ocean.  So, Friday he left bright and early & from what we hear, he is having a great time.  My mom and I decided to go to the Mall of America to walk around the floors.  We figured that walking the mall would be close to the idea of walking outside.  It was nice to see what stores have changed since we worked there.  I would say that about 50% of them are new.  Crazy!  Since my dad is gone, I have a little bit more responsibililty….so it was back home for us.

Saturday we woke up to more snow.  Nothing new around here.  Jenna and Ross came over in the afternoon to help entertain us & Ross shoveled our sidewalk & driveway.  Thank you Ross!  I love having a brother-in-law we can rely on to help us out!

Today my sister, mom & I spent the day shopping.  What can be better than that?  We started at Home Goods (which was packed).  That is a store that really puts my wheelchair driving skills to good use.  Whenever I hear somebody break something in that store, I get scared that it was us.  But so far it hasn’t been !!!  Next it was off to the mall where Jenna couldn’t resist trying on a prom dress.  She was drawn to the pink & sparkles as usual.  Overall, it has been a wonderful weekend & my mom is in great spirits even though her man is gone.

Jenna re-living her High School days

That is about it for now.  For those of you that wonder, my mom does get a little sad when my dad leaves town.  It is very bitter-sweet because my mom used to always travel to FL with my dad every year.  Her dad lives down there….and we have so many wonderful family memories in Florida.  My mom is extremely supportive (as we all are) that my dad get a break.  We will always wish that we could take a family vacation together, but that is one of the challenges my family will always face.  I am proud of my mom for being so supportive & understanding.  She will forever have the short end of the stick in the vacation regard…..and I am so thankful for how encouraging she is that we all get the breaks we need.  My mom rocks!

Prayer for Julie:  Pray for continued “good health”.  She seems to be doing excellent with energy & immunity these days!  Lets keep it going!

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Happy Birthday Dad!

Today my dad turns 64!  We didn’t have too much planned, so Jenna made home-made lasagna.  Jenna NEVER cooks so this was a pretty big deal!  We also had a huge snow storm today, so my dad had to drive Jenna home.  Here is a little video from the day!

On Friday my friend Dana & I went down to Iowa for the night to see our friend Kate.  We had a great dinner at a Mongolian Grill Restaurant & then came home for chat time & much-needed sleepy time.  It was the perfect evening & exactly what we all needed.  Jenna & dad did a great job with my mom….so I had nothing to worry about.  Here is a teeny tiny video of Dana & I on the road.

Saturday evening my mom and I went to the Swarm game.  Our Godmother Mary & Jenna’s hubby Ross came too.  We lost (which was a huge bummer) but it was close!  Jenna’s dental office was there too.  I know that she was excited they all came!

 

Jenna found Ross for a quick hug

Jenna & Mama Jules

 

Here is the video of one of her dances from that night!

And that pretty much sums up our weekend!  I am forever grateful that I was able to get out of town…and the weather held out.  I am doing a girls weekend in a couple of weeks, and it was a great re-fresher for my dad.  Thank you dad & Jenna!

Prayer for Julie: Pray for a reduction in phlegm.  She has been pretty gunky lately & we have had to stay pretty on top of it.

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What a Week!

The weather in the “The Prairie” has been unbelievable!  My mom and I have had an amazing week….and there is a definite shift in our spirits.  I hope this weather can hold!  I am sure we will still see more snowflakes in our future though.

Tuesday was really fun for us because my cousin Lindsay brought her new baby Sylvia over.  It was our first meeting…and she is such a cutie.  We placed her in bed with my mom & she was happy as can be.  It was fun for my mom to get to hold her.  I also made a little video….so here you go!

 

Mom, Lindsay & baby

 

Yesterday my mom & I stopped over at my sister’s house for a visit.  It so happened that her mother-in-law stopped over at the same time.  So, we all had a nice visit.  After that my mom & I stopped at Von Maur to get some birthday presents for our friends.  The salesperson we were working with told us how special it was to always see us there together & how she misses her mom every day.  I do believe that I even saw a tear in her eye.   You just never know when you will touch somebody’s life….. and I love that!

Today we took our friend Amy out for a birthday lunch.  HAPPY BIRTHDAY AMY!  We love you!  We were up early enough to go to D’Brians (they close at 2).  D’Brians is one of our favorite places to eat in Eden Prairie, but they close after lunch.  If you have never been…we highly recommend it!  They have awesome salads, soups & sandwiches.  Yummo!  After that we stopped at Costco & played around for a bit.

 

Costco with Amy!

 

Tomorrow I head to IA with my friend Dana, to visit our friend Kate.  The weather is even nicer down there….so I can’t wait!

As always, thanks for checking in!

prayer for Julie:  Pray for no complications while I am away this weekend.  Even though I know Jenna & my dad can handle anything!

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Light at the end of a LONG WINTER

Another week has passed caring for my “mama Jules”.  We managed to get out and get haircuts this week.  My mom has nice short hair which is awesome since it makes it very easy for me to manage.  Since she is taking so many vitamins & nutrients, her hair grows like a weed.  My cousin (who manages a salon in St. Anthony) has been on maternity leave…so my mom’s hair had become a little bit over grown.  And like I always say….”if she don’t look good, we don’t look good”.  My cousin has mastered the art of cutting my mom’s hair in her wheelchair.  She used to come to our house to do it, but my mom enjoys having any reason to get out and run an errand.  Haircuts can be very tricky when you cannot move, so we are thankful to have my cousin Lindsay share her gift with us.

Other than haircuts, we did our usual routine this last week.  Bio-feedback, visitors & lots of reading.  I had my book club on Wednesday…which is always a fun girlie night.  Jenna & dad both gave me nights off & mom and I stayed in a lot rather than battle the cold outside.  The tides are turning here in MN…and we could not be more grateful.  It is in the 30’s here people!!!  I am heading to IA next weekend, and I am told it could reach 60 there.  I am so excited I could scream!  There is a light at the end of this very long & dreary winter.  I am beginning to have that glimmer of hope.

Thank you to everybody that has commented and emailed me about the recent entry I posted.  I am glad that our story touched so many of you.  I have a million other stories…and I look forward to sharing them with you in the future.  Living with ALS is something that there is no rule book for.  The disease affects every person differently…so it is very hard to compare notes & share our “tricks of the trade”.  It has been a learning process all along the way.  Now that my mom’s body appears to be done with the huge changes, we have a sense of normalcy around here.  It may not seem normal to anybody else…but it is our families “normal”.  It has felt that way for a couple of years now…and it is great to have a regular routine.

I hope that everybody has had a peaceful Sunday & I will chat with you soon!

Prayer for Julie: Pray for continued strength and energy.  We have been very pleased with the strength in her facial muscles these last couple of weeks :).

Jenna & mom on one of our walks last year. Something to look forward to!

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A personal Story…….

 

Picture of my mom & family after her decision to go on a ventilator

 

 

I thought that I would begin sharing personal ALS stories from my family’s experiences.  We have had many personal times of triumph & many times of sadness.  All of them have shaped my family into what it is today.  Today I wanted to write about the time in our lives when my mom decided to get a tracheotomy and go on a ventilator.

For a period of time (about 6 months) my sister, dad & I had been staying up around the clock in shifts to watch my mom sleep through the night.  It had gotten to the point where we were all scared that she would choke on her phlegm…and nobody would be awake to help her.  My mom was especially terrified with the thought of her life ending that way.  She had so much fight left in her.  Over the years we had heard so many negative things about going on a ventilator.  Doctors were always very quick to share their opinions on my mom and all of us.  They often suggested that a life would not be worth living with ALS & people always choose the fastest way out.  We just didn’t believe that.  We are a very unconventional family, and knew that we could do it.  We figured that we had about a year before we had to make that decision, and then life took a tough turn for all of us.

I was giving my mom breakfast in her room.  My dad had gone to work & I believe that my sister was catching up on her sleep.  Jenna had decided to take off a semester from college to help our family.  At that point, our plan with her didn’t go much further than that.  It was day-to-day around our house.  My mom told me that she was having a hard time breathing.  Now that I look back, these were probably the last words that I ever heard her speak.  I checked her heart rate & it was racing at about 150.  Her oxygen saturation was low, and I decided that we needed to go to the emergency room.  I figured that I would take her thinking it was pneumonia & she just needed antibiotics.  I called my dad & through the course of the conversation my mom began to look really distressed.  My sister was up by now & didn’t know if my plan to take mom to the ER myself was a good idea.  My dad decided to come home & when he arrived they made the decision to call an ambulance ( I was still thinking I could drive my mom myself & didn’t want to stir up the neighborhood).  In the end the ambulance was the best idea.  Plus you don’t have to wait in the waiting room…you get in right away!

After arriving we spent about 6 hours sitting in a little room while they kept giving my mom Ativan to try to calm her heart rate & ran a bunch of tests.  In the end, it was determined that my mom was fighting several infections in her blood stream & urinary tract.  It was told to us later by my mom that she does not remember anything from the point we left her bedroom until several days later.  Once she was checked into intensive care, it was determined that a breathing tube needed to be placed down her throat because her breathing was being compromised.  My sister’s reaction to this news was devastating.  I remember having to bring her down the hall while she sobbed & sobbed.  I knew that my time to cry would come later, and I needed to stay strong for her.  And besides, there was always the chance that we would be able to remove the breathing tube a few days later when my mom was better.

Over the next couple of days my mom was heavily sedated because of the pain of the tube.  Her dad had flown in from FL and her family was constantly in her room and at her bedside.  Jenna and I were spending the nights sleeping in the hospital room with our mom on chairs that were not very comfortable.  We let our dad go home & get much-needed sleep because he still needed to go to work since we didn’t know how long my mom would be in the hospital.  His insurance has been wonderful….and boy did we need it!  About 3 days later they tried removing her breathing tube…and that didn’t go well at all.  Apparently a person with ALS has muscles that atrophy quickly when not in use.  Since we were not able to remove the tube, we now had to made the dreaded decision.  To trach or not to trach?  Luckily we had been smart and created a living will for my mom before all of this happened.  She had clearly made the decision (on her own might I add) that when the time came, a tracheostomy would be her decision.  We were all in shock that the decision came so quickly, but we knew what had to happen.

After the trach procedure had been done, we realized quite quickly, this trach thing isn’t so bad!  All of the things we had previously worried about (like my mom choking) were quickly put at ease.  We now had the ability to suction down her trach tube and pull out all of the gunky stuff that she had previously been terrified about choking on.  And another huge plus, we were able to SLEEP AGAIN!!!!  The ventilator that she is on will alarm to tell us if anything is clogging her airway or compromising her breathing.  We suddenly had a lot of stress taken off of our shoulders & we had never even thought about the new benefits.  One immediate downfall was the fact that my mother could no longer speak.  We had to quickly learn a new method of spelling through blinking.  My mom took to it right away & that is how we have spoken ever since.

Once the tracheotomy had been done, we had to look at how to move forward as a family. Our next step was to convince the doctors & social workers that we could take care of our mom on our own.  The medical company we were using said that they had never sent a patient home with family members versus going to a care facility.  Over the next few days we learned how to use the ventilator, clean my mom’s trach tube & change her inner canula.  We were determined to bring my mom home & take care of her.  Another change that we made was moving a hospital bed into our living room so she could be in the center of all the action.  It would no longer be possible to bring her upstairs since she was attached to a ventilator.  Again, this turned out to be a good thing.  My mom no longer felt secluded & we all learned to party around her.  She always knows what is going on, and that is the way that she likes it!

Overall we spent about 4 weeks in the hospital fighting infection & transitioning to life on a ventilator.  It was a very emotional & sometimes terrifying time in our lives.  Our world felt as if it was turned upside down over night, but in the end, the changes we made had a positive impact on everybody that lived at home.  My mom has not been hospitalized since, and it has been about 3 1/2 years now.  We take turns sleeping on the couch in the living room at night to be with her.  Luckily our couches are amazingly comfortable & now looking a little worn out….but I love them!  I get most of the nights of the week on the couch, but that is ok by me.  Every night I sleep near my mom, I find the gentle breathing sound of the ventilator soothing.  It is that sound that reminds me how thankful I/we are to still have her with us.  She is such a strong and amazing woman.  The ventilator decision was such a positive decision for her and my family.  She has since seen my sister get engaged, helped plan a wedding, got to see her say her “I do’s,    spent time with all of her family, seen all of her friends, she attends the ALS walk every year, was there for my dad when he lost his mother, was there for my uncle when he lost his wife to cancer, was there for one of her best friends when she lost her battle with breast cancer.  And in the words of my mother, she has truly learned the meaning of the phrase “everyday is precious”.

 

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Here you go!

Happy Super Bowl everybody!  I can’t say that I even picked a team to cheer for this year.  I am proud of Aaron Rodgers for getting his time in the spotlight.  Brett Farve who?  haha.  I was able to squeeze some time away & watch the game with my friends Dana & Aaron.  Their little boy decided that he didn’t want to go to bed, so I was able to see the little guy for a bit.  My dad & mom stayed home & watched the game together.  Luckily my mom loves football, so I don’t think that she even noticed I was gone.  Yay!

Saturday my mom & I went to see the fighter with our friend Amy &  Jenna.  It isn’t the type of movie we would normally see (we are all about romantic comedies & dramas lately) but with all of the Oscar nominations, we thought we would check it out.  It was really good & GREAT acting.  We have become quite the movie goers this season.  It is a great escape from being locked up in the house.  Aside from that, mom and I have been reading a ton & watching a lot of old seasons of “Big Brother”.  We have finished seasons 4, 5 & are now on 6.  I finally realized the other day that the reality show takes place in the summertime & there is lots of footage of people hanging outside in the sun.  This might be a large reason we enjoy watching it so much right now.  I know that I am rambling….but it was my “light bulb” moment of the week.  🙂

My mom’s health has been doing well over all.  We deal with the usual phlegm every day & sometimes her eyes get really tired.  Especially in the sunlight.  I would say that she wears her sunglasses more than she did this time last time.  She still does a pretty good job spelling by blinking though.  She and I are so in sync with each other, that I have become an excellent mind reader.  Her outlook has been very good considering the cabin fever we sometimes experience as well.  She still looks very forward to our visits from Jenna & from her friends.  In fact, her friend Jane was just over!

I will be going on my break shortly….so I thought I would get a quick entry in.  All is well over here at “Casa De Eagle”.  We have some things on the schedule this week, so we should be getting outside a bunch.  Go team!

Oh, and my relationship with the tread mill is still going strong (for those that have been wondering).  I have been staying up way too late though.  I guess that I am getting a little too much energy!

Good evening to all!

Prayer for Julie: Pray for continued strength & energy.

Vintage Pic!

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Trip Down Memory Lane

We have been in the house so much this week, that I really don’t have too much to share.  Monday was freezing cold, Tuesday the storm doors were completely covered in ice & there was no way we could get them open, Wednesday we had to hire a company to remove snow & ice from our roof  and today our friend Amy came over!  It was fun to see the guys up on our roof.  They were in waist deep snow.  In all of the years my family has lived here….we have NEVER had to hire somebody to take the snow down.  This winter is flat-out BRUTAL!!  I have enjoyed seeing some of my Chicago friend’s pictures from their blizzard on Facebook.  It looks like all areas of the country have suffered at one point or another lately.  With unexpected weather, comes unexpected expenses. Booooo! We had a few other visitors thrown in during those days, but that pretty much sums us up. Oh, and Jenna came to give me the night off on Tuesday.  Since I have had some down time, I decided to make photo collages!  You can thank me later! 🙂

I thought those pictures of my mom growing up were pretty cute.  I cut her date to the dances out of the pictures so my dad wouldn’t get jealous.  Haha.  J/K.  Hair looked like it was so much fun in the 50’s & 60’s.  I can only imagine what it was like to be growing up in those decades.  I do have a lot of fond memories growing up in the 80’s though.  Oooh.  It might be time for a Kelly 80’s hair collage!  Just kidding…..I would never share those! Here are more of Mama Jules instead.

Ok, that is about all for today.  That is all I can come up with!  Feel free to give me some blogging ideas.  Is there anything that you would like to know about our day-to-day life?  Want to know what kind of toothpaste my mom uses?  Want to know what is in her yummy food?  Want to know if she actually enjoys being stuck in the house with me?  hehe.  I am your girl!

Prayer for Julie: Pray for continued strength and energy

 

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