65 Years!

Quick Facts From 1957:

World Changing Event: The Soviet Union launched Sputnik, the first space satellite, starting the Space Race. The Top Song was All Shook Up by Elvis Presley Influential Songs include: The Banana Boat Song (Day-o) by Harry Belafonte and Wake Up Little Suzie by The Everly Brothers The Movies to Watch include An Affair to Remember, Jailhouse Rock, Gunfight at the O.K. Corral, 12 Angry Men, A Face in the Crowd, The Incredible Shrinking Man, Pal Joey, The Spirit of St. Louis, Old Yeller, and The Bridge on the River Kwai The Most Famous Person in America was probably Rock Hudson Notable books include: Atlas Shrugged by Ayn Rand and The Cat in the Hat by Dr. Seuss Price of 45 RPM single record in 1957: 79 cents Burger King Whopper: 37 cents US Life Expectancy: Males: 66.4 years, Females: 72.7 years Wham-O Company produced the 1st Frisbee, called the “Pluto Platter” until 1958. The Three-Point Seatbelt was invented by Volvo’s Nils Bohlin. Volvo let other car companies use the patent at no charge. The Funny TV Lady: Lucille Ball The Funny Late Show Host: Steve Allen The Baseball Hit(s): Richie Ashburn hit Alice Roth with a foul ball, breaking her nose, then hit her again her while she was on the stretcher.

from:  Quick Facts From 1957

Some of these things are interesting, some are kind of funny, some are a big "who cares" and some are even quite shocking....a whopper for 37 cents!  Really, none of them are as noteworthy as what happened in our family 65 years ago.

Mom and Dad with Aunt Juanita and Uncle Johnny
June 29, 1957

Before I get to the celebration of today, I need to catch up on a few days in Tina's journey.  It had been a few days since we had video chatted and boy, did she have a lot to say.

Let's step back in time to last week.

Friday - Janie (or Jane) came all the way from Tweed to spend the day with Tina.  She said that they had a great time.  Dad was a little disappointed when she showed up without tarts.  Of course, she didn't come empty handed.  Ron guessed right when he said that she would bring something with strawberries.  (Facebook gives hints!)  She brought  pineapple pistachio fluff, dill pickle salads, chicken pot pies (that Tina said were sooo good!) AND strawberry/rhubarb pie.

Janie also gave Tina a great idea.  We could take a baby monitor to the cottage so that if we need to put the baby sister to bed, Carol and I can party by the fire with the mosquitos.  

Saturday - Nancy D arrived for the day.  Tina said that they "had a blast."  They went to Giant Tiger to shop and she got her wardrobe for the cottage.  She bought a dress, a top, and 8 tank tops (every colour that they had!).  They found a bathing suit that she really liked.  The top was the right side but there wasn't the right size in the bottoms so they reluctantly had to leave the top behind.  (Remember this part for later in the blog.)

Sunday - Tina arrived a little late for church.  Tina was supposed to give her testimony but because of their tardiness they postponed it until next Sunday.  I will be checking in virtually to hear this.  I think you should be able to get to it through this link Wilton Church

Tina got to go for a drive and google maps didn't even know where they were.  Tina said, "I guess we know when we get to the end of the road."  Kind of like life.  We never know what is just around the corner for us but somehow we keep going and find our way back to where we should be.

Monday - Tina continues to have her homecare each morning and on Monday day and Thursday evening she has respite.  Kate, the respite worker is a keeper.  She did a manicure and pedicure for Tina.  I asked if we would have to do this at the cottage and she said, 'No, Kate will do it!"

The nurse came and told Tina that she was "the perfect patient."  The nurse will be coming to the cottage when we are there.  It will be nice to mean all the team of workers that have been there for her.

The Occupational Therapist came and Tina had her driving test.  WHAT!  She had to start on the ramp and drive a power wheelchair down.  She was then instructed to turn right, left, do a complete circle, stop, etc.  If she passed, then she would be qualified to have a power wheelchair.  10 out of 10!  She is already thinking about the possibilities.

Cathy R came from Belleville and brought butter tarts!  I've seen pictures of these and my mouth waters.  So what Janie didn't bring from Tweed, got delivered from Belleville!  Butter tart blessings!

Tina got a call from Nancy D.  She was in Kingston and found the bathing suit that Tina wanted and they had her size.  She wanted to know if Tina wanted it...and it was a big yes.  I'm glad that I'm gong shopping tomorrow because it sounds like Tina got all new duds for the cottage and I better not show up in my old rags.

Tuesday - Judy was back on duty.  She was there for the speech therapist appointment.  Tina has no problem speaking and we are hoping that she keeps her voice.  It's actually funny to even say that.  Do you know how any times growing up I wished that I could silenced her but now, it's different.  Keep talking!

Adam, the speech therapist also was giving instructions on how to swallow.  Tina has had a couple times of choking.  This is where my typing pauses and I take a breath.  This is Tina's journey and she wants the facts to be out there.  Choking is a very normal thing with ALS.  Adam and Tina discussed different things about choking.  They watched a video and he left instructions for others that are feeding Tina.  The food needs to be soft, juicy and easy to swallow.  He left 5 commandments and said that there will be more to follow.

Judy and Tina went for a drive and had lunch at Pita Pit.  

Geneva P., a wonderful lady from our home church, showed up with a lemon loaf.  She said that she had Tina's name on the fridge for awhile and wanted to bring something over to her.  There have been so many people showing love and concern to Tina through this time.

Wednesday - I'm almost caught up.  Jenn came to spend the day and brought Emma.  Emma will be spending the week with Tina.  Jenn was doing double duty.  Her grandma (Ron's mom) fell yesterday and broke her hip.  Jenn went to the hospital and visited with her and was working to keep the family all informed and using her connections in the Kingston Hospital to see when she would be transported there for surgery.

Tina, Austin, Jenn, Emma, Mom and Dad went to Tamworth to enjoy an anniversary lunch.  We hope to all celebrate at the cottage in a few weeks.

I apologize for the length of this blog.  Tina's life is way too busy to do a weekly blog and so I will try harder to do more entries so that you can read shorter updates more often.  I have to say that Carol and I are so encouraged by Tina's upbeat attitude.  She lifts us up when we get down.  

Thank you to all who have helped in any way this past week.  We appreciate those who spend time with Tina, brought food and snacks, picked up bathing suits in Kingston, etc.  We are encouraged by your comments, thoughts and prayers.

Your marriage has lasted almost as long as the average male in 1957.  Thanks for STEELE sticking together. Happy Anniversary Mom and Dad!  

We are STEELE Standing and before too long we will be flying.

4 Month Progression

I'm amazed to see the stats on this blog.  There are usually over 100 views on each post.  Most of these views are from Canada but there are a few from the States and a spattering from around the world.  I think most of us have a bit of a shock reaction to the reading because this is happening to Tina.  Others, may be interested in this disease that seems rare and yet has affected so many of us by knowing someone that has it or had it.  We currently have 19 actual followers to the blog (hi there, Nora, the most recent person to connect) but many others click on the link through facebook and leave encouraging comments to Tina and the family.

ALS is a disease that moves too quickly; robbing people of their mobility, speech, ability to swallow and eventually breath.  Let's just say, that we hate the disease!  It's cruel.  And then, there is Tina!  We chat in the mornings and she tells us what doctors, nurses, occupational and physio therapists have said.  We may gasp, sigh and even cry... and yet, she has a smile.  She throws a joke on facebook about tripping upstairs or tells us that she has not quit her job yet because if she gets healed she doesn't want to lose her seniority. She's one tough girl!

So...what has been shaking in Tina's world this week....lots!

On Tuesday, Judy came for the morning and then Tina went to Providence Care in Kingston for her check up with 3 doctors.  It was 4 months ago that they had been there.  When they were there last time, Tina was able to walk into the clinic and this time she was in the wheelchair.  Her left arm has always been the stronger one and now she has lost use of that too.  Four months ago, Tina could lift her knees to the counter top and now she can only lift her foot 3 or 4 inches off the ground.  Her ankles have gotten weaker. She is now fully dependent on people feeding her and needs to be careful of things that might choke her.  As I type this, it doesn't seem real that I am referring to my younger sister.

The doctor is looking into the new drug that I mentioned in my last post that could slow down the process, if effective.  At this point, the medication would not be covered under any plan and they aren't even sure how much it would cost since it just got approved last week.  Hopefully, the administering of the medication doesn't take as long as approvals do.  Tina won't even know if she is a candidate for this drug until the doctor calls with a plan.

They mentioned again about Tina needing the resting hand splint to try and keep her fingers and hand from curling more.  That's about $40 that isn't covered.

Freda (a church friend and work connection) brought a macaroni salad for the family.  Tina said that it was really good and she got a little excited telling us that it even had grapes in it.

On Wednesday, mom was on duty.  I was with my son and his wife when I chatted with mom and Tina.  We were working on getting their house ready to list for their big move next month.  The Respiratory Therapist came to give direction on the lung volume recruitment kit or cough assist.  This is used to increase lung volume and help to clear the chest.  She needs to use it in the morning and night and do 3 rotations with it.  This costs approximately $70 and was not covered by any plan.

She also needs a BiPAP machine that is also not covered and costs between $200 to $300.  When she gets this machine, it will be for sleeping.  She will wear a mask or nasal plugs that are connected to a ventilator.  The machine supplies air into her airways.  It almost lets her have a break from working to breathe through the night and this machine does it for her.

Nancy H. stopped in to pick up her dishes from the meal that she brought last week. Tina was excited when Nancy said that next time she would bring a meal and Ralph and they would have dinner with Tina.  What a blessing.

Today, Jenn came after homecare.  The nurse came to do her regular Thursday check in.  

Tina and Jenn were sitting out on the deck enjoying the warm Ontario weather during our video chat.  Carol was enjoying her sunshine too and keeping an eye on a little pup that likes to run and hide.  I stayed in out of the strong wind.

Jenn giving a demonstration of the Cough Assist

A month from today we will be sitting, hopefully comfortably, looking at White Lake.  While Carol and I are at the cottage with Tina, we will have our kids changing provinces.  Stephen and Kylie will be moving from Alberta to British Columbia and Xarra and Alex will be doing just the opposite.  

This post seems to have a lot to take in.  The progression of ALS is hard to watch but Tina's smiles and calmness helps us get through the news.  

We are STEELE Standing and as Nora commented on Tina's funny post on facebook, she "STEELE has her sense of humour."  

STEELE Standing...STEELE praying...STEELE smiling (as much as we can!)

Father STEELE, Awareness and Looking Forward

Yesterday was Father's Day and I missed putting up a post about dad.  Our dad is the youngest of 8 siblings.  The STEELE family only have two left standing, dad and Aunt June.  He even lost a brother, Uncle Pete to ALS.  Unfortunately ALS is not new to our family.

Dad and mom married in 1957.  Three years later, Carol was born.  I came along 3 years after that and Tina, four years after me.  Dad was always the one to keep the fun going.  He liked to get a baseball game going in the back yard, a quick drive to the quarry for a swim or a bike ride trip around town.  In the winter, we often had a backyard rink with sometimes an igloo that dad would build.  When the snow was right we would go to the golf course to go tobogganing.  He enjoyed taking us on all kinds of adventures.

Dad retired when he turned 60 after many years of working at Dupont.  Dad has always loved to visit with anyone that comes along.  His legs aren't great anymore but today he went strawberry picking.  His favourite place to be right now is in their sunroom and keep an eye on the neighbourhood.  

One of the funny things that we used to do with dad and still try sometimes is mention something to get dad to sing a song that goes with it.  For example, if we saw a yellow ribbon we would say, "Is that a yellow ribbon?"  Dad would usually start to sing, "Tie a yellow ribbon around the old oak tree."  Carol, Tina and I will have to try and think of some other things to throw out there when we get to the cottage to see if we can still get Dad singing.

Happy Father's Day to our STEELE Patriarch!

*******

This week Tina has lots of different people staying with her.  Today, she had her homecare worker, the nurse and Respite.  Mom and Dad stopped in and brought strawberries and chocolate.

Tomorrow, Judy will be there and then she will have to go to her appointment at Providence Care where she will see "all" the doctors again.

Wednesday, mom will be there.  Jenn will be there on Thursday.  Janie is coming on Friday and Saturday, Nancy D. will be there.  Thank you to all who are giving their time and spending time with Tina.

********

What Causes ALS?

There is no one thing that causes ALS. Rather, ALS is recognized as having multiple interacting causes that are likely based on changes in people’s genes, and possibly contribution of environmental factors. A number of genes have been identified as playing a role in the development of ALS. Through research, we are learning more about ALS and the multiple factors that may trigger its development.

Copied from ALS Society of Canada

*******

Counting down the days....one month from today Carol and I (along with Ron and Sarah) will be flying to Ontario.  Cottage time will start two days after that!  

Looking forward to that Sister Three time!  We so appreciate all of you STEELE Standing with us!

Appointments, Announcements and More

Monday was a busy day.  Homecare came and got Tina ready for the day.  Mom and Dad were there before Respite came.  Tina had put in an order for some cookies and they thought they might as well make it at Tina's and Dad could be there to visit and perhaps sample a cookie or two.

The nurse came and checked out her vitals and to see how she is doing.  The Occupational Therapist came.  She is going to check with ALS Canada to see the status of the stair lift.  They are also going to look into funding for a Power Lift Chair.  Tina has one right now that was provided by ALS Canada but it is very uncomfortable.  She found one that feels so much better.  Hopefully, ALS will cover some of the funding and if she gets a prescription from her doctor she won't have to pay taxes.  

Scott brought pizza over for supper.

On Tuesday, the day started as usual and then Judy came to be with Tina.  They went for a drive and stopped at the Cavalier Room in Kingston for lunch.  We all feel Judy is pretty amazing to spend time with Tina and she told me that, "I enjoy it."

When they got back home, Tina went to a lawyer's appointment.

On Wednesday, mom and dad drove Tina to Kingston to meet Jenn.  Side note...it was Jenn's birthday.  Tina had an appointment with Dr. Melanson, the neurologist.  They walked/rolled into the appointment and were asked "why are you here today?"  Tina told them that the office had called and made the appointment.  Dr. Melanson was the doctor that had given Tina the ALS diagnosis back in January.  He schedules a follow up appointment to go over all of the same things.  He told them that most people can not retain all the information after they are told that they have ALS.

He told them that there was some progression of the disease but nothing drastic.  He wanted to have the occupational therapist order a brace for her hand.  He was concerned about the swelling and curving.

He also told them that a new drug, Albrioza had just been approved 2 days ago in Canada.  This is only the third treatment for ALS that has been approved in 20 YEARS!  The doctor will be looking into this drug to see if Tina is a candidate for it.  Many times people are disqualified for a drug due to them being further along in the disease that the pharmaceutical has stipulated.  They are, of course, looking for positive results and and don't want someone to take the drug if there is already too much progression.  As a family member of someone with ALS....let's try anything and everything!

This morning, Mom and Dad were with Tina and it was super warm and humid in Ontario.  Tina needed to go inside because the weather was bothering her breathing but before she hung up she wanted me to see her pedicure that her new Respite worker had done for her.  Tonight Nancy H was surprising Tina with a great sounding casserole with homemade buns and an apple pie for dessert!  It makes my supper plans look a little weak.

Before I go into the good news, we want to thank Freda for bringing a great dinner on the weekend.  It was really appreciated and ENJOYED!

Good News Announcements

In Carol's family....James and Jen have their daughter, Taylor and her good friend on the island for a visit.

The family got to get out and spend some fun time and they take their fun pretty seriously.

James and Jen are also taking possession of their new home.  Carol will be sad when they move out but at least they won't be too far away.  Congrats James and Jen...looking forward to visiting you sometime in your new home.

Dustin just flew home from Ethiopia.  His job takes him all over the world.  Carol is so excited that Dustin and Katie's daughter, Alexis and her boyfriend will be coming to the island to visit in July.

Carol went to Xarra's yesterday and her little grandchild waved at her.  Ultrasounds sure are a lot clearer than they were 30 years ago.

Hi Baby!

In my family....new jobs are turning up.

Jenn was offered two different positions and chose to take the Ward Clerk in Surgical Screening.  This is a permanent part time position that will be at least 3 days a week.  She will only work days with no weekends or holidays. I'm sure that her kids will be happy to have more evenings with her. Congratulations!

Our son is changing his uniform. I'm a little sad that they will be moving provinces but am excited for their new adventure.  He has a great partner to explore new places with.  Wishing you all the best!

And Tina's boys - they continue to help in whatever way they can.  They are very much appreciated by the fam.

Help us keep the good news going.  Please post what happy thing is happening in your life right now so that we can celebrate with you!

 

We are STEELE Standing and we can't wait to hear what is happening in your life.                                                        

Appointments, Visits, Corrections and Awareness

On Wednesday, the physiotherapist came and liked the new stretches that Judy had found.  Way to go Judy!  While Tina was doing her stretches, Carol and I were exploring Waterton.

On Thursday, Mom and Dad took Tina to Kingston and met Jenn there.  Jenn took Tina into her pulmonary function test.  They then had an appointment with Dr. Fitzpatrick to go over the results of the test.

There was very little difference from her last breathing test.  The doctor said that there was a slight decrease but they were not concerned about it at all.

The doctor did suggest a "cough assist." This is a machine that blows air into the lungs and pulls it out quickly to clear mucus.  A Respiratory Therapist from Home Care will come and set the machine up and explain it all to Tina and whoever might be there that day.

She is scheduled for a follow up appointment in 6 weeks.  They were a little concerned about her bruising around her eyes after her fall.

They all made a trip to Costco before they made their way home.  It was a full day.

Meanwhile in Alberta, Carol and I called Hart n Hart to order our STEELE Standing sweaters and shirts.  We need to make sure that they are ready for our cottage time.

On Friday, Carol left for home.  It was so nice to have her here.  She got my gardens looking better than they have ever been.  We did chat for a bit while she was driving and said hi to cousin George who was visiting Tina.

I need to make a correction from my last post.  I thought that Tina had fallen later on Saturday but it was actually in the morning.  So after Tina smashes her face, she went on a road trip with cousin, Tammy.  Now that's one tough girl.

******

I got filled in on some more meals that had been delivered.  Thank you to:

• Thelma (friend) a for bring salads, deviled eggs and more
• Judy (cousin) always plans some kind of lunch and this week she brought subs from a Butcher Shop
• Nancy H (home church connection) brought homemade soup.
• Casey (friend) brought a meal.  I think it might have been chicken tacos.
• Dawn & Bert (pastors) - meat dish in a jar and a dessert

Thank you to all and if we missed anyone, we apologize and thank you too!

What are the types of ALS?

The most common form of ALS is called sporadic ALS, meaning the disease can affect anyone regardless of gender, ethnicity or age—although it most often affects people between the ages of 40 and 60.

The other type of ALS is called familial ALS, which means it is capable of being passed from a parent to his or her child. Approximately 5 to 10% of ALS cases are familial.

Regardless of whether someone has sporadic or familial ALS, 30% of all people with the disease have a form referred to as Bulbar ALS. In the early stages of Bulbar ALS, the motor neurons in the corticobulbar area of the brainstem are the first to be affected. This means that the muscles of the head, face and neck become paralyzed before muscles in other parts of the body.

Tina was told that she doesn't have the familial type but not really what she does have.  All we know is that it is not nice but she is STEELE Standing and we are standing with her.  Thanks for standing with us.  

Words cannot express how much it means to us when family and friends are willing to spend the day with Tina.  

Thanks for STEELE Standing with us.  Thanks to those that have or are planning to spend time with Tina.  Thanks for the meals and treats.  Thanks for praying. 

Back to Day Zero

 Well, it's back to day zero again....if we are counting how many days without incidences for Tina.  

On Saturday, Tina made her way to the washroom.  She is "usually" able to get there on her own.  On that day, something went wrong.  She fell and banged up her face pretty bad.  The result was a huge goose egg and two black eyes.  😥

Tina is pretty amazing though.  She doesn't lose her sense of humour.  She told us on Monday that she was never really good with eye shadow so this was a way of testing out a new colour.  The Respite worker was there when she told us and laughed and said "I love your sense of humour."  

We would like to have Tina sign an agreement when we go to the cottage that she will not have any falls or injuries while we are there.  Ron said that we just need to bubble wrap her.  Perhaps we could get one of these for the lake:

So, let's step back a few days to catch up on what else has been going on besides bumps and bruises.  On Saturday (before the fall), Tammy (a cousin) came to spend the day.  They had a great time.  They picked up pizza and headed back to Frizzell road to see Gary (Tammy's brother) and Denise.  They had a really nice day.  Thanks Tammy for sharing some of your time with Tina.

On Monday, Tina was back to her regular homecare.  Yes!  The majority of people that have come to help Tina have been more than amazing.  They show that they care and really want to help the people that they work with.  Tina's regular homecare worker, Janelle is Tina's angel.  She is caring and puts in the extra effort to braid her hair and make sure that she is comfortable before she leaves.  She has asked her not to be sick or take holidays! The Respite that came on Monday was new and was really good.  She worked around Tina and cleaned the house and took care of Tina's needs.  Tina is hoping that she will be back.  The nurse came to check Tina out and said that she will need to watch the lines under her eyes.  There is bleeding under the skin.

Today Judy was back for her regular Tuesday time with Tina.  The weather wasn't good enough for the convertible but Judy had been doing some research on some stretches that they might try.

Carol and I made the video chat from my house.  Yes, Carol and Augie came for a visit and what a blessing to have her her for a week.

We have done a little touring around my neighbourhood, enjoyed some meals and lots of coffee and tea and I put her to work on my gardens.  They look amazing!  We are having our Sister Two time and are looking forward to the Sister Three Cottage week.  Carol and I are hoping to order our STEELE Standing shirts today from HartnHart.  We noticed that Tina had her STEELE Standing shirt on when she fell.  

Tina has to go for her breathing test later this week.  Tina also joked about that.  Jenn will be going in with her and she just had her wisdom teeth out.  They will look like they have been in a brawl.  Tina has two black eyes and bruising and Jenn has swelling and could possibly have black eyes too.  They will be asking who won?

So to continue with more information in regards to ALS Awareness Month...

How ALS works in the body

Our brain is connected to our muscles through millions of specialized nerve cells, called motor neurons, which serve as our bodies’ internal wiring and enable us to move our bodies as we choose. Motor neurons work in pairs: an upper motor neuron in the brain extends to the brainstem at the back of the neck or the spinal cord, and a lower motor neuron extends from the brainstem or spinal cord to the muscle. The brain sends a signal along these motor neurons telling a muscle to contract.  This signal is an electrical impulse created by chemicals in our neurons.

In ALS, motor neurons gradually break down and die. This means that the brain can no longer communicate with the muscles of the body. As a result, the muscles become weak and eventually someone living with ALS will be unable to move them.

Taken from:  ALS Society of Canada

Once again, we can't thank you all enough for being there for Tina.  She continues and will continue to need care and people to come and visit.  We appreciate your support in whatever way you can help.  Thank you for sending her messages and for continuing to pray.  

Tina may have had another fall but she is STEELE Standing and we are too.

Jenn has updated the new meal train if you are interested in helping in this way.  You can click this link to pick a date:  Meal Train for Tina

ALS Awareness Month

What’s the response when you tell someone that your sister has ALS?

Most of the time it is, “I know someone that had/has that.”

Once in awhile, someone will say “what is that?”  That is one of the reasons that Tina wanted this blog.  She wanted people to walk beside her on her journey and see what ALS takes from you.  ALS, also gives in Tina’s case, so many wonderful support people who have helped and continued to help in so many ways.

This month I am going to copy some facts from ALS Canada so that we all can better understand this disease and how research and trials need to be done.  The facts are hard and cruel and much of it we would like to ignore but unfortunately it is happening to our sister.

About ALS

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

Copied from https://als.ca/what-is-als/about-als/

…..

Tina and mom were sitting outside this morning enjoying the sunshine in Ontario.  Tina has some concerns about our cottage time.  Will we be able to handle everything that needs to be done?  We are STEELE Standing, aren’t we?  We can do this and we will have fun trying.  Life isn’t always easy but as we support each other we can make good memories along the way.

Thank you for STEELE Standing with us!❤️