Thankful For The Cottage

STEELE Standing

We survived last night’s storm and even kept our hydro this time. We were thankful for the girls this morning who jumped in to help with moving Tina around.

Sarah helped Emma with the exercises.  They usually take about 30 to 45 minutes and are supposed to be done twice a day. Sarah made sure the stretch was good.  She pushed until her nose touched Tina’s finger and then she knew the stretch was good enough.

After breakfast, Tina asked us to all write down on a piece of paper what we are thankful for and then she would read them and we had to guess who wrote each one.  Tina couldn’t write hers so we did it for her.

Emma and I went for a morning swim.  It was a cooler morning and quite windy but the water was super warm.

The homecare worker, Adrianne came this morning and gave Tina her bath.  Shortly after that Angela, the nurse came for check in.  It’s great that the cottage is so close so that Tina can keep up with her routine…it certainly is a busy one.

Dad and Ron came for lunch.  I think they brought more food than they ate.

After lunch, Kate came and brought her little sweet girl, Willow.  She enjoyed the water for a bit. 

And then Willow got to work on Tina’s nails.

She really did a great job (actually Kate did the manicure) and Tina really enjoys this little bit of pampering.  We spent the rest of the evening with a little swim and then watched some home videos.  We smiled a little and laughed a lot.  There are lots of memories hidden in those old pictures and videos.

Tina had a full day of visitors and is a little more tired than she has been.  She sleeps in her chair that was brought from her house.  They have been experiencing with the sleep assist machine to make sure there is enough moisture and not too much.  Tina tires easily but doesn’t sleep too much through the day.  She can move a little freer right after morning exercises but stiffens up through the day after sitting in one position.  Her food needs to be soft and moist or she can choke.  This disease robs so much from a person but so far it hasn’t taken Tina’s positive attitude and that means a lot.

We are STEELE Standing and STEELE hoping and praying for a miracle.

Thanks for standing with us!

Tears are Words Too Painful for a Broken Heart 💔 to Speak

Sometimes it is just those days.  There are too many circumstances and thoughts to be able to process.  It’s those days that tears come easy and often.

Yesterday, Tina initiated our morning “Sister Three” chat.  It felt so good to be able to actually connect again.  Janelle had already been there for the one hour of home care.  Mom was busy around the house.  The Occupational Therapist arrived and cut our morning chat short but at least we were able to talk for a bit.

Tina is feeling better but still a little congested and coughs when she talks too much.  Her nerves are raw.  On nice days she just wants to get outside.  We take it for granted when we want to go for a walk.  Tina has to wait for someone to take her now.

This morning, Tina once again started the call.  It is so good to see her looking better. Thelma is spending the day with her today.  We are thankful for the many who have offered to help in any way.  Spending a day visiting is amazing.  

Tina shared with us some of the things that she has been feeling and said that she felt guilty about it because of everything that Carol has gone through.  We agreed that we all have a lot going on.  Life is hard but together we are STEELE Standing.

…..

For Carol…most of her family has left and the house is a little quieter.  They are all grieving and it’s hard.

Carol picked up her new puppy yesterday.  Brendan, Mike’s son, said “it’s the little friend of comfort that you need right now.”

Carol has been overwhelmed with the generosity of so many during this time.  Two of the young boys in the crowd, Cohen and Tyler, wondered how everyone was going to get fed.  At one time there were 26 people.  Food just kept coming in.  Blessings come from all directions and at just the right time.

…..

For me…Ron’s mom has been in and out of the hospital with pneumonia but sounded better today.  They may release her to go back home later today.

And our son had to say goodbye to his sweet dog yesterday.  Tanker was a wild dog running on a reserve in the Yukon when Stephen adopted him. He became the comfort dog for many.  He seemed to sense when people needed a dog hug and he could settle the other dogs down with one growl.

So, we all have a lot going on and I know that everyone does but we are better together and stronger when we can talk about it.  We are STEELE Standing.  We love that you are standing with us and we appreciate your prayers and words of comfort.  

How did we get here?

 Before we catch up to how Tina is today we need to go back almost one year.  

In March of last year, Tina was working at the Metro and she starting dropping cans.  This was the first sign of her noticing that something was not right.  She went to her doctor's and saw a resident.  They did reflex tests and determined that nothing was wrong. There were inflammatory markers in her blood work.

Tina continued to work.

In the summer, Tina's shoulders stiffened.  She went back to the doctor's and saw another resident. This time, they suspected a torn rotator cuff.  They ordered an x-ray and a CT scan.  They didn't see anything in the results but thought it might be carpal tunnel.  She wore a brace on her wrist for awhile.  Tina noticed a slight tremor in her finger and thought that she might have Parkinson's.

Tina was put on the self check-out area at work because she could no longer ring people through at the regular line.  She continued to keep busy with helping out wherever she could and even had my grandchildren for a visit and kept them amused.  She had a different activity planned for every day that week.

By the fall things were changing again.  On September 18, Tina was helping with a food give away.  She was coming out of the church and fell forward.  She couldn't stop the fall because of her arms not moving.  She went to the hospital and the result was a broken finger, scrapes and bruises.  When her appointment came to have the cast removed  in October (which she had already removed), she got to actually see her own doctor.  Her doctor immediately realized that something was not right.  Tina asked the doctor, "can you tell me that it is not ALS?"  The doctor said that she could not say that but would send her to a neurologist. 

In October, Tina tripped up the stairs to her house but was caught before falling right down.  In November, she was working at the Salvation Army and bent down and was too unsteady to be able to get up and fell and hit her head.  She fell in her own house in the hot tub room and hit her head.  

She continued to work and organize help for the Salvation Army.

Tina went to see Dr. Mercier, a neurologist and he referred her to Dr. Melanson, another neurologist.  On December 2nd, she was poked and prodded.  Her blood work consisted of 10 vials of blood.  They did a nerve conduction study and a EMG.  An EMG is short for Electromyogram.  A needle electrode is inserted through your skin into various muscles.  The test evaluates the electrical activity of muscles.  She had previously had a MRI done. 

On January 25, Dr. Melanson told Tina the diagnoses...ALS.

Tina is now on disability but is still working at the Salvation Army.  She is always looking to keep busy with whatever she is able to do.  

She is STEELE standing!

This post is a quick catch up of a year of Tina discovering her body not working right and finding the doctors to give her the answer that we didn't want to hear.

January 25, 2022

That day was the day that made our suspicions real.  It was the day when we decided to try and change our fear into faith.  It was the day when our younger sister had her appointment with the neurologist.  She had already been poked and prodded.  She had been asked questions and more questions.  She knew before all of us; even before the doctor said the words.

“You have ALS.”

When you hear the diagnosis, some may cry (that’s me); some may say “what do we do?” (that’s my older sister) and then there is my younger sister.  She sat in that office and said “I’m going to have the Stephen Hawking ALS.” 

Stephen Hawking was diagnosed with ALS at age 21.  He was given a few years to live.  He died at age 76.  

We’ve had one week to have this settle into our minds.  We have decided since we live in three different provinces in Canada that we will enjoy a video chat each morning when we can.  My younger sister said this morning that she is hooked and I am too.

Yesterday, my sister asked me to document her journey. I’ve chosen this platform to do that.  I hope that people will be able to see the strength in her through my posts.  

So, who are we.  We are the Steele sisters.  Carol, the oldest, Tina, the youngest and I’m Penny, the middle one.  In my next post I want to share a little about who we are but for now, we are STEELE standing!