What Gets Us Through the Day?

We haven't missed a week day of our video chats since the ALS diagnosis.  Lots of times we spend an hour chatting about what we did the afternoon or evening before or talk about the plans for that day.  We ask questions about these events the next morning.  There always seems to be something going on between family situations, appointments or just for fun things.

This morning Carol joined late due to talking to another family member.  Tina and I had already been chatting for awhile.  She already had me in tears.  I sometimes wonder how we are going to get through this and then I am always drawn back to how strong Tina is.  I know that she has times of struggling.  I hope that in those times we can be STEELE strong for her.

This week, Tina had a zoom meeting with ALS and Homecare.  They were glad that homecare has started.  They would like to see a nurse coming to the house for two reasons.  A nurse could administer the medication that Tina had declined previously.  It was offered to her if she was willing to come to the hospital 40 minutes away and have it administered intravenously for 30 minutes.  This would be approximately a 2 hour commitment every day.  If Tina had a daily visit from a nurse then she could have this done at home.  This medication would add some years of life.  The other reason to have a nurse now is to have one in place for when she really needs one.  We all know that the medical field is stretched thin and getting a home nurse when you need one might be too much of a wait when it is really needed.

Through this conversation, they also advised her to move her google to where she would be sitting most of the time so that she could ask it to make phone calls if she ever fell and needed help.

Back to the reason for why tears came this morning.  In Tina's ALS meeting, they told her to make sure that she had her plans in order.  When I hear my baby sister say something like that it brings tears.  I know that none of us know when that time will come and we all need to be prepared.  These are the things that Tina is dealing with now.  She wants to share with us her wishes and we want to be able to support her in the decisions and in the discussion about it. We want to stand strong with her. We didn't start this talk yet and plan to get into it next week.

At the end of our video chat today, Carol sighed and said "What gets us through today?"  We needed to look at some positives.  We are surrounded by family.  We have a cottage booked for our summer "Sister Three" Vacation.  We are STEELE standing.

"I look to the mountains; where will my help come from?
My help will come from the LORD, who made heaven and earth."
Psalms 12:1-2

This week....

• Larry and Barb Wilson brought in a dinner for Tina and Austin.  Tina excitedly told me, "there was apple pie!"
• Casey Distefano, a childhood friend, came to visit.  She said that the blog is an "eye opener."
• Pastor Herb stopped in and dropped off something from the ladies at the church.
• Tina had a zoom meeting with ALS and Homecare.
• Janelle, Tina's homecare worker, has been there to help each day for one hour
• Mom came on Wednesday to do baking, cleaning and laundry and visit with us via our video chat.

Tina has also been working on some t-shirt ideas for our get together but I'm sure that we could open it up to anyone that would like to be STEELE standing with Tina.

What do you think?

Welcome to a couple of blog followers:

• Melissa Price, friend of Tina (and in Tina's words, "she's a sweetheart.")
• Corinne Brown, friend of mine whose mom had ALS and I know will be a great support.

We have had over 500 views of the blog this month.  Many have commented via facebook or private messages.  We appreciate all of your support and especially your prayers.

We are STEELE standing....thank you for standing with us!

Family Day

 Tina recently updated a life event on her Facebook Page.

It's still hard to grasp for me and I'm sure it was a shock for a lot of her friends when they read this.  Her update led to a lot of people commenting and sending her messages. Friends are letting her know that she is in their thoughts and prayers.  Some are offering to help in whatever way is needed.  Please continue to keep praying and sending her messages.

On the weekend, Tina's son, Anthony came to visit both days.  He has had a hard time with the diagnosis and needed time to digest the news.  It was so good that he has been there to visit now.  Tina loves to have family and friends come to visit.

Melissa Kelly, a church friend showed up on Sunday with scalloped potatoes, hams and veggies.  What a nice way to help and it sounds so delicious.  Our granddaughter has been checking the meal chain and wondering when she should go to Aunt Tina's to eat the great meals that are being delivered.

Tina has been feeling good and continues to be very positive. 

Today is Family Day!  It's a holiday for most but we didn't take a holiday from chatting even though we were all busy.

Carol just had her son, daughter-in-law and grandson get to their house on the island yesterday.  Tina was at the Salvation Army managing the move from one building to another.  I was in Lake Louise with my hubby and granddaughter.  Technology is amazing.  We weren't able to be together on Family Day in person but we could through a video chat. 

Make every day a Family Day.  We never know what tomorrow holds.  Send those virtual hugs if you can't do it in person.  We are counting down the days until we can be together.

From our family to yours...Happy Family Day!

We are STEELE Standing!

Physio and more

Earlier this week I said that it takes an army and it is amazing how this army just keeps adding new recruits.

Yesterday, the physiotherapist, Jennifer came to see Tina.  She showed Tina some exercises and helped her with some.  She thought Tina should be able to use a cane or a walker.  Tina's arms are very weak and not very mobile so it was hard to imagine how this would really work.  An occupational therapist is supposed to come some time and she may have different opinions.  Tina was left with a list of exercises and stretches to do.  On a very positive note, Tina keeps getting told that her legs are very strong.  She’s planning on keeping it that way so that she can be swimming in July!!

Jennifer will call next week and be back in two weeks to see how Tina is doing with everything.

A family friend stopped by with a generous meal card.  "Uncle" Ray as Tina calls him is one of the most kind, gentle and caring individual you will ever meet.  

Ray told them to let him know when that is used up and he will get them another one.  Sometimes you look at things happening in the world and you get a little mixed up and then an Uncle Ray steps in and you just know that there are a lot of good people letting their light shine and it just makes you smile.

Tina and Austin were treated to a lasagna dinner on Thursday night.  There is nothing better than a wonderful warm dinner delivered on a rainy day.  Thank you Kathleen for blessing Tina and her crew with a delicious meal.  Tina didn’t even know Kathleen…she is just a lady that wanted to help.  Now, that’s pretty amazing.  

I had an appointment on Friday morning during our usual morning chat time.  I decided that I didn’t want to miss it so I accepted the video chat when it came in.  Thankfully, I have an amazing hairstylist that enjoyed being a part of our chat!  Thanks Heather for being a good sport.

This morning chat thing has become a real habit…a good one.

Thank you to everyone who helped this week.  

We are STEELE Standing…thanks for standing with Tina!

Please keep praying! 🙏 

Providence Care

Tina spent Tuesday at Providence Care.  She was there for about 2.5 hours while different doctors came in to examine and explain things.  She was given a list of the doctors that would come in and they would cross it off after they had done their thing.

Dr. Melanson, the neurologist, checked in to see if there had been any changes.  The good news was that there weren't too many since her examination in December.  He was disappointed to hear that Tina was only getting one hour a day of homecare.  He had hoped that she would have access to more.

Dr. Melanson encouraged Tina to continue doing what she was doing.  The stretches are working. (Good work, Austin!)  She is also going to looking into massages to help keep the muscles soft.

Dr. Sauriol, physiatrist, and a resident did a complete assessment and reviewed all the symptoms.  They checked Tina's reflexes and examined her shoulder.  They told Tina that her shoulder shouldn't be hurting the way it was.  

Dr. Smith, physiatrist, was advised of the shoulder.  He said that the pain was caused by inflammation of her shoulder capsule. He put freezing in first and showed Tina how much more movement she had without the pain.  He then gave her a cortisone shot and there was almost immediate improvement and even more so this morning when we talked to her.

Dr. Ritzma runs the clinic.

Tina's breathing is really good at this point and will go back in July to see the respirologist to get a baseline.  Her oxygen level is 90.

She did not have to see the speech therapist or talk to any one in palliative care.  She chose not to talk to the spiritual care adviser as she has her own pastor.

She was advised that she does not currently qualify for the clinical trial due to not having a certain gene.  The doctor is hoping that the trial will open up broader to include her.

Tina has started Riluzole (Rilutek).  This medication will slow down the progress of ALS but it can sometimes take up to a year to kick in.  They offered another medicine but she would have to go everyday to the hospital (30+ minute drive) to have it administered intravenously.  She declined it.

Tina has noticed losing strength in her arms.  She also has some back pain.  The doctor advised her that it would be best for her to use THC for pain.  A normal go to is usually ibuprofen and too much of this can cause ulcers.  THC not only will help with the pain but helps to relax muscles.  

There was lots of information and meeting new doctors.  Tina was told to email with any questions.  It looks like the army just got a little larger.

***************

Earlier this week - 

On Monday, Amanda brought in a meal which they ate off for three days.  Tina was pretty excited about the meatballs!  Homecare started.  We already appreciate Mel who helped Tina shower and wash her hair.  She did a little bit of dusting and getting to know the lay out of things.  Roxane and Sandy (first cousins) stopped in and brought some treats.

Tuesday - no homecare, due to the timing not lining up with Tina's appointment in Kingston.

Wednesday - Tina received a nice card from Uncle Gary and Aunt Nora.  They included a few very generous gift cards to help Tina on her appointment or just for fun drives. 

Janelle, the home care, came and helped Tina shower and wash her hair and then did her nails.

Cathy Roberts Young and her son, Andrew came to visit.

Once again...thank you to all who are blessing Tina with meals, visits, cards and gifts.  You are all so appreciated.

Please keep praying as we all continue to STEELE stand with Tina!

It Takes an Army

They say it takes a village to raise a child.  When someone gets sick and can't do the things that they need to do...it takes an army.

July 18, 2020

We are so thankful to the army of people that have jumped in to help at this time.  

Jenn, Tina's niece (my daughter), has been there most Saturdays to help sort, organize or bring laughter or perhaps that was Emma's job.  Emma is Jenn's daughter.  She has done manicures and pedicures (not her favourite).  Jenn has helped with the paperwork for things that are needed and has gone to appointments to be the second ear. She has thought of and implemented a meal train.  She has also decided to the do the ALS walk this year in June.

Austin, Tina's son is the exercise guy.  He does not love this job but he is the one that helps Tina do her stretches.  When you have ALS the stretches are important but you only stretch enough and never to the point of it hurting.  The "no pain, no gain" rule is out the window for this disease.

Mom has been the regular Wednesday visitor.  She comes in the morning and works at doing laundry, housecleaning, baking and sometimes is even the hair washer.  Her and dad have also jumped in to help Tina with the physical part of her work at the Salvation Army.  Tina continues to organize and plan what needs to be done and then has her army complete the tasks.

Homecare has been offered and this too is appreciated.  It may not seem as much as we had hoped but in these times of short staffed and cutbacks we are happy to at least see someone come in and help even if it is for one hour a day.

There are so many people that have brought or are planning to bring meals.  There have been phone calls, messages and people coming to visit.  People have offered to help in so many ways and of course, the visits are so appreciated.

As her sisters, we have been encouraged by the army that have surrounded Tina and have offered to help in one way or another.  We too, appreciate those that have reached out to us.

We especially want to thank those who are praying for Tina.  

For Carol and I, we want to thank Tina for being so strong.  I know that it can't be easy.  We look at you in awe.  Stay strong little sis but remember that no matter what we are STEELE standing with you.

Video Chats, Agendas, Plans and Updates

Since January 25th, Carol, Tina and I have been connecting by video chat from 3 different time zones every Monday to Friday.  Some times the calls are short due to appointments or work and sometimes they last for an hour or more. We never seem to run out of things to say or plan.  

On Monday, Tina didn't come on and Carol and I chatted.  We checked and found out that she was on the phone with someone about support.  We connected a little later and found out that they were working on a plan to get her some homecare (or as I sometimes make a mistake and call it daycare).  We started discussing the idea of booking a cottage for a week in the summer to be able to be together in person.

I spent extra time with Tina getting the background about her symptoms and diagnosis.  One thing Tina has not lost is her sense of humour.  This is what she posted on her facebook page.

All day on Monday we were sending each other cottage ideas...lots of ideas!!  The secretary of the group completed a spreadsheet with the pros and cons.  We knew what we needed and were looking for what we wanted.

Tuesday, we added more cottages and got more confused. Tina was already dressed and when asked about it, Tina laughed and said, "I did it all by myself."  It apparently took her 30 minutes and it almost made her sick.  We take so many things for granted and can complain about so many little things. I hope today you take time to be thankful for even the little things.

7:15 a.m. for Carol, 8:15 a.m. for Penny and 
10:15 a.m. for Tina

After our video chat, Tina had a visit from Agnes, a friend from work.  She had given Tina some goodies at Christmas and now they were able to have a visit.  Wanda, another friend from work had previously visited and gave Tina a Money Tree plant.  In the afternoon, Pastor Herb came to check in on Tina. It is so nice when people come to visit.  What a blessing when people take the time from their busy lives to slow down and visit.  It is so appreciated.

On Wednesday, Tina got a call from Home Care while we were chatting.  She will be receiving help  every morning starting on Monday.  Mom was at Tina's while we were chatting.  She has been coming on Wednesday mornings to help with laundry, baking and cleaning.  We are so thankful that homecare is being provided.  

Notice the intense looks

On Thursday, we narrowed down our cottage search and it was booked.  Tina was able to be driven out in the snow to make sure it was a good choice and we are all excited about a sister adventure.  Sister time with a lake and hopefully a loon to sing us to sleep.  

Pictures taken from booking site

These days Tina is excited about 3 things:  making plans, having visitors and food delivery.  Shortly after the cottage was booked, meals were delivered by the Royal Coachman.  Tina called me right away to let me know how good they were.  Thank you to all those who are helping with meals.

Clint, one of our cousins, came to see Tina on Friday.  Clint is such a sweetheart and brought flowers and stayed for a visit.  It's been awhile since they have seen each other but were able to reconnect like when they were kids.  Clint has been staying with his brother, Carl who is going through chemo.

Today is Saturday...we don't video chat.  What was Tina up to?  She was at her job at the Salvation Army.  Mom and Dad were the army and Tina was being the drill sgt.  It's great that she is keeping busy (and keeping mom and dad busy too!) 

So sister time....every week day morning from BC, Alberta and Ontario.  There have been tears (usually from me), lots of laughs, planning and solving each other's problems.  Carol and I have our coffee in hand for the call and Tina is ready with the agenda.  The weekend seems strange now without these video chats and leaves us looking forward to Monday to reconnect.

Thanks for following along...we are STEELE STANDING!

Please keep praying!

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.

The Steele Family...We are STEELE Standing!

Who are we?  In order for us to figure that out we need to go back a few years.  When our dad was born, he was the youngest of 8 children in the Steele Family.  Our mother was the third youngest of thirteen children in her huge family.  Let's just say by the time we arrived on the scene we had LOTS of cousins.

Mom and Dad married young.  People that say young love doesn't last didn't know our parents.  Mom was only 16 and Dad was 20.  Yikes!  They celebrate 65 years of marriage this year.  I think they beat the odds of marriage lasting only 8 years by just a few decades.

Mom and Dad almost 39 years 

Carol, my older sister joined the family three years into their marriage.  In my eyes, Carol has always been really big but definitely not in stature.  She was my big sister (until I got taller).  She was smart and even jumped a grade in school. She was motivated and got a job young and has always been a hard worker.  She is a great wife, mom, daughter and especially a sister.  She was born in Ontario, lived in Saskatchewan and now resides in beautiful British Columbia.

Carol and Penny

Tina, my younger sister, is of course the baby of the family.  I still remember the day when my parents walked in the house with a pink blanket which happened to be wrapped around my baby sister.  When she got older and people would ask her her name, she would proudly say, "Tina, the weese."  No, she didn't have asthma.  Her name is actually, Tina Louise.  There were two reasons we didn't correct her; one was because it was cute and two, it was easier if you didn't cross her. :)  She's has always had lots of spunk which will do her really well through this journey.  Tina was born, raised and still lives in Ontario in the little home town, just blocks away from our parents.

Tina at 11 month!

I'm the middle child.  I often say that I was the forgotten one.  My younger sister has called me the perfect one.  I know that I am neither perfect, nor forgotten.  My name is Penny.  My family mostly calls me Pen.  My life has been full of adventures.  I now live in Alberta...rose country!  

Penny

Growing up in our home was fun.  In the winter, our dad built a rink in the backyard which sometimes had an igloo beside it.  Our parents had skidoos and even a caboose for us to ride in when we were younger.  Summers were full of camping, swimming and biking.  

There are so many stories to tell but I promised that I wouldn't use this blog to share all the secrets.  They might come out through the some of the blogs.  You just never know what my fingers may type.

It seems so long ago and the years have passed all too quickly.  The family increased by 7 grandchildren for our parents and 9 great grandchildren.  Things haven't always been easy.  There have been health scares and relationship issues and concerns for our children and grandchildren but we were left STEELE STANDING.  

Penny, Carol and Tina - 39 years ago

We have all found our prince charming and were looking forward to the happily ever after.  Our discussion before last Tuesday was more about retirement and plans for the next week.  There have been times in the past when one sister may have been upset with another.  There have been times when we may have felt closer to one more than the other.  These things happen in families but when the going gets tough, the Steele's get tougher.  Little things don't matter so much when you hear scary news from a doctor. 

Every morning at 8:15 a.m., (my time) I look forward to a video chat with my sisters.  Tina brings the humour and strength for us and sometimes the agenda. Carol brings the wisdom and great questions and I just enjoy the friendship that I have with my sisters.

We are going to walk Tina's journey with her because we know that through it we are STEELE STANDING.  I know the title of this blog is "I'm Still Standing" which refers to Tina but Carol and I are standing with her and I know that there are many others that are standing with her too.

When Tina asked me to document her journey I really didn't know how I could/would do it.  I thought once a week I would type an update and post it.  After a few nights of thinking, I decided that I would try and keep it more current.  I'll drive Tina crazy with questions!

Keep praying!

STEELE strong - STEELE standing!

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!