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!)