Isabel's Ride-abouts

Dear Family and Friends

This week has been a good one!

One good day has stretched into two and now to eight.  Mum has been regularly "off the respirator" for up to six hours at a time for five consecutive days.  This means that the respirator is shut off for six hours a day and Mum breathes on her own with only a trach mask of humidity and some oxygen.  For the remaining 18 hours a day, Mum breathes primarily on her own with the respirator providing "some puffs of air" to expand her lungs.  While off the respirator and with some support of oxygen and humidity through the trach mask, Mum has managed physiotherapy which has included range of motion movements in bed, sitting on the side of her bed for up to 10 minutes, standing with help, and sitting in her chair for up to three hours.  For someone who has been in bed and dependent on a respirator to breathe for 2.5 months, this is progress!

This week, Mum's dynamo lead cheerleader physiotherapist returned from holidays, took one session to assess Mum's progress, and declared her breathing to be stable enough to go for a "ride-about" around the ward.  So Mum was able with the support of oxygen to leave "the four walls" of her room and take a wheelchair trip courtesy of the two physios who pushed her around the ward.  Nurses from all over the ward cheered "YEA, ISABEL!!!" as she sailed by.

While on the ride-about, Mum was able to greet the other West Nile Virus Neurological Syndrome patient at her door with a "thumbs-up".  The other woman waved back to cheer on Mum!  It was a moving moment!  Mum has been very interested in the stories of other WNVNS survivors but this was the first in-person "meet and greet".

Although we continue to live with the sobering reality of Mum's debilitating fatigue, inability to speak, and severely compromised muscular and neurological systems, we are grateful for these consistently positive eight days.  Despite the phenomenal fatigue that is common to all WNVNS patients, Mum sleeps little during the day.  Thus your letters and cards and phone calls continue to be essential to her well-being.  Connections with Mum's wide community are so important to sustain us ALL during the long hospital days.

Each week, we receive messages from Mum's broad community of friends from the many different decades of her life.  New people call and write as news continues to spread of her illness and recovery.  We continue to be amazed by Mum's sphere of influence, and she --  and we --  are so grateful that you take time to phone and write.

In gratitude and hope, as ever,

Janet, Nancy, and Catherine

The Warmth of Autumn Colours

Hello Family and Friends

Isabel's Marathon to wean herself from the respirator with support
from a variety of cheerleaders is taking place in a room filled with
colour. Strings of autumn leaves hang on the curtains. A large
orange bristle-board calendar created by Mary and Josh and covered
with 93 stickers is on Grannie's wall marking special days including
birthdays. Photo boards and art creations from all the grand-kids,
Mum's young friends from Abernethy, and grand-nieces and grand-
nephews cover another part of a wall. An Abernethy friend has sent
two large quilted wall hangings -- one with falling leaves; the other
of filled jam jars. Strings of your cards hang in different parts of
the room. A teddy bear peers out from behind a gigantic pink clock.
Mum's CD player plays a collection of spiritual, Scottish (bagpipes,
too!), and easy listening music. Mum has a collection of bright
coloured fleece blankets -- in maroons, corals, and brown-cream-coral
stripes.

In this midst of this created beauty, Isabel's marathon includes time
on and off the respirator, the flexes and stretches of physio, and
time sitting supported in a chair surveying all she can see out her
door. Mum has three neighbours in the nearby rooms. All four rooms
are designed for persons who need respirators to breathe. Each person
including one other West Nile Neurological Syndrome patient is a long
time respirator user.

There are a lot of Marathon checkpoints still to go. Thank you --
week after week -- for hanging in with us and being Mum's cheering
section. Mum wears her running shoes for physio every time she is up
and as the therapists or nurses help her move to her chair. A good
grip and feet solid on the ground are important whether one is
training for one mile -- or twenty-six.

Blessings of Autumn colours from us back to you,
Janet, Nancy & Catherine

Training for the Marathon

Dear Friends and Family

This week Isabel had a consultation with a respiratory specialist who
described her current work as Training for a Marathon. We used that
image before on the blog, and it is appropriate to use it again.

A marathon is 26.2 miles. Consider yourself. Imagine you -- any one
of us -- training to run 26 miles -- and then running it successfully.

On some days of training, you run a comfortable distance -- one with
which your body is comfortable. Some days you push harder -- mind
over matter -- what feels beyond your means. Other days you rest.

That's exactly what Mum is doing. The marathon that Mum is training
for is to wean herself from the respirator so that she can breathe on
her own.

This process will take weeks -- perhaps months. This is Isabel's
marathon. Varied pacing. Comfort; then the push beyond what feels
possible; then rest. One day at a time -- yet with your mind always
focused on a long-term goal -- 26 gruelling miles later.

We - and YOU -- are her cheering section. You send encouragement and
good cheer through your letters and e-mails. You are like spectators
at the marathon checkpoints offering a fitness drink, a power bar,
and a cheer of "You can do it, Isabel!"

Your messages also bring much cheer to us. The days are long in the
hospital and we are always glad of news of the outside world -- and
your encouraging words to us all.

Despite the huge compromises to her physical ability, Mum does not
miss a beat! She reminds us of things we forget to do, and asks
about family and friends through her letter board.

Mum has a steel-trap mind. Nancy told her in early August that she
had a speech to do this coming weekend. Mum has asked Nancy through
her letter-board every day in the last week about the speech.
FINALLY, today, Nancy brought her speech in to practice in front of
Mum! Shades of old 4-H days and practising for speaking contests!

Those of you who know Mum's list-making abilities can imagine how
many questions she has for you.

THANK YOU for breathing deep and training for this marathon with Mum
and with all of us.

Catherine, Nancy, and Janet

Thanksgiving Blessing

HAPPY THANKSGIVING!

 

LOVE ISABEL

The words of Mum's choosing -- letter by letter with her nods -- for all of us.

Cracking the Code!

Dear Family and Friends

We are jubilant that together -- Mum and we  -- have found a way for her to communicate words and phrases.

Inspired by the moving story of Jean-Dominique Baub in THE DIVING BELL AND THE BUTTERFLY, we provided Mum with a verbal and written listing of the alphabet consisting of the letters reordered in accordance with their frequency in the English language.  Here they are: 

etaoin

srhldc

umfpg

wybvkxjqz

Through head nods, Mum spells out the letters of the words and phrases she wants to communicate.

Once we explained how the system worked, Mum's first word came in under a minute.  We quickly graduated to Mum wanting to do phrases, but the only thing in this process that is quick is Mum's ability to scan the letters.  Her helpers need to keep up with her.   Not an easy task!  Mum does amazingly well at keeping two files open at once -- remembering where she is in the word she is spelling while searching for the next letter on the board or through her listening. 

Mum has always been a wizard with words -- in verbal conversation and in the thousands of letters that she has written in her lifetime. That skill coupled with years of teaching children to read and write means that she is a natural with this process.

The nurses and therapists have found ways to understand Mum's basic physical needs, but Mum can now express some of her emotional needs.  This is a different level of communication. It is still tediously slow and it very very tiring for Mum.  HOWEVER, she can provide us with discussion topics of her choice so we can continue with YES and NO questions.

We enter this Thanksgiving time knowing we have entered a new chapter in Mum's ability to communicate.

We continue to search for a Speech and Language Pathologist who can "meet Mum where she is at" -- far beyond the basic communication boards that an acute care hospital provides.  Mum is gifted with words and wit whirling about in her mind and heart,  and waiting to be expressed.

With this posting, comes our recommendation for the fine book (recently made into a movie)  that inspired us to try this method with Mum.  THE DIVING BELL AND THE BUTTERFLY is the memoir of a 43 year old French magazine editor who experienced a massive stroke.  He could move his head a little, and blink his left eyelid. Through the system described above, he dictated an entire book with the flick of his eyelid.

Mum has much more movement than the flick of an eyelid.  Each week her muscles are very very slowly increasing in strength.  She is sitting and standing with help and does her exercises hour after hour in bed.  She can shake her head vigourously (and thus can once again give 'orders' to her daughters which she indicates is very satisfying!).  Mum also communicates some emotions through eye movements.  We see very slow change -- but it is positive, and that gives us all hope. 

May it be so for you --  our loyal readers and Mum's fans!

Nancy, Janet, and Catherine

Hope Circling Round

Hello Family and Friends

We recently met with Mum's neurologist following a week of intense reading of medical articles where we attempted to learn everything we could about Mum's condition. Her neurologist admitted Mum to the General Hospital over 5 weeks ago, followed her case for the first couple of weeks, and met with us again having reviewed the detailed charting of her progress while she has been under the care of intensivists and a respiratory specialist.

Mum's condition has included all of  -- encephalitis  (acute inflammation of the brain);  meningitis (inflammation of the protective membranes covering the central nervous system), and myelitis (infection and swelling of the spinal cord). Her primary diagnosis is that of myelitis -- the rarest and the most devastating of the neurological syndrome conditions.  There are over 40 Saskatchewan residents with West Nile Neurological Syndrome and very few have myelitis.  Recovery from myelitis takes the longest of the three.

The neurologist has confirmed that Mum is making very slow improvement and he expects her improvement to continue in hospital and rehabilitation very very slowly over the next 6 months to a year.

So here's some more background....

How has Mum's neurological system been affected?  The virus has infected the lower motor neurons of the spinal cord (the anterior horn cells) resulting in a myelitis that is polio-like in the symptoms. Her breathing has been compromised and she has been dependent on a respirator to breathe for over a month although she is becoming less dependent each week.  She is also experiencing flaccidity (limpness) in her muscles.  

So what does that mean for the short-term?  The goal right now is for Mum to gain enough strength to no longer need the respirator to breathe.  Supportive care is very important so plenty of rest, good nutrition, and daily exercise are key to her gaining that strength.

So where do we find HOPE for these hard times? Mum's condition is very sobering and yet continues to be one of great hope.  She has survived six very difficult weeks of critical illness.  She continues to gain strength each day centimetre by centimetre.  Today during physio, she sat (almost on her own) on the edge of her bed for 10 minutes doing very simple foot and leg movements. Mum exercises her feet and legs much of the time that she is in bed.  In fact, we have had to encourage her to rest before the physios come!  As always, she continues to be keenly interested in your news and views. 

We bring HOPE into Mum's room every time we visit, and as we share your cards and letters.  The cheers of Mum's physiotherapists can be heard down the hall.  AND Mum also brings HOPE to us.  HOPE is circling around that room every day.

On Sunday, our families celebrated Janet's birthday with Mum in her room (and with carrot cake for all the staff on the ward).  We were a lively lot and we had to shut the doors so not to disturb the other patients.  Meg and John developed a list of questions to help the nurses communicate with Mum about her music and conversation interests.  And Mary and Josh decorated her room with four new pieces of art -- all done with fruit and flower smelly markers.  And as Mary said, "So now your room doesn't smell like 'hospital,' Grannie!"

In gratitude for Mum's continuing determination and fierce spirit, and your enduring support of all of us,

Janet, Nancy, and Catherine

HOPE and INSPIRATION

Hello Friends and Family

I have just spent the weekend with Mum in Regina. It's harvest time in Saskatchewan and the weekend included two achingly beautiful Autumn days. We can see the leaves changing colour from Mum's room.

I am keenly aware that the four West Nile Virus Neurological Syndrome (WNVNS) patients that I have come to know about were all active people in their 70s until their chance meeting with the Culex Tarsalis mosquito. All love the outdoors and had spent their summers enjoying creation -- gardening, farming, travelling in Canada and internationally, camping, building decks, fishing, painting, buildings, walking and hiking.

This week as Isabel's family, we continue to await further assessment of Mum's prognosis and treatment while researching medical articles that can inform our own increasing knowledge. No patient with WNVNS presents in the same way. Some symptoms are similar, but many are different depending on what part of their neurological system was affected. Each is on their own path to recovery.

Mum spends a lot of time catnapping and sleeping. She is probably catching up on a few decades of sleep! When she is awake, Mum is alert and very interested in your news -- and particularly stories of inspiration from the personal lives of her family and friends. Some of you have also been on long slow roads to recovery and mention of you brings many nods from Mum. She is enjoying hearing about harvest progress and daily weather reports! Bringing the outside world to her hospital room is so important. Thank you for sharing your hope with Mum.

At this time Mum has no oral words as she copes with throat paralysis and breathing with a respirator. A task for this week is to determine how best to help her communicate with hand, eye, hand, head and shoulder movements so that she can give us more information about her thoughts and feelings. She does a very good job already -- we just have to figure out what particular movements mean! During weekdays, Mum has physiotherapy twice a day so she is finding her seat on the saddle again. When she is alone, she continues to do hand, arm, and ankle exercises on her own. She is so determined! This progress is slow, but it is progress!

On Sunday, she raised a definite "Thumbs Up" while hearing the story of another WNVNS patient who "lives next door" and who had shared his hope with Mum through a visit from his daughter.

Thank you for winging your prayers and energy for her neurological healing. We also pray that she may know how many people are pulling for her right now! You are all part of Mum's community who is holding her and us -- and each other -- in care.

To those that have asked about sending messages: Please do so to:

catherine.barnsley@usask.ca

or by Canada Post to: Box 190,
Abernethy, SK S0A 0A0. Canada.

We continue to ask for NO VISITORS at this time. Isabel needs a tremendous amount of rest to recover. Much of her awake time is spent in therapy. The stimulation that comes from your messages that we can share with her at this time is what is needed. Thanks for understanding.

It is another brilliant harvest day in Saskatchewan as we continue to juggle combining, trucking, school, extra-curricular activities, nursing and education jobs, visits with Mum, and research and
advocacy about her health care. We know that Mum is cheering us -- and all of you -- as well!

With gratitude,
Catherine