Happy Birthday, Isabel!

On this 30th day of December

Happy Birthday, Isabel!

AND WITH JOY ON EVERY BIRTHDAY,
COUNT YOUR AGE BY FRIENDS NOT YEARS.

This greeting came to Mum with one of her birthday cards. It sums up
much of Mum's delight of the last week as she has enjoyed cards and
visitors and phone-calls on her speaker phone. Your messages about
your activities transport us to another place far beyond a too
familiar hospital room. Thank you!

As we anticipate a new year, Mum received another card...

AN OPTIMIST STAYS UP UNTIL MIDNIGHT TO SEE THE NEW YEAR IN.
A PESSIMIST STAYS UP TO MAKE SURE THE OLD YEAR LEAVES.

Whoever you are, wherever you are....

HAPPY NEW YEAR!

From Isabel and the Gang

Merry Christmas!

Dear Family and Friends

As we discussed with Mum what greetings she wanted to share with friends and family, these are the words that came:  

THANKS FOR ALL YOUR MAIL.  MERRY CHRISTMAS! 

And on this Christmas Day, we include a Blessing as well:

May the eagerness of the shepherds,

the joy of the angels,

the perseverance of the Magi,

the faithfulness of Joseph and Mary,

and the peace of the Christ child

be yours this Christmas and always.

With love from Isabel -- and with help from Catherine, Nancy and Janet

LOVE and Gratitude

Hello Family and Friends

The fourth week of Advent marks the lighting of the fourth candle -- the LOVE candle. Two friends were part of reading the Advent Liturgy with Isabel for the fourth candle. 

As we consider the fourth candle in the Circle of Light, we continue to dwell in gratitude for the Gift of Love that has come in so many forms to Mum through people who love their work and how they serve the world, and those that show acts of love towards their family and friends. 

We are grateful for: 

* visitors -- neighbours,  friends, and nieces and nephews who converse with Mum about the questions that she helped identify on her Visitors' Discussion Board. (Have you signed the Visitors' Book?  What are you doing for the Christmas Season?  What's new in Abernethy? Will you have a chocolate? How is your family?)

* an English pen-pal whom Mum has never met but who writes every few weeks -- and whose gift of English currency means Mum now has a lovely small Christmas tree in her room

* a florist who heard about Mum and sent a bundle of fresh pine, spruce, and cedar so Mum could experience some of the smells of Christmas

* a particularly attentive nurse who introduced Mum to Paul Potts (the opera singer who won England's equivalent of Canadian Idol) by bringing her CD for Mum to listen to one Sunday. Check out "Paul Potts"  on YouTube at: http://www.youtube.com/  for a delightful story of overcoming difficulty to become a singing success.  (Once you get to the YouTube site, type "Paul Potts" into the Search function.  Check out the sequel, too!)

* the nurses who aren't assigned to work with Mum but drop in to find out whose names are on the visitors' board or to bring their children to meet Mum

* friends of Isabel who have never explored the Internet but now read the blog regularly (among other things!) through home computers or by going to the library

* your seasonal wishes winging across the miles by phone, email, and letter

* Isabel's love of people -- a gift developed over decades of being genuinely interested in every person she meets.  This includes the adventures of her caregivers and their families.

* Mum's positive attitude!  On the Saturday before Christmas Day, she wanted to pick out what clothes she would wear on the 25th.

Our hearts are full of gratitude.  

6F is a festive place these days with carollers at noon, decorations, the occasional Santa hat, and Christmas music and programs echoing through many rooms.  As we keep company with Mum during these days and walk through other parts of the hospital, we are keenly aware of other patients and family members who are also experiencing a holiday season that feels very different than usual.  Our hearts widen as we consider all whom are ill and/or are recovering during this season. 

Blessings of LOVE, HOPE, PEACE, and JOY,

Nancy, Janet and Catherine 

The Winter Solstice

Greetings on this Solstice Day!

This has been a good week!  Mum has been up in her chair in all her regalia for 3-4 hours each day ready to greet a surprise or planned visitor, or a nurse just stopping by on the way to some storage closet. Festive music is in the air and the mood on 6F is cheerful.

A friend from Abernethy visited this week and said: "Isabel - I look for the light in your bedroom window every morning.  When I see it come on, I imagine you waking up in Regina! I think of you every morning as the daylight comes!"

We have learned on this journey that prayer comes in many forms.

This is the time in the year in the northern hemisphere when we have the least daylight.  The winter solstice happened at 12:08 AM Central Standard Time on Saturday.  Today is "the tipping point". The earth now turns again toward the sun with the promise of longer days to come. Mum always revels in receiving the Sears Spring & Summer catalog and the first seed catalogs at this time of year.  It's a day when she loves to declare loudly, "At last -- the days are getting longer".   

We share some Winter Solstice words from one of the CDs that Isabel listened to this week:

"...Deep in the night, listen

listen

Turn to the light

waken, waken

Deep in the night turn to the light

Waken to Sun's ancient summons ~..."

from Carolyn McDade's "Born of a Star" on We Are the Land We Sing.

The Nature of JOY

Hello Family and Friends

It is the third week in Advent and along with the candles of HOPE and
PEACE, we light the candle of JOY.

We continue to be amazed, heartened, and full of HOPE as we consider
Mum's enduring capacity to find joy in her life. At a time when we
do not know Mum's long term prognosis and each day must be lived for
the moment, Mum continues to be engaged with the broader world around
her. This week her nods, head-shakes and mouthing of words were in
response to news about the Canadian dollar and commodity prices,
along with her usual inquiries about the lives of the families of her
nurses and visitors.

For many weeks this fall, Mum was unable to smile because of the
palsy in her face and particularly in her jaw. Her muscle tone in
her face is returning and once again Mum can give a huge smile that
can take your breath way. Everyone -- including the endless medical
staff who parade through her room -- receive her big grin. We are
amazed at Mum's ability to hang in with such spirit considering what
she has endured and continues to endure in this two-steps-forward,
one-and-three quarter-steps-backward struggle to recovery.

Mum is teaching us all that JOY is an emotion that arises from within
us and is not affected by the things that happen to us. It is a gift
of life found in the midst of gritty determination. The struggle of
the last four months has not taken away Mum's ability to find JOY as
she greets staff and visitors, delights in a new day that may be
better than yesterday, and receives her Christmas mail.

For this and more, we rejoice!

Catherine, Nancy, and Janet

Peace and Light

This is the week that we name the Candle of Advent Peace with Mum.
This past week a beautiful, cozy purple and gold prayer shawl or lap
blanket arrived in Isabel's room. It was lovingly hand-knit by a
friend of Mum's.

With the shawl came the words:

May the softness of this shawl cradle you in love.
May its warmth remind you that you are held in the tender keeping of
the Creator.
May its embrace speak to you of the promise of peace in the midst of
turmoil.
Woven into each stitch is a prayer for comfort, healing and peace.

On the third day of Hanukkah or the Festival of Lights, a family
friend arrived in the late afternoon to bring Mum a menorah (candle
holder with candles). Our friend talked with Mum about her extended
family's Jewish tradition and how they honour the eight evenings of
lighting candles at sundown. It has been heartening to imagine Mum's
menorah lit in her window of the 6th Floor of the Regina General
throughout this holiday season.

Peace and Light
With us
Each day and night.
May it be so with you.

Isabel's Open House

Hello Family and Friends

A new poster board of photos and Thank Yous hangs by the door in
Isabel's room.

On Friday, Mum hosted a seasonal Open House for the staff of 6F to
thank them for all their care. Mum was up in her wheelchair with a
big smile as a gracious host -- as she always is.

Twenty of the staff came by to greet Mum and enjoy home-made mince-
tarts and nuts 'n bolts, oranges and chocolates. Housekeeper,
Nurses, Physiotherapists, Doctor, Respiratory Therapist, Social
Worker, Ward Manager -- they were all there. Mum's respirator was
OFF throughout the party which means she was breathing on her OWN
with help from a little extra oxygen! Carols and conversation filled
the air.

All the staff who missed the party are checking out the photos and
list of guests on the wall.

Season's Greetings to all of you!

Deck the Halls!

Meg and John breezed into Grannie B's hospital room with all of their teenage energy to hang Mum's usual decorations from her home in Abernethy.  The walls drip with garlands and the windows are outlined in green and gold.  A large colourful ball hangs above her bed.  A nativity scene is found on one wall. Mum has a new Celtic Christmas CD, and we cranked up the bagpipe version of "Deck the Halls" during one slow day at the hospital. Those halls may never be the same.  Just wait 'til they hear the Hallelujah Chorus!

Today two friends of Mum's came to visit.  One brought a photo of herself with Mum's horse, Levi.  The photo is now on Mum's "Photos of Friends" Board.  Isabel's friend who had not seen her since September said, "You have made remarkable improvement considering where you were in September."  Mum was up in her chair with clothes and jewellery and newly styled hair and was full of smiles and nods.  Her friend said, "I believe that you WILL get out of this place."  Mum used her letter board and spelled out, "Cancel my bed!"

Later today, a Respiratory Therapist came by and said, "Isabel, you do not have four grey walls.  They are all decorated."  A housekeeper added, "Your room is one of the most interesting I see as you have so much neat stuff about your family and friends.  AND --  it is one of the most challenging when we have to do a deep clean because you have so much stuff!"

A decorated room stuffed with momentos of family and friends, and "remarkable improvement"  -- that's a good supply of HOPE for this first week in Advent. 

Advent HOPE

Hello Family and Friends

This is the week that people in our faith tradition light the first candle of the Advent Season. It is a season of waiting and promise, and it requires our trust to believe in the power of HOPE, PEACE, JOY, and LOVE sometimes amid great odds.  

Isabel has always had a circle of Advent candles on her table in December, and this year is no different.  This week, some family members shared an Advent litany with Mum even though we can't light candles in a room with extra oxygen!

We named the first candle of the circle as the candle of HOPE. 

HOPE came into Mum's room this week through six sets of visitors from her home 70 miles away at Abernethy.  These hardy folk braved a cold, snowy, windy week to bring light and laughter to Mum's room. 

As a result of their visits, there are three new plants and flowers in Mum's room. First came a red poinsetta from a friend who brings one to Mum each Christmas.  Next came a budding amaryllis which will burst forth in bloom before Christmas.  And finally, a lovely red rose set in purple Scottish heather.  Mum is enjoying each one of them.

Mum's marathon continues with HOPE and with uncertainty.  She has good days and not-so-good days amid her ever present determination and her love of visitors.  Each day challenges us to carry HOPE in our hearts and to live with patience. Each day calls us to believe in the power of HOPE to be born anew each day.

One of Mum's favourite poems is this first verse of an old poem by Emily Dickinson:

    "Hope" is the thing with feathers 

                          That perches in the soul 

                          And sings the tune without the words

                          And never stops -- at all.

With enduring Advent HOPE,

Catherine, Nancy, and Janet

Isabel the Brave!

A few weeks ago, a friend of Isabel's sent her a new CD titled "Scotland the Brave". Mum listens to this collection of Scottish pipe and drum classics nearly every day. Everyone on the Respiratory Unit of Regina General Hospital knows that Mum has Scottish blood and loves the "skirl of the pipes".

In these November days of diminishing light and lengthening nights, we are so aware that Mum is "Isabel the Brave". Mum is so utterly determined to do whatever she can to regain whatever health is possible for her at this time.

On September 25, we posted Mum's diagnosis from her neurologist -- encephalitis, meningitis, and myelitis - with a primary diagnosis of myelitis -- the rarest and most devastating of the West Nile Virus Neurological Syndrome conditions. The neurologist expected very very slow improvement in Mum's condition, and that is what we are seeing -- very very slow improvement. Mum experiences both flaccidity (limpness) and spasticity (rigidity) in her body. She continues in daily physiotherapy to regain her range of motion and flexibility. Mum has regained very little core strength so she must be moved from bed to chair by her physiotherapists or by a mechanical lift. HOWEVER, she is able to sit in her wheelchair for three hours a day. This is improvement. This IS progress!

Mum continues to very slowly wean herself from the respirator and now averages 10 hours a day where she is off the respiratory and uses a mask over the trach in her throat to breathe. The mask provides her with slightly more oxygen and humidity than is in room air. It is heartening to walk into Mum's room and see the respirator turned off -- no flashing lights and beeps!

The process of weaning plus recovery from the virus is exhausting. Some days, Mum sleeps soundly for most of the day. On those days, we need to believe in the healing power of sleep. On other days, Mum is awake for much of the day. Her nights and sleep patterns also vary and we are thankful for the company of varied CDs, CBC radio, and attentive nurses who work a 2-1 (patient-nurse) ratio.

Each day is unpredictable. Will this be an awake day or a sleepy day? We never know. When Mum is awake, she is alert and delights in mail, phone calls, visitors, news of Agribition (Canada's huge agricultural show held every November in Regina), and those Grey Cup-winning Saskatchewan Roughriders!

It continues to feel like a miracle that when Mum is awake and alert she appears to remember everything and everyone she has ever known. Communication continues to be a huge challenge as Mum has so much to say to us and does not have the ability to whisper or speak out-loud, although she is mouthing words on a regular basis. We are all working to try to mouth-read. Mum does use the letter-board and often spells out complex thoughts. However, even using the letter-board can be exhausting.

This past week as we discussed the upcoming holiday season, Mum used the letter-board to ask how she would receive her Christmas mail. We reassured her that the Pony Express from Abernethy Post Office continues to work very well!

The third verse of the song, "Scotland the Brave" goes like this:

High in the misty mountains
Out by the purple highlands
Brave are the hearts that beat beneath Scottish skies
Wild are the winds to meet you
Staunch are the friends that greet you
Kind as the love that shines from fair maidens' eyes.

The word "staunch" has come to mean "steadfast in loyalty".

Thank you for being those kind staunch family, friends, and community who are supporting Mum and us during these short days and long nights,

Janet, Nancy, and Catherine

"I've Survived Damn Near Everything"

A year or so ago, a friend of Mum's gave her a lapel button that says:

I'VE SURVIVED DAMN NEAR EVERYTHING!

We found it last week in Mum's jewellery box in the midst of her
Celtic pins, clan brooches, pearls, and Christmas baubles. The button
is now on Mum's bulletin board in her hospital room, and she has worn
it on her "sitting up" clothes.

On the day of Regina's first snow, Janet and Catherine wheeled Isabel
to the window to see all the white on the top of Regina houses. Mum
knows very well that it is mid-November, but the sight of all the
white brings a visual reality to us all as we consider Mum's long
stay in hospital. After Mum went back to bed, she asked for her
letter board.

She spelled out RED TOPS. Mum is weary of blue and green fleece
jackets and is looking for more colour in her life! AND the holiday
season is approaching! So Mum now has new red sweaters and earrings
to cheer us all. On Sunday, Mum asked for her lipstick before two
old friends arrived to share tales about Gillespie (our rural school
district) and Shorthorn (cattle) Events.

As Nancy says, "Some days Mum keeps US going!"

It's rather like being handed HOPE on a platter.

Isabel's Social Calendar

With each passing week, Mum is increasingly enjoying visitors and
phone calls.

Catherine has agreed to be her Social Co-ordinator. (She thinks it
will look good on her resume!).

In order to pace visitors with Mum's schedule of nursing care, rest,
and therapies, we are asking that you be in touch with Catherine
before planning to visit. You can reach her by email at:
catherine.barnsley@usask.ca OR 306-270-6394. We can then share some
ideas with you about your visit with Mum.

You may also wish to leave a short phone message for Isabel on her
home answering service. 306-333-4805. We can access Mum's messages
from her hospital room so she can hear your voice and good wishes.

Mum's condition continues to be vulnerable, however, we are thankful
for the continuing pleasure that she takes in her broad community who
is holding us all in care and prayer.

Nancy, Janet, and Catherine

Grand Central Station

Dear Family and Friends

Isabel did get to vote on Day 2 of eight hours a day OFF the
respirator! Day 2 has now turned into Day 6.

"That's one third of the day! That's one third of Isabel's
marathon!" declared the niece of another West Nile Virus Neurological
Syndrome survivor.

It has been a good week. Although Isabel continues to cope with
constant neurological fatigue, her desire to be socially active
increases weekly.

Friday was such a day. The afternoon began with a visit from two
Abernethy friends who spent 15 minutes telling Mum news from her home
community.

Just before 2:00, two cousins arrived bearing a variety pack of home-
baking "For Isabel's caregivers" and two hand knitted exercise balls
for Mum's hands. As the cousins prepared to come into see her, Mum's
two physiotherapists and social worker arrived to give Isabel and her
family a half hour coaching session of Mum's new physio/occupational
therapy plan. As we have said before, Mum has a dynamo physio team.
Mum was sitting up in bed and her lead physio plopped down on the bed
beside Mum to talk about the plan. The cheers and chatter were
constant as members of Isabel's family were put through the drill.
Mum's letter-board was brought out and she contributed her own
questions about her therapy.

At one point in this session, a respiratory therapist stuck his head
in the door to add his cheers for Mum's progress. A passer-by nurse
inquired if this was the cheerleader practice for the Riders' big
game on Sunday.

In the meantime, ward staff from nurses to respiratory specialists to
housekeepers came by to taste the home-baking. When the cheering
squad left with mouths full of baking, Isabel's cousins came in to
share news of extended family activities.

Amid the huge compromises to Isabel's physical health, we continue
to be so thankful that Mum's cognitive ability, delight in
socializing and hearing news, and warm greetings to people as they
come through her door are in no way diminished! This in itself is a
miracle!

Your messages of good wishes and news continue to be bright spots in
every day.

THANK YOU! THANK YOU! THANK YOU!

GO RIDERS GO!

Catherine, Nancy, and Janet

Exercising One's Civic Duty

Hello Family and Friends

When Mum wants to tell us or ask us something, we frequently need to
present a verbal list of possible topics before we discover the
"general area" of conversation that Mum wishes to have with us.

During time identifying discussion topics on Saturday, Catherine was
perplexed about the keen interest that Mum had in a particular topic
that did not fit the usual categories of health care, communication,
family, friends, community events, and things that Isabel wants her
daughters to do (also known as "orders").

Mum finally rolled her eyes, motioned to the letter-board and rapidly
spelled out "vote". She and Catherine then had a 15 minute
"conversation" about events leading up to the Saskatchewan provincial
election this week. Catherine was not up to speed on all of
Isabel's questions including the names and positions of all the
candidates in the riding where Isabel lives. We might have to count
on a son-in-law for that analysis!

One of Isabel's doctors came during that discussion, and Catherine
suggested that this was a good time for Isabel to teach him the
letter-board. He declined claiming possible political pressure placed
on him by a patient. Perhaps next week he will agree to be one of
Isabel's students! As he left, he reminded Isabel that she did have
the right to vote and she nodded enthusiastically.

Here's a toast to Isabel and her keen interest in civic and community
issues -- and educating others!

Mum has had another steady week of 6 hours off the respirator each
day. Slow but steady goes this marathon.

Nancy, Janet, and Catherine

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

Isabel's Marathon

Sunshine came into Mum's room on Sunday with a visit from her nephew Doug Froehlich. Doug shared the news that he had just witnessed his daughter, Amanda, win the Queen City Marathon (Women's Division). As a former track and field athlete herself, Mum has followed her grand niece's running career with great interest. Mum's response to the news of Amanda's accomplishment was one of obvious pleasure. One can show a lot with eye movements and nods when you are pleased!

Mum is on her own marathon -- a hard and lengthy road to healing. There are many things that are uncertain in Mum's life these days, but there are four things we know for sure:

* Mum's recovery is at a slow snail's pace. Sometimes it feels centimetre by centimetre.

* Your cards and letters and care bring life to Mum, to us, and to her hospital room. We could not be as present as we are to Mum without you -- and the medical members of our extended family who support us in keeping Mum company, and with research on West Nile Neurological Syndrome.

* Mum continues to bring the world together. Each day we hear from new people who are part of Mum's life. Connections with old friends and extended family have been rejuvenated. We continue to meet other West Nile families as they cheer their loved ones on this marathon.

* We continue to hold and share HOPE -- and we need you to hold and share yours. As the old saying goes, "When someone you know has lost their HOPE, please give them some of yours."
We continue to ask for no visitors at this time as Mum's energy is such that we need to monitor her visiting very closely.

Thank you for all your support,

Nancy, Janet, and Catherine

Determination and HOPE

Hello Family and Friends

No poetic metaphors tonight....

Just dogged determination on the part of Mum and all of us to hang in there in HOPE during these long days and nights. We encourage Mum about how well she is doing. Each well done stretch... each day of improved breathing on the respirator is rewarded with affirmation. Each nurse and each therapist is so appreciated.

We have four long strings of back-to-back cards hanging like mobiles around Mum's window. Thank you for your care and energy and prayers and HOPE that you are winging our way.

You can continue to leave messages on Mum's home phone number (333-4805); send cards to Box 190, Abernethy, SK S0A 0A0; or e-mail us at: catherine.barnsley@usask.ca. We are always glad to hear from you.

Janet, Nancy and Catherine

The West Nile Dance

Four steps forward

One step back

Twice to the left

Once to the right

Forward we go

All around the circle.

We are all still learning the steps of the West Nile Dance. Medical staff and family(ies) together -- sharing what we know and learning with each other -- attempting to piece together symptoms, effects, and recovery. There is limited medical research on the long-term implications of West Nile Neurological Syndrome, and we know that Mum's case is contributing to that important medical knowledge.

Mum had a respiratory set-back on Sunday that was a reminder to medical staff and family that we are finding our way together through a neurological syndrome about which so little is known. Mum's health stabilized on Monday and Tuesday, and once again we are moving forward one day at a time. Mum is aware of each of these days and the long road ahead. One of the symptoms of the encephalitis that is caused by West Nile is deep weariness and grogginess. Mum has sleepy times and alert times. When we ask her if she would like to hear cards and letters during those alert times she nods, and we bring you into her room again. Mum has perfected eye rolling and shoulder shrugging, and makes her feelings about some topics very well known!

Some of you have asked about online West Nile internet sites. Here are two sites.

The first is a link to the Public Health Agency of Canada. Click here. See the right side of the page to click on different topics including statistics.

The second site is Saskatchewan Health. Click here. Sometimes the Saskatchewan Health site will take you directly to West Nile Virus. At other times, it takes you to a general page. If you get the General Page, you need to scroll down and click on "healthlineonline". Then, when the alphabet appears, click on W. Then scroll down for West Nile Virus.

Thank you for your ongoing care and prayers for Mum, for her family and friends, and for the large medical staff that works with Mum each day.

Catherine, Nancy, and Janet

The Saskatchewan Cheerleaders!

Saturday evening, September 1

If the Saskatchewan Roughriders had Isabel's cheerleaders leading the way this weekend we know who would be the victors at the Labour Day Classic! Read carefully, you Winnipeg Blue Bomber fans!

Isabel has an amazing cheerleader squad of 5 physiotherapists and an occupational therapist who have encouraged Mum to make great progress in the last three days. After three weeks on her back, the team helps Mum to sit up and she can sit on her own for one minute. She can lift her legs up and down with some help. She does 30 minutes of exercises each day. (I wish I could say the same!) Mum has been sitting in a chair (with supports for her head and body) for an hour each of the last three days. She can hold her cards to look at them while we read them.

Mum continues to use a ventilator to breathe, and her lungs are slowly getting stronger. She does not have spoken words, however, she can tell us family birth order of her students from 50 years ago as we read cards and letters. Mum tells us who is related to whom through the questions we ask her. She can communicate the ANSWERS through nods, shakes, and eye movements. We just have to get the QUESTIONS right!

Mum's progress this week is due to her determination, and the caring and enthusiastic support of nurses and her amazing physiotherapy team whose cheers of her daily progress can be heard up and down the hall. The lead physio is so in tune with Mum. She knows that Mum is an excellent horseback rider. The focus of Mum now finding "her centre" and being able to sit tall on her own is remembering how to ride a horse. One of the other physios is an experienced rider as well, and the conversation focuses on horse talk.

Tomorrow I will add another big photo to Mum's wall. It is of Isabel riding 'Dixie Belle' when she won the Best Rider of Show at the Saskatoon Exhibition in 1944.

We're all along for the ride! Go Riders Go!

Catherine

The West Nile Ride

Thursday evening, August 30

Dear Family and Friends

Greetings from the city -- and the country -- 

This posting has four parts:

1. Brief Update

2. No visitors please

3. How to Send Communication to Mum and Us

4. "The Ride"

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

Brief Update 

Mum continues to be a resident in a critical care unit at Regina General Hospital.  She has a lovely private room with a terrific view of the trees and parks of Regina, looking far out to the prairie harvest.  Mum is conscious and is able to maintain focus for a short time to hear messages and harvest reports.  She is usually acutely aware of what is going on around her, and we keep reminding the staff who come into her room and speak to us ABOUT Mum that they had best address ISABEL as she is hearing every word!

Mum cannot speak or swallow.  She requires a respirator to breathe. She communicates through facial expressions and hand squeezes. Mum has a huge medical team working with her -- doctors, nurses, physiotherapists, respiratory therapists, and a speech therapist.  She is very very determined which gives us great hope.  This will not be a surprise to those of you that know her as friend, aunt, cousin, teacher, athlete, or committee member!  West-Nile has greatly compromised her body.  However, yesterday her four physio-therapists and her nurses gave loud cheers at the progress she was making to recover some movement and some breathing ability.  

Mum has a very long road ahead of her.  Her days are two-steps-forward-one-step-back.  We continue to live in hope as she has shown us her powerful determination. She is clearly in charge of her program!

No visitors please

Thank you to all who have asked if you can visit, bring gifts, or provide respite to us in our support of Mum.   We very much appreciate your offers.  We are calling on medical members of our extended family to be with Mum in afternoons so that one of us does not have to be there every day.  However, we continue to request that at this time you do not visit Mum.  That is her wish, and ours. She is getting stimulation from a variety of health care providers and she is in various therapies throughout the day.  Thanks for understanding and spreading the word.

How to Send Communication to Mum and Us

There are four ways:

1. By Canada Post to: Box 190, Abernethy, SK SOA OAO.  Please do not send cards to the hospital.

2. By e-mail to Catherine at: catherine.barnsley@usask.ca

3. By fax to: the Garratt Seed Farm at: 306-333-4833. 

4. By leaving a phone message at Mum's home: 306-333-4805.

We will pass on each message.  Regretfully, we are not able to reply to phone calls and e-mails at this time.

"The Ride"

Mum's room has huge white walls that are now filled with photos, and posters made by her grand-kids and young friends.  Christmas card strings hold your many cards.  A bright purple binder covered with stickers holds your e-mails.  Her CD player and favourite CDs are by her bedside.  

Isabel is one determined woman, and we are ALL along for the ride. Thank YOU for joining us with your greetings and prayers.  As her daughters, we continue to be in awe at the outpouring of messages that have come to Mum from every chapter of her life. We can only guess at what Mum is thinking.  However, we have always known that family, friends, and community are the most significant treasures in the world to her so your communication is very important to her -- and us.

It's a beautiful late summer harvest evening...  Full moon;  suppers in the field;  tomatoes on the vine, corn on the cob;  late night combining......and gratitude that we can continue to update you on Mum's health in a hopeful way.

Catherine, Janet and Nancy

Monday evening update

Hello Family and Friends

This is a late Monday evening update.

Mom's surgeries for the tracheotomy and feeding tube went well. Her condition is stable.  

Mum continues to require a ventilator to breathe.  She is conscious, and responding to questions but unable to speak.  Mum communicates through eye movements and nods.

The medical staff do not know the long-term implications of the West Nile virus for Mum nor for the other patients with similar neurological symptoms.  We all move one day at a time.

Mum is not receiving any visitors other than immediate family at this time.  However, we continue to appreciate each one of your messages.  We read Mum the cards and e-mail messages.  Mum listens attentively.  Your messages remind us of how life goes on around us in the midst of this very focussed time in our lives.

We regret that we cannot respond personally to the many e-mail and phone messages that we receive.  Thank you all for your ongoing care and prayers.

Nancy, Janet and Catherine

The West Nile Road

Friday, August 24

Dear Family and Friends

It is two weeks today since Mum was admitted to hospital.

We are writing to update you on her condition.

Her health was stable enough on Thursday to have surgery for a tracheostomy. Her ICU Doctor encouraged this procedure to reduce the chance of infection and increase her comfort as she requires a respirator to breathe. She is awaiting surgery for a tube into her stomach for feeding purposes. Both these procedures are reversible when she gains strength to breathe and swallow on her own. We hope that this will be possible in the near future. At this time, the extent of the permanent neurological damage to her respiratory system is unknown. Mum will remain in ICU while she stablizes from Thursday's surgery.

We want to keep you up-to-date as much as possible. Mum is hanging in -- determined, couragous, and working so hard at the tasks that we and the supurb medical staff ask her to do to help increase her movement and communication.

Mum -- and all of us -- continue to be sustained by your many greetings of support. Mum had her glasses on Thursday and was able to appreciate your beautiful cards as we held them for her to see.

Thank you all again for your many many messages, and for holding us all in your care these last two weeks.

We will likely not update the blog again until early next week unless there is a change in Mum's condition. However, each day we will continue to read to Mum and tell her about your care.

Janet, Nancy, and Catherine

Hanging In and Hanging Out

Wednesday evening, Aug 22

HANGING IN: We are all hanging in -- especially Mum whose indomitable spirit shines through during these hard days. Mum is so brave and full of determination. Tuesday was a big day -- emotionally and physically as my sisters and I shared your greetings, watched her eye and facial responses to the questions of medical staff and us, and worked with her to do gentle physio movements. She is understanding our communication and yours, and much of what is going on around her. She has lots of alert times and lots of sleepy times.

HANGING OUT: Rick and I have been at the ICU many hours since noon on Tuesday, and will be there until noon on Thursday. We have hung out a lot in the Visitors' Room where one of the supportive and unexpected bonuses of our hours in the ICU has been hanging out with other families whose loved ones are exhibiting symptoms similar to Mum, but who are still waiting for test results to confirm West Nile. We exchange symptoms and internet sites, discuss medical care, and Saskatchewan locales. My parents always made friends while in the hospital. It feels as if we are keeping up the tradition as we exchange phone numbers and e-mail addresses to keep in touch about the outcome of this vicious virus.

Again -- we are so appreciative of your e-mails, cards and faxes and we read them all to Mum several times. Stories of your work days in various places, canning peaches, hours of quilting, harvest yields, travel, summer holidays, new school supplies, and what's happening at the Abernethy Coop -- and so much more -- help the time go more quickly and provide needed stimulation for Mum.

Mary and Josh are creating a big purple binder covered with stickers to hold all the messages. I suggested to them that a binder with a good collection of cat, dog, flower, and Spiderman stickers would be just what we need to hold your words of strength, prayer and community for Mum.

We ask if you are sending cards to address them to: Box 190, Abernethy, SK S0A 0A0 rather than the hospital. And if any of you can send some sunshiny dry days to the Canadian prairies, please do that, too!

Thank you!
Catherine

A Room with a View

Hello Family and Friends

It is noon on Monday.

Mum continues to be intensive care with 1-on-1 nursing care. She has some periods where she intently focusses her listening. We know that she is hearing much of what goes on around her so we continue to reassure her and read your many messages.

Her condition continues to be very critical, and we continue to live one day at a time. Yesterday, Mum was moved to "a room with a view" so she has a larger room and a big window. We know that this is very important so that she can be aware of day and night. Now if that sun would come out and brighten up three-day-sodden-Saskatchewan, we would all be pleased. Harvest has ground to a halt with heavy rain during each of the last three days.

We continue to be moved by the outpouring of phone calls and e-mails and cards. We know that Mum has a vast community, but we had no idea of her influence. As a family, we are sustained by your kind notes and your story-telling of your days, and your experiences of how Mum has influenced your lives as a friend, cousin, aunt, teacher, and community volunteer. Reading your words helps these long days. Some of you are writing every day; some of you have written once or twice. Each type of message is so important to us.

Some of you want to send faxes. You can do so to Nancy and Bill's at: 306-333-4833. There is no need to do a cover page as the fax will come to the Garratt seed plant.

Some of you have asked about sending flowers or visiting Mum. Intensive Care is an acute care ward that has many people with a variety of critical illnesses. The hospital does not allow flowers nor does it allow visitors other than immediate family. Your prayers and messages are what are important now.

We ask for your continued prayers for courage and peace-of-mind for Mum; for strength and courage for us all, and for wisdom and compassion for the medical staff who are treating her.

Thank you again,
Catherine