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