So how is Isabel's health?

Many of you have inquired recently about Isabel's health so we decided that it is time to do an update.

Is Isabel still on the ventilator?   Isabel does much of her breathing on her own but a ventilator continues to provide 8 extra puffs of air each minute to support her.  She has two laptop size ventilators -- one for use in her room and one on her wheelchair for outings.

Is Isabel eating now?  Isabel receives 4 meals a day through her food peg into her lower abdomen.  She cannot swallow well enough to chew and swallow food so she receives her high nutrient food as a liquid. Does she miss eating?  Yes, she misses cooking and the taste of favourite foods such as asparagus, rhubarb, roast beef and spring salads.  But she is very thankful that she can receive such high quality nutrition to support her strength. 

Can Isabel speak?  Mum's vocal cords continue to be paralysed from the effects of the virus. We don't yet know if she will be able to speak in the future. 

Why can't Isabel use an electronic speech device?  She can -- and has --  but at this time she has chosen the more efficient letterboard. 

How many hours is Isabel up each day?  Isabel is in her wheelchair on average 12 hours each day.  She reads, watches TV-DVDs-videos,  listens to music, enjoys her terrace garden and outings, visits with the staff and family and friends, and receives physiotherapy and occupational therapy in her chair.

So where does she go when she leaves her room?  To the outside terrace across from her room where her garden is planted; to the sunny solarium down the hall where she hosts friends; throughout the halls of Wascana that are filled with art and windows overlooking courtyards and a children's playground; on Wascana Park's trails to Wascana Lake a 10 minute roll away.  The trip to Wascana Lake with two daughters to see Canada Geese and young goslings was her latest outing this past week.

Does she tire quickly?  Not unless she is doing a hard physical work-out in therapy.  Yes, Mum enjoys visitors for a lengthy period of time. Communication is slower than it used to be as visitors need to learn to follow Mum on her letterboard. Mum likes her visitors to stay for an hour or more if they are able.

Is Isabel's physical strength returning?  Yes. Isabel has excellent torso and leg strength.  She is slowly gaining strength on her paralyzed right side.  She has good strength in her left arm and both legs.

How is her thinking ability?  Sharp as a tack. As always.  Mum's personality and her ability to process and communicate thoughts remain unaltered from the virus.  The therapists tease her that she multi-tasks and must focus on her stretches as she often exercises, uses her letterboard, and thinks about the next thing to say or do -- all at the same time.   It is a miracle that her cognitive ability is as it always was.  This is a rare occurrence as many people who have been as ill as Mum with West Nile Neurological Syndrome have lost some cognitive function.

What other good news can you tell us?  Isabel's health since moving to Wascana has improved more than many medical specialists thought possible.  The progress is slow as it is for all survivors of West Nile Neurological Syndrome,  but it is continuous progress.

When is a good time to visit?

Sat and Sun between 9 am - 7 pm.

Mon thru Fri between 11 am - 7 pm except for 3:15-4:00; and except between 2-3 on Wed.

Do I need to call before I visit?  Isabel welcomes drop-in visitors OR you can call Catherine at 306-270-6394 or email: catherine.barnsley@usask.ca to check out a time.

Mum said on her letterboard on Saturday:  CAN'T TALK....CAN'T WALK....CAN'T EAT....CAN'T BREATHE ON MY OWN....BUT I AM DOING QUITE WELL.

There it is ~ you have the latest update.

Isabel gives thanks every day for the varied staff who support her healing ~ and to all of you who read the blog, write, phone and visit.  Thank you!

Our First Outing

Tuesday, May 27 was a red-letter day.  Isabel, accompanied by family members, spent two hours touring the MacKenzie Art Gallery and Wascana's trails.  Mum recognized the first person she saw in the Gallery which was a neat way to begin our first adventure outside of Wascana.  We toured Dorothy Knowles: Watercolour Portraits of Saskatchewan and a competitive exhibit of fine professional craft pieces by Saskatchewan artists.  We sat with life-size sculptures of humans under huge indoor plants that included palm and other tropical trees.

Then it was outside to the trails to enjoy flowering ornamental crab-apples, lilacs just waiting to burst out, and 40 minutes of strolling and rolling down the trails between the Wascana Rehabilitation Centre and Wascana Lake.  A calm, sunny, merry May day. 

Isabel is fortunate to have a portable ventilator (laptop computer size) to enable these outings to happen.

Our outing ended with time on the terrace near Mum's room enjoying the newly planted bedding plants.  We came in so Isabel could get ready to host friends from Abernethy in the sunny solarium that is in another part of the unit of Wascana where she lives.  

Mum visited.... we rested..... :)

Recipe for a Prairie Flower Patch

Take:

* One outside terrace directly across from Isabel's room

* One sunny afternoon with a sharp prairie breeze

* One Head Gardener -- that would be Isabel observing and directing from her wheelchair

*  two family members and one loyal friend equipped with trowels (the worker bees)

* one raised flower bed 2 feet x 12 feet

* geraniums - 3 fire engine red and 2 salmon pink

* wave petunias - two gala purple and 1 party pink

* marigolds - 12 "little devils"

* pansies - 6 citrus and 6 majestic blue giant

* seeds - California poppy and pink lavatera seed from Isabel's Abernethy garden

* one green watering can and one soaker hose (Whoops!  Sorry Mum! -- that was supposed to be a regular old hose)

Et Voilà!

What do we have?

The promise of a lovely flower patch to delight the senses all summer long....

And a report from Isabel the next day that the nurses had commented on the dirt in her ears following an afternoon of  supervising the gardening...

And now may the rains continue to come......

A Sunshine Workout

This weekend marks the first long weekend of a Canadian summer.
Thank you.....Queen Victoria for having a birthday!

Isabel began the weekend with a 1.5 hour physiotherapy workout
outside on the terrace across from her room at Wascana.

IMAGINE.....sun..... a soft breeze.....birdsong.....an encouraging
therapist...... and a dedicated and courageous WNVNS survivor
determined to heal to the best of her ability.

Amid Isabel's and our continual advocacy for more rehab therapy to
support her ongoing progress, we are grateful for:
* a physiotherapist who is a family friend that begins her weekend by
coming to visit Mum to do an extended physio session every Friday
morning
* a sunny second-floor terrace with chairs and a table and containers
waiting to be planted with Mum's choice of plants
* a staff that surrounds Isabel who are continually accessing other
specialists and therapists to support Mum becoming as able as she can.

We continue to be grateful and hope-filled. Thank you for helping us
carry that hope.

Isabel and the Gang

Joining the Stars

One of the therapies that is part of Isabel's recovery is BOTOX.  Yes, Botox  -- what "the stars" (and perhaps a few of our faithful blog readers) have injected to "take off a few years",  remove a few frown lines, and fill a few wrinkles. Mum's nurses (yes, the guys as well) were teasing her that they would queue outside her room in case there was any Botox left for the taking.

Upon hearing about the Botox treatment, a friend wrote to Isabel "This is what happens when one moves to the city!!!" 

Botox has been known to reduce tone or spasticity or muscle contracture in those that have neurological conditions.  Isabel's physiatrist (Doctor of Physical Medicine and Rehabilitation) considers her a good candidate for this treatment.  We are hoping that this use of Botulinum Toxin gives Mum more movement in her arms and hands and ankles. 

Botox and the chemical make-up of the condition that causes botulism are one and the same. What we don't learn in a week!

Thus endeth the chemistry lesson for today.

Joining the Experts

Hello All

Last Saturday, another West Nile Virus Neurological Syndrome (WNVNS) survivor and his spouse invited Isabel to attend the Annual General Meeting of the Saskatchewan Therapists' Assistants at Wascana.  This couple who became friends of Mum after she moved to Wascana were the Guest Speakers at this event.  Their presentation focused on the theme of FAITH, HOPE AND THERAPY ~ words on a sign in the Outpatient Rehabilitation Department of Wascana.  They had spent many months in this room since last September.  Isabel was touched that they included her in their reflections as she enthusiastically listened to their one hour presentation.

At times this couple can hardly believe that they are now experts on WNVNS.  How did this happen? How did this story become their lives? These are questions that Mum as another expert asks as well.  We have become experts in our own right having survived the acute illness of WNVNS and as we continue to do the research that is necessary for advocacy. This is especially true when there are no longitudinal studies about the prognosis of the syndrome. We are making history.

A year ago we would not have believed that this could be Isabel's story.  

Three months ago we could not have believed that Mum would be well enough to head out to such an event.  For this we are thankful as a proactive medical staff continue to support Isabel's recovery with a variety of therapies.

Thanks to all of you for your ongoing greetings that help carry us through every week.

Isabel and the Gang

"I'm Here for You"

Isabel's room was rocking on Wednesday with three visitors, maintenance folks drilling holes in the hallway just outside her door, and Mum's CD player cranked up. Her latest addition to her music collection is a new gift CD from one of her favourite local musicians, Len Gadica of Melville. 

Len has followed Mum's WNVNS story and sent along his new CD, "I'm Here for You" to acknowledge her support of him and his music over the years.  Jigs, polkas, waltzes, and schottisches make up this collection.  

The "Hocus Pocus Polka" and the "Morning Glory Schottische" have enough speed and rhythm to rev up any lengthy physiotherapy session or marathon run.  But Isabel's favourite is still "I've Played All Around".  Len's version of this familiar classic includes the names of the many Saskatchewan dance halls where he has played his old-time music.  YES, Abernethy, Balcarres, Lemberg, Fort Qu'Appelle, and Tullymet made the cut.

Len says on the CD cover "I've come to know and appreciate what a powerful force music can be as a comforter, an uplifter, a friend...."

So here's Isabel's chance to support Len and his work.  For his next performance and his CDs, check out his website at: 

http://www.lengadica.com/

By the way: The Boston Marathon was super.  Amanda had a great run!   And Isabel's progress continues in her 9-10 AM physiotherapy sessions.