The Magic Nine-Patch Quilt

A new patchwork quilt adorns Isabel's bed.  The inscription on the soft green fleece backing says:    "MAGIC NINE PATCH stitched with love by the Country Stitches Quilters".

Each quilter in the group contributed a section of the quilt using favourite colours and designs.  

This colourful gift and continued thoughts of the Abernethy friends that made the quilt are with Isabel each day.  When Mum receives her weekly treatment from her massage therapist, the staff tease her that they will be the next ones to crawl under her lovely quilt to receive a massage.

Thank you Quilters for your gift....your visits....your phone-calls....your cards and letters.

The West Nile Community

Isabel has joined a growing informal organization called SOWN (Survivors of West Nile) that has formed to provide support to each other and education to the public. In early June, SOWN organized a public educational event in Yorkton that was attended by over 150 people.  A panel of survivors talked about their experience of West Nile and the health system, and what continues to give them hope on their journey of recovery.  Catherine represented Isabel who had outlined on her letterboard what she wanted said about her experience.  It was a startling experience to hear the stories of each survivor of WNV and in one case, the sad story of a man who did not survive.  Each story and symptoms differed as West Nile Virus affects each person in different ways.  Some people were left with cognitive impairment (slow speech and/or slow processing of information). Others were left with polio-like symptoms (Mum is one of those).  Others are left with deep fatigue or paralysis to one limb or particular muscles.   Panel members ranged in age from 26-79.

Several days later, Isabel visited with a new friend who was in the Regina General Hospital for four months at the same time.  Her friend is also a West Nile Neurological Syndrome Survivor.  They met at Wascana to talk about their stories and their recovery.  Last Autumn, it was a dream of the daughters of these two women that their mothers would be well enough to have this meeting and conversation.  A year ago, who could have ever guessed about these new friends in our lives.

We are grateful for the email exchange among survivors, the media that continues to support the telling of our stories so we can meet others, and the survivors who have arrived at Isabel's door at Wascana to share stories and messages of hope.

New friendships develop out of such a variety of circumstances in one's life!

Visiting Isabel in June

Yes, Isabel continues to welcome visitors during this time of rehab therapy when she has both morning and afternoon therapy appointments.

When is a good time to visit during the month of June?

Saturday and Sunday between 10 am - 7 pm.

Monday through Friday between 11 am - 3:15 pm and between 4 - 7 pm. 

However note that from 2-3 pm on Wednesday, Isabel has an additional therapy appt. 

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 to make sure that Isabel will be available.  Isabel occasionally goes out of her room for an appointment or a jaunt. 

Thanks!

Climbing Over A Fence

Last September, a friend sent Isabel a card with a small dark curly-haired girl wearing a bright red shirt and denim overalls.  The photo is of her backside as she heaves herself over a fence.  The card reads: "I know you can do it."  Granddaughter Mary, says; "She looks just like you as a little girl, Grannie."  We photocopied the picture on the card and this enlarged 10 x 12 image is now posted on a door in Mum's room. 

Isabel has recently "climbed over a fence".  Her courage, determination, and continued progress since arriving at Wascana has enabled her to be accepted in the Rehabilitation Therapy Program at Wascana.

You may ask: "Well, hasn't she always  been getting therapy since she moved to Wascana? Isn't that why she moved there?"

In January, Isabel was well enough to be discharged from acute care and to move to long-term care.  Wascana Extended Care (or Long-term Care as it is sometimes known) was the only place in Regina-Qu'Appelle Health Region that accepts residents who need a ventilator to help them breathe.   Thus moving to Wascana was Isabel's only option.

There are two programs at Wascana:

1) Extended Care/Veterans' Program - this is the program that accepted Isabel in January.  Mum receives a small amount of therapy each week in this program.

2) Rehabilitation Program - this program is the one that we most often hear about as many people go there for short-term therapy when they are recovering from illness or an accident or broken bones.  Isabel was not eligible for this program as she was not considered well enough AND this program does not usually accept people who need a ventilator to help them breathe.

Now  - five months after Isabel moved to Program #1: Extended Care, she has been accepted for a one-month trial in Program #2: Rehabilitation. This program is much more aggressive than the original program.

Isabel's acceptance to the Rehab program can be described as "climbing over a fence". It is precedent setting for the many others in Saskatchewan who need a ventilator to support their breathing. Cheers to you, Mum!  Your hard work continues to serve others as you have always done!  Our special thanks to our family friend, Bonnie,  who is a physiotherapist who volunteered to work with Isabel for over an hour each week since late February. Bonnie and Isabel's diligent work along with the support of Mum's Extended Care Physiotherapist and Occupational Therapist and their Assistants have helped qualify Isabel for admission to this program. 

So what does it mean for Isabel's future now that she has been accepted into Rehab for the month of June?

Mum will continue to live at Wascana for the long-term.  However, we hope that this month of intense therapy (physiotherapy in the morning and occupational therapy in the afternoon) will help her regain some cardiovascular strength;  muscular strength in arms, torso and legs; and flexibility in her ankles, feet, wrists, and fingers. 

Mum - you continue to inspire your family, your friends, and the staff!  You have "climbed over a fence"! 

Janet, Nancy, and Catherine

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!