Showing posts with label Victoria B.C. Canada. Show all posts
Showing posts with label Victoria B.C. Canada. Show all posts

Thursday, August 4, 2011

Disabled visitors left high and dry on area beaches


Disabled visitors left high and dry on area beaches

Brad Fisher pushes daughter Shira’s stroller-wheelchair up an uneven pathway from Willows Beach.

Emma Prestwich/News staff
By Emma Prestwich - Oak Bay News
Published: August 02, 2011 10:00 AM

Brad Fisher pants as he heaves his daughter Shira’s specialized stroller-wheelchair up the steep, uneven sand path from Willows Beach.
He enlists the help of caregiver Stephanie Davidson to pull the stroller up backwards, then pushes it the last few feet himself.
Several short stairwells can be found along the length of the beach, but the rough-hewn little trail is the family’s only access down to the sand, where six-year-old Shira, who has the genetic disorder spinal muscular atrophy, loves to play.
Fisher and his daughter have tried out many beaches in the region. Even with its bumpy
path, Willows is the only one that comes close to being friendly to Shira’s specialized wheelchair. It’s also ideal because of the hard-packed sand, rarely found on other shorelines.
Fisher is angry that public beaches are so difficult to access for people with disabilities, and doesn’t think adapting them would be hard.
“They might say ‘well, we could make a ramp there, but what are they going to do when they hit the sand?’” he said.
“You leave (manoeuvring a wheelchair on the beach) up to us, but at least we’ll be able to get down to the sand.”
Tamara Lohner’s daughter, Charlotte, has the same condition as Shira. Even though they live downtown, they usually head to Thetis Lake Park because it is the only lake with stroller-friendly access.
Visits to Willows in the past saw Lohner forced to carry Charlotte and leave the stroller behind.
“It’s hard; she’s like a really heavy, wet noodle,” Lohner said.
Having a full-time job and a son with Down syndrome leaves her little time to worry about beach access. “I just don’t think about it that much.”
There are currently no plans to improve accessibility at Willows Beach, said Oak Bay parks manager Lorne Middleton. He noted a low, sloping path leads to the water at the base of Estevan Avenue.
But Fisher said large logs washed up on the path during the winter, making it a two-person job to hoist Shira’s chair over the logs. Middleton said he wasn’t aware the path was blocked and would address the issue.
The Capital Regional District website (www.crd.bc.ca) lists three beaches with accessible elements: East Sooke Regional Park, Elk/Beaver Lake Park and Island View Beach. Only Beaver Lake has a path leading to the water, and has an accessible fishing float and boat launch.
There is also a ramp leading to the beach near Clover Point.
Many Capital Region municipalities consider accessibility when planning for parks and public spaces.
But it’s hit or miss when it comes to specific guidelines.
The City of Victoria doesn’t have any official policy relating to beach accessibility, said
Todd Stewardson, acting assistant director of parks.
“We’re not discouraging it, but we’re more focused on maintenance of the natural area,” he said.
Beaches are dealt with differently than parks, he said. Many factors come into play when adapting them, such as the specifications for the slope of a ramp and measuring its impact on the surrounding environment.
Saanich parks manager Rae Roer says Gyro Park beach has gentle trails that lead from the parking lot to the sand. He tries to ensure there’s always a clear route to the beach. But he also doesn’t want changes to “sanitize” the beach. “We tend to manage beaches in a fairly natural, wild, West Coast style,” he said.
Joanne Neubauer, president of the Action Committee of People with Disabilities, said improvements don’t have to ruin a beach’s natural charm. “There are so many ways to achieve accessibility that wouldn’t necessarily change the overall atmosphere of the park,” she said.
Many beaches, such as the inlet by Mount Douglas and the stretch along Dallas Road, have steep approaches and would be harder to adapt. But Neubauer, who uses a motorized wheelchair, said there are several that are fairly flat.
“I know there are geographic constraints, but there are other beaches where that’s not the case, and they still haven’t made any effort to make sure everyone can access the beach.”
She suggested a ramp could be cut out of the concrete walkway that runs alongside Willows Beach. “It doesn’t always involve rocket science.”

Wednesday, July 6, 2011

The Bridge Of Life by Brad Fisher


The Bridge Of Life by Brad Fisher
Lech Lecha. G-d said to Avraham, “Go (further) away-for your (own benefit)-from your land, your birth place and your father’s house, to the land which I will show you.(Parshas Lech Lecha)” I’m not the most religious Jew but I am spiritual and I identify deeply with my culture and heritage and religion. I’m the father and main caregiver to a 6 year old beautiful little girl who was only given 2 years to live. There are moments I deeply identify with Avraham being sent by G-d to an unknown land.

I just returned from a Canada Day celebration that we were not able to attend at the last minute because our daughter Shira lost her vital signs and went into respiratory arrest as I was parking at the event. It’s moments like these I feel I’ve been sent to an unknown land. I don’t have time to think of anything at times like this but work on our daughter and make her live. I suctioned the secretions from her mouth like mad with one hand while pulling the thick secretions out of her mouth and nose with my other hand. I was standing on the edge of the abyss again watching our beautiful little girl slip away into G-d’s hands as I desperately worked on her to keep her with us.

Our daughter suffers from the number one genetic killer of infants and toddlers called SMA Type 1 or Spinal Muscular Atrophy Type 1. 1 in 40 people carry the gene and one in 5000 babies are born with it. It is considered such a serious threat that it’s included in the updated version for the genetic screen for Ashkenazi Jews even though the rates aren’t higher for this population over the rest of the population. At 4 months of age Shira was diagnosed with SMA because we noticed she was not meeting regular physical developmental milestones. Days like today (reviving our daughter) are not uncommon and our lives are governed by the 24 our multi-disciplinary intensive care we deliver to our daughter Shira.

I’m crying as I write this, tearful, fearful, shaken to the core of my soul once again. I hear our daughter’s beautiful little voice echoing from the other room as she lays on the floor playing with her bubby. When Shira was diagnosed we were told, “There is nothing you can do just take your child home and love her until she dies.” In some ways this statement echoes true for all of us even those of us with regular healthy kids. We all take our children home and love them until they or we die don’t we. What a thing to say to a patient and her family. Shouldn’t the more appropriate response after diagnosing anyone with a terminal illness be we can’t cure your daughter of this disease but we can support you in caring for her and help you deliver a high quality of life to her? What drives doctors to be so HOPELESS? In our world we believe there is only endless HOPE not a hopeless end. There is also a big difference between delivering daily care to a person with a life threatening illness and just diagnosing them with an illness. Most doctors have never had to care for a sick human being they just advise other’s on what to do and I’m sure 50% of the time the advice is riddled with personal biases and no experience to base the advice on. We have only met one doctor who said, “I have no experience with this illness but together we will find out what to do, create a plan and implement it.” We have realized that doctors are people to and suffer from the same daily afflictions the rest of the population suffers from and so great care must be taken when prognosis and advice is given. You must be on your toes and advocate for your child at every moment, due diligence becomes second nature and conventional wisdom must be locked away.

When death is near and has been fended off again you can’t help but feel you are walking on the Bridge Of Life (Gesher Hachaim). It’s thought that the bridge of life is a bridge between past and future. When people ask me if I have received any gifts from my experience caring for our daughter or learned anything I respond with, “ I have never been so present, I don’t have time to think of the past and I certainly don’t think of the future because the future almost always does not include being with our beautiful daughter. Being completely present, in the moment, aware of our daughter’s breath, this is the gift!” “ (Tehillim 34:13) If someone wants to live (a true life), he must “love days” – love his days to the extent that they should not be lost, but remain preserved for him(Gesher Hachaim by Rabbi Tucazinsky).” Another soul shaking lesson I have learned is visit the sick. Compassion without Action is empty and one must act and actually do something that will benefit someone in need. Bikkur cholim or Visiting The Sick has become a passion of mine. Until our daughter was born I’m afraid I did not do my share of visiting the sick. If I could pass on any advice from our families experience it is to reach out, visit and help out those in need after all it’s a Mitzva (good deed). We have felt so lonely at times, abandoned, and left out. Yes illness is scary but you will find when you get to know these people, children, with life threatening illness you will increase the joy and remove a lot of the oye from your own life.

Another question we are often asked is what keeps you going? Why do you do this? Well we love our daughter and we would do anything for her is our reply. The second answer I give is a quote from a Hasidic Sefer (from a book titled Wrestling With The Angel Published by Schoken) I read when our daughter was about a year old that gave us comfort, peace and hope. “How will we recognize those we loved when we meet them after 120 years in the world-to-come? If they died young, will they have grown old? If they were hurt or wounded, will they have healed? How will we know them, how will they know us if we have changed or aged? The answer is that we will know them, we will recognize them because they will be clothed and cloaked in the mitzvahs we do in their name.”

Tuesday, March 1, 2011

Shira Fisher, honorary Rink Of Dreams captain




Shira Fisher,
honorary Rink Of Dreams captain,
invites one and all to the
“Rock and Roll Rink Of Dreams” Family Tailgate Party!!

Saturday, March 19th
11am – 3pm
Bear Mountain Arena Parking Zone
The Event

Telus is setting the stage for a live rock band concert in a massive heated tent.

Jive with your family to the rhythm of:
Invasion 62
The Wharf Street Band, and
That 70’s Band!!

There will be also be tasty food stands, cool drinks, steaming hot chocolate, mascots, Telus Kinect playstations and playzones, and more!!!

Entrance is by donation only. All proceeds are for kids of Vancouver Island who - just like our honorary captain - face life-threatening conditions.

It’s all part of the 24 hour Rink Of Dreams
(March 18/19 at the Bear Mountain Arena) in support of the Help Fill A Dream Foundation.

For more information please visit:
www.rink-of-dreams.com
www.helpfilladream.com
www.asonginthisworld.com

Saturday, October 9, 2010

Shira Is The Face Of Help Fill A Dream




Dear family and friends. Please vote for Help Fill A Dream. Help Fill A Dream is a front line organization that fulfills children's dreams that have life threatening illnesses. Help Fill A Dream aslo helps with medical expenses, purchasing medical equipment and more. Please vote for Help Fill A Dream. This costs nothing but 3 minutes of your time and lots of money is being given away that we could win for this incredible organization. Help Fill A Dream purhcased, delivered and erected the playground in our back yard!!!! go to : If you go to www.helpfilladream.com and click on the Aviva banner, at the top of the page it takes you to the HFAD idea....With apologies for their less than intuitive site. and please every day until the competition is finished , often and pass this around. Thank you from the bottom of our hearts!

Friday, March 26, 2010

Please Help Us Fund Raise!!!!!



I’m asking for your assistance. I am joining thousands of Canadians who don’t take their muscles for granted, by participating in Walk For Muscular Dystrophy 2010 to raise funds for Muscular Dystrophy Canada.

You can help me by making a secure online donation using your credit card. Click on the link below:

http://my.e2rm.com/personalPage.aspx?SID=2518511


Your gift helps Muscular Dystrophy Canada fund leading research to find the causes, treatments, prevention and cures for over 100 different neuromuscular disorders. Your donation also provides information, costly medical equipment, support and hope to over 50,000 Canadians living with neuromuscular disorders.

It takes 48 muscles to lift a baby and only a few to lift someone’s spirits.

Friday, February 19, 2010

The physician-scientist, the state, and the oath: Thoughts for our times

"What, then, constitutes medical humanism? I would suggest four core values: First is the preciousness (or sanctity) of each human life. The second value is respect for human dignity. The third core value of humanism is the celebration of human diversity. Finally, the fourth core value of medical humanism is a sympathetic appreciation of the complexity of the human condition- how difficult it is for anyone to meet all of society's idealized expectations regarding individual and interpersonal behaviors, and how history and circumstances have conspired to make it especially difficult for some."~ The physician-scientist, the state, and the oath: Thoughts for our times Barry S. Coller

Read The Full Paper Here: Top right hand corner full text pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578617/

Tuesday, December 22, 2009

Our Children. Our Gifts.


A new consciousness has permeated our household. Yesterday I changed Shira’s schedule. Shira used to go to bed at 10PM and wake around 9 A.M. and by the time she got off her respirator and all her physio was completed it would be around noon. I moved Shira’s schedule back by waking her at 7 or 7:30 A.M. Now Shira is waking at the same time as our 7 year old son Sammy and going to bed at the same time as he does. Shira feels so much older now that she is doing this. When it’s time for them to go to bed and we call out, “Ok kids it’s time for bed let’s get ready” you can see the joy in both of their faces. They are brother and sister, as one! The best thing about this time change is that it allows Shira and Sammy to spend much more time together. Shira used to be taking her Bipap (respirator) break the same time Sammy would get home from his after school activities which meant he had to be quite and I was unavailable because I was with Shira. Now Shira is finished with her bipap break by the time Sammy arrives home which means we can all play together.

Shira’s bath time is now at 5ish vs. 9 P.M which means Sammy can take part. I haven’t been in water with Sammy for quite some time but he really wanted to climb into the bath with us this evening. It was so beautiful and heart breaking to watch Sammy gently wash his sister and rinse her off. I washed Shira’s hair and Sammy rinsed her hair. Shira thought it was all quite amusing especially when I accidently raised her feet kicking Sammy in the head with Shira’s feet and being the little actor guy he is he sank under water. If you could only hear Shira’s laugh it is so gentle and sweet.

After the bath we continued playing in the living room. Shira was having a blast with her new Lion King Action set I found on Ebay for her. Sammy also loves it and wants one (the concept of sharing is a hard one to learn). The Lion King has taken over the household. Shira refers to me as Mufasa and I have to call her Simba; this goes on most of the day. The kids played for an hour and a half together with hardly any supervision accept for suctioning and position changes for Shira. Maxine and I sat in the kitchen just listening to them. Sam is such an amazing little boy. He is only 7 and he looks after his sister. He makes sure she has a toy in her hand, is comfortable, able to see everything he is doing and they talk sing, play make believe and interact deeply. Sammy is full of hugs and kisses for his sister and it just moves us so deeply to watch him and his gentleness.

At the end of play time it was fun to watch them argue over who gets to be Paul Stanley from Kiss. They ended their time together by watching some KISS videos on youtube. Shira has quite the will, she just does not give in to Sammy.

It took us so long to get to this place where our lives seem to be somewhat regular. More and more we witness our children playing effortlessly, without the boundaries of a life threatening disability and we wonder is this really happening to our family? They sound so “normal.” Without physically being in the same room with Shira you would never know she was as sick as she is except for her speech.

Every day Shira wakes up that day of life is a gift and every day we have Shira in our presence we are granted our greatest wish. I can only imagine what kind of man our son is going to grow up to be. I see this young boy love so deeply, strive for ways to understand her, touch and hold his sister so gently, communicate so deeply and all with no fear.

I know I don’t talk about our son as much as our daughter but I say it now, “We love you Sammy; you are amazing!”