FUN FACT- Park for free at city of Edmonton meters with placard!

A little something Albertans may not know is that in the city of Edmonton,if you have a handicap placard, you can park at any City of Edmonton parking meter for free!.

So if there is a meter open that is run by the city(not a hospital,mall etc) You can park there for the longest alloted amount of time on the meter absolutely free as long as you display your placard!

For more info see http://www.edmonton.ca/transportation/driving_carpooling/parking-meter-rates.aspx

If Only They Would Listen

As far as struggles go, some are more obvious than others. Today we ran into a situation that,if you have a family member with a disability, can be very frustrating.

Not everyone lives in or close to a city. And with a child with Duchenne Muscular Dystrophy you can be sure there will be a lot of healthcare professionals involved with your family. In our case we tend to go to the Big City every 2-3 months.

Our Neurology team is very good at coordinating their part to cut down on trips. However there are so many other professionals such as pediatrician,bone scan, cardiology, and more. Not to mention the trips to get orthotics and physio.. these all on top of regular physical health visits.

The most recent frustration we experienced was with the pediatrician were to to see. Our child recieved a sleep test 2 years ago. They had called and asked us to come back in for results. Exhausted with running back and fourth I requested the results over the phone. They refused. I called the sleep lab and the results were given to me as he was fine..no concern. 1 year later a letter was sent for another sleep test more in depth. We went in and they called back to get us to come in for results again. Due to bad weather that appointment had to be cancelled. I again asked for the results via phone or telehealth. They refused.

Recently they called again to book the appointment. At this point I requested again for a phone call or teleconference to avoid another trip to the city(3 hours of driving one way) They refused saying they did not have the technology. At this point I decided that if they still need us to come in it must be more serious so I agreed.

My husband had to close his business for the day. My son had to take the day off school. I was too sick to help. Gas,food and snowy weather to contend with but they got there. My hisband just called and said the appointment was 7 minutes long. They told him all was well and there was no concerns.

For those of you who have walked in these shoes this story will be all to familiar to you. I recently read an article where the author felt like a "file Number" instead of a person recieving care. This can only change if more people tell their stories. It's not easy trying to keep up with everything we need to do to keep our loved ones healthy as possible. If communication between professionals and families could help solve this then why isn't it happening.

For me....I am glad my son is ok....but I am completely frustrated at the taxing situation we ge put into for the thoughtless actions of others.

Accessibility is NOT Just a Physical Thing!

There Is More to World Accessibility than what you SEE!(Diabetic Resources at bottom)


I was recently diagnosed with Type 2 Diabetes and now I am trying to get used to the lifestyle I HAVE to become accustomed to. This I have discovered is no EASY plight! Though I have been writing mostly about the physical restrictions of the world and the places that have been so incredibly aware of how to make it easier, I now realize that finding places that observe a diabetic diet is proving to be a little more difficult than i thought.

I don't profess to know anything about the diabetic diet and I am certainly NOT an expert by any means but I CAN tell you that this is the beginning of my journey to better health. Last week when I was told the news I immediately sprung into action. I was ready to change EVERYTHING in that moment...The Doc says no pills until we see if I can control it with diet..Sure...YA ...I thought "I can do that!"

Little did I know that even in the first week it would become MORE and MORE difficult to keep up that enthusiasm. Especially when it came to eating out. Some might say "so don't eat out!" . In our busy world it is just the way it is.. Convenience sells. And yes....I am one of those people that indulges in convenience.

Before diagnosed I ate out A LOT! Lunch,supper and coffee in the AM(with the occasional breakfast sandwich) Just writing about it makes my stomach gurgle. In one week I have discovered that many places are not super accommodating to the diet I need. I have also discovered that it takes me a lot more time to grocery shop.. Plan, plan, plan. I swore off dieting just so I didn't HAVE to plan out meals, count calories, and yes- the dreaded exercise advise. I built my comfort zone around doing what I wanted to do.

So I am ranting now because convenience should suit EVERYONE. Type 2 Diabetes is becoming more and more prevalent in society and there are a lot of options out there but you have to read labels carefully, search menus for the hidden health food, search the net for the recipes that will actually not make you feel terrible, watch sugar,starch,fat, cholesterol etc.

The solution:

• Why doesn't every restaurant put a section on the menu for the "Life Sensitive."
• Why doesn't the grocery stores create a corner as well to let folks like me find the food I need that won't make me feel gross, sick or crank up the sugar content in my blood.

Lucky for me there is a ton of information out there to help me decide what I need each day. I certainly took a while to find something but I did. The local Dietitian was quite helpful as well. I find as a new "Life Sensitive" individual, things confuse me everyday. Trying to figure out what I can and can't have, what I should do to keep track, How much or how little I should eat.

Don't shoot me for my view. I know many reading this will think....so....it takes time.....it will come....get over it.. but the world caters to the general population of regular diets, regular physical abilities, regular mental ability and statuses. That's the point. Convenience should suit EVERYBODY!In some way or another we could all be considered "Life Sensitive" in a physical, mental,spiritual or health type of way

So follow my Blog if you consider yourself "Life Sensitive" too.

Here are some links I have come across to help me

Canada's Food Guide:
http://www.hc-sc.gc.ca/fn-an/food-guide-aliment/index-eng.php

Canadian Diabetic Association:
http://www.diabetes.ca/

Public Health Agency of Canada:
http://www.phac-aspc.gc.ca/cd-mc/diabetes-diabete/index-eng.php

Alberta Diabetes Foundation:
http://www.afdr.ab.ca/about-diabetes

Kraft Canada Diabetic Foods Recipes:
http://www.kraftcanada.com/en/healthy-living-ideas/diabetes/diabetescentre.aspx

Canadian Diabetic Care Guide:

 http://www.diabetescareguide.com/en/index.html

Eating Plan For Type 2 Diabetes:
http://www.diabetescareguide.com/en/index.html

Eating Out Guide
http://www.diabetes.ca/files/EatingEnglish.pdf

 Just a few resources to help get started.

Accessibility should not feel like a FIGHT!

It may seem surprising, being 2011, but for people who struggle with accessibility issues we still NEED to fight. Fight for inclusion, fight for access, fight for comforts of everyday living and fight for what we would think is common sense.

There are many out there who feel they know exactly what others need. They think they can tell you what is best, what will work, what "is not" needed to make life easier. The fact is that unless you have walked a day in the shoes of a physically challenged person, you likely have little to no idea what these needs are.

Something as simple as a kindergarten child trying to open a metal door at school becomes a fight. To get a push button istalled because the door is too heavy for this child becomes a year long effort. There are many people who will try to make these decisions without a clue. To have an aide provided even though your child does not have cognitive delays seems like a stone age idea to authority, when that simple task would improve the quality of life and decrease fatigue to provide energy for what is important.

We have had many of these "common sense" fights and expect many, many more.
Some examples of the strange things we have had to fight for are:

• push button doors
• consistant aids
• wheelchair accessible bathroom
• scribes
• propper and safe wheelchair pickups
• adequate space for rampvan
• inclusion in outings
• acessibilty to outings
• physio time during weekday(teachers refusing to let child out of class)
• access to community buildings
• transportation
• use of computer devices to decrease fatigue
• and many more

Sadly I have had these fights over a number of years. Some of them I have succeeded in changing. Many I have fought the good fight and still came out on the losing end. It is incredibly daunting to have to continuously fight to HELP make life a little smoother for others.
Recently I was told about a situation with a friend where they refused to include her child in the school curriculum due to a cognitive delay. They outright told her they would not teach her child. In order for her to get through the year now she had to cease employment to provide her child lunch as they would not provide assistance at the lunch hour. That is absolutly appauling.

I was told to facilitate better independance for my child recently. Although difficult to hear(made me cringe thinking I had to give up "control") it was very good advice. But how does one trust a system that has been so difficult to improve,made so many mistakes, caused incredible amounts of stress. Until things improve I have no intention of quitting the fight to help make things easier. I feel everyone deserves the tools and respect to decrease obstacles that cause hardship. Especially the "common sense" issues that to those who experience the issues can be big problems.

Don't ask me to back down. Don't ask me to stop fighting. Don't ask me to stop caring. That is something I am unwilling and unable to do. I write these blogs not only to let others know they are not alone, but to spread the word that we still live in a very archaic era. We may have improved imensely over the years but there is still much to do!

Accessibilty and shopping

Well as much as I like to shop, it has become very apparent that for those with accessibilty needs, it is not as easy as it should be. Many store owners feel that one step may be alright for the frontage of their store. I am here to say no.
Unfortunately as I took my son shopping in his power chair yesterday, there were many stores he was unable to browse thanks to that one large step. Lucky for us we can still leave the chair outside and lift him up to ambulate around the store. But imagine those that can not. How frustrating it must be.
Store owners should take a look at the entrance to their store and ask themselves if they have done all they can for accessiblilty. If they haven't they have just blocked out a nice percentage of shoppers.
Malls tend to be friendly in this area as there are flat floors and elevators, but it is the small malls and individual shops that seem really difficult to navigate. Even some resaurants.
In my opinion stairs in business entrances should not be permissible as they are exclusive unless there is an alternate entry available.

Funding Fun ( Wheelchair accessibility)

Well I don't know about the readers out there but I have to say, finding funding is not and easy task. We recently tried to get funding for a wheelchair accessible van( an expense most provincial programs will not cover) and what a whoop-dee-do.

First off any charitable organization that would be potential help is a great place to start. Only problem is if you are in the middle income bracket good luck(unfortunately that is where the most people have debt and live paycheck to paycheck). The other problem is is that many of these organizations are "last resort" organizations meaning they would like you to try everyone else. This becomes a bit confusing as it is difficult to determine who to start with.

The next problem is most provincial programs only help with items that can be recylcled to someone else. A converted van is not such an item they say. So the frustration levels tend to go up and up.

After many months of searching and looking we came up empty. Local groups, provincial programs and charitable organizations proved to be quite a confusing task. It is hard enough dealing with the purpose for needing a converted van however add to it the extreme frustration of months of looking for help and what a task.

Don't get me wrong. All of these organizations are absolutely wonderful for everything they do but I really feel governments could do a lot more in helping people figure out where to turn. Especially in the middle income bracket. Follow the link to see a list of resources in Western Canada http://www.muscle.ca/fileadmin/Western/Services/Equipment_Funding_Manual-WC-Aug07-2009.pdf

And that's the take for today :)

Team Work- Oh how I miss you! ( accessibility and accommodation)

Not everything we do in life in regard to accessiblility has to do with the physical aspect of getting there. Caring for the emotional, physical and social aspects for people come from many people who CARE. In everything that I do I am constantly thinking of ways to help others. One commom theme that kept returning to me is TEAM!

Without a team to support an idea, it is very difficult to create change. Without change, we do not evolve. Well you get the idea. In order to help we must all band together for change.
If you think about it, I mean really think about it, how much effect do we have without the support of someone...or everyone.

In all my activities I am constantly creating little "teams" to help out a cause. However this only works in the theory that all team members will follow the plan. Many times we have made a plan to create a state of comfort or ease for my son and it only took one deviant person to derail that plan. Without all the players on board and helping out you end up in chaos.

There are many ways to derail a team plan such as "doing your own thing," deviating from suggestion, fighting for power and of course, creating a seperate plan appart from the team. Communication is the key to all success. Everyone involved in a team MUST be willing to give,accept and offer opinions, constructive criticism, ideas and thoughts. It is very difficult to find a successful team without these key components.

So many times have I ran into the problem of people thinking they were the "professionals" and did not listen to the team. Cooperation is a hard thing to find but like the diamond in the rough, once in a while you find a great team and that is where you get the success stories. Working together in unison for a common cause can bring great things when done respectfully, honestly and from the heart.