Wednesday, April 13, 2016

CRAIG'S QUICKIE XTENDER WHEELS- Spoke Too Soon Continued Pt #3

April 23, 2016
UPDATE:
We have been waiting to share what has happened since April 15th and now we can. A week ago when they took Craig's wheels into replace the spokes, April 15th, the new spokes that were sent just kept breaking even when they tightened them only a little. Not to mention the night before servicing, a 3rd spoke snapped off in the same spot!
Needless to say, I will be writing a full new article about how the demo wheels he was given to use temporarily, clearly have been improved regarding spoke installation and have not clicked the whole first week of use.
More on all that in the next Spoke Too Soon Article #4 

April 14, 2016 
GOOD NEWS UPDATE: Just now, an hour or so from writing this post, the Quickie folks said the spokes were shipped yesterday and should arrive tomorrow. They said they are still waiting for answers to our other questions. We feel bad for the person answering my lengthy messages!

Okay, it is now April 13, 2016. We are still waiting for some "action" on Craig's Xtender Wheels. It has taken longer to get responses from Quickie/Sunrise, it seems. We want to give them the benefit of the doubt. From what we understand, they had to contact the manufacturer and engineer. We do not know who that is. We now have been told that the spokes are not covered under warranty because they are a wear and tear parts. But, they said, an accommodation is being made. I will paste exactly what they said in their twitter message so I don't misrepresent anyone. (Whoever is responding for Quickie's social media,  the person we have been in communication with via  has been helpful and friendly.  it's out of their hands)
From: April 5, 2016
"Hi Anita and Craig, we apologize for the delay but had to consult with the manufacturer and engineering. Sunrise Medical has been able to source the spokes needed for this particular Xtender wheel. We will order some at N/C and send them to #### to use in the repair of the broken spokes. The remainder should be given to Craig for future needs. This is a one-time accommodation since "wear and tear" items and consumables are not covered under warranty. Hope this helps!"

What is frustrating is that Craig hasn't had any of the three pairs of wheels long enough to give them any wear and tear. In fact, it was the third pair, where the clicking happened again almost right away and he discovered the first semi broken spoke. It was repaired and then in only 2-3 months, two spokes broke completely and are hanging on literally, but the bend in the tip. So as thankful as we are that they are making an exception, providing new spokes, it wasn't his fault to begin with. Why would they even tell us that in light of all the clicking and spoke discovery. It tends to make you feel like you need to plead your case even though whoever made the wheels is at fault or is responsible. My husband doesn't exceed the weight limit. We found out when the problems happened, that there is a 250 pound weight limit on these wheels. My husband is 5'11" and isn't small. But thankfully, he weighs under that by more than a  few pounds. However, to be told they aren't under warranty if he was over 250, after the purchase was made is very bothersome. We now recommend, to ask as many questions as possible when considering buying any expensive devices. It would have caused us to possibly change our minds. 


However,  he does love the wheels in principle, when all is okay, but has been forced to wait regarding recommending them anymore UNTIL he knows for sure, what is being done by the manufacturer, about inspecting each spoke on the previous 2 pairs of returned wheels.  As well new ones, so future customers will not have clicking/spoke issues. Not to mention, to make sure, he is all fixed up. He/we would feel bad recommending them, if the same thing happens. Just looking for reassurance from the companies involved. We are now waiting for a response about that.

Today, April 13, we did contact the vendor and no one has received anything so far in the line of new/extra  spokes. The clicking is increasing because of the 2 broken spokes. Like we showed previously, CLICK HERE, if Craig fiddles with the correct spoke, the clicking temporarily goes away. But the spokes are still broken. It is difficult to trust when things are called into question, such as a wear and tear on spokes, even if they choose to replace them. It wasn't his fault from day one, wheel set #1, #2 and #3.  


Because someone asked us if the clicking issue had been resolved, that they want to buy wheels like these for someone but won't buy these ones if the issue isn't rectified. Wanting to give the company a fair chance, I did just send another message to Quickie to inquire about a more definite time of delivery of these spokes. As well asking them, what is being or has been done, to investigate the last two pair that were returned. 
Clearly, the clicking sounds then, matches what is going on now, so there must have been spoke issues all along, since pair one. But, we want to know for sure, if they found that out and if it will all be taken care of. Whoever the manufacturer is, they must be the ones to take responsibility. Hope it all goes well, so Craig can keep recommending these power assist wheels. Remember to ask lots of questions regarding any purchases like this. We never did, we trusted folks when we should have asked about all that at the time of inquiry/purchase.
On that note, until we know beyond all doubt, that this issue is going to be corrected we have to hold off recommending these wheels to anyone. 

Maybe our expectations are too hight. You decide. We have documented everything, dates included so others can make informed choices. We trust the source company will be able to give us satisfactory answers.
Just understand that it matters to us, what we recommend. And of course making sure my husband's wheels are working they way they are supposed to, we will post what we learn. We trust they will take care of things. They have so far...just taking longer this time.

He still recommends Quickie 2  brand manual wheelchairs, because he is about to get his 5th one and he's never had a problem with them.

Hope this helps anyone out there, seeking information on Xtender Wheels and hopefully, the company who constructs these wheels so they can correct the spoke issue.

Wednesday, April 6, 2016

WHAT IS MOST IMPORTANT TO ME, WHEN HIRING A PERSONAL CARE ASSISTANT...

If You Are interested in applying for the Posted HRDC Job Bank PERSONAL CARE ASSISTANT POSITIONS, information is at the bottom of this article. To learn more, feel free to read this article and meet my past/present PCAs.

Another great PCA we had, as will all these ladies,
we miss her too :o(
What Is Most Important When Hiring a Personal Care Assistant:
So many wonderful PCAs who became
friends. A blessing to our lives.
Yes, I am presently hiring new Personal Care Assistant/s. I thought it would be a great thing to share the process to some degree, in hope that might help anyone else, who is considering hiring their own care providers for themselves or for others. And at the same time, make this a tribute and thank you in honour of the many wonderful PCAs I have been blessed by hiring over the last 20 years! Hard to believe it has been almost 2 decade of being able to manage my own care.
First A Huge Dedication To My Past and Present PCAs.... 
For the past twenty years or so, finding girls with the right heart and attitude have been a blessing beyond words. Those of you who wanted employment that has great value and purpose, a position that involved/s, assisting someone whose daily physical life couldn't happen, without your arms and legs. Being able to accept, learn and take specific
Smiles and warms hearts, blesses my life :o)
directions on how that someone, say me, would like certain things done. In essence, filling in where my arms and legs, don't want to cooperate with me anymore :o) Thus enabling me to live in my/our own home, no more institution or being at the mercy of people I had never chosen.  Can't get much more meaningful than that. It is why I want so much for all of you to know how much you meant and those of you who are still with me at present and those who will be,
mean to me. We pray always to find the "right" girl when I am hiring. Time and time again, it is clear
that God blesses us at the right time with the right person. When it happens, I can't begin to express what it means to me. My heart is lighter and I get to meet another new person who has a willing and caring heart. A gift indeed.
Smiles and warms hearts :o)
Thank you, you guys, you have no idea how much I appreciate having such great people giving me a hand with little things to ginormous things. God takes care of me through your hands. May God bless each one of you and your families, moment by moment, day by day.  For those of you no longer here, we miss you smiling faces and are thankful for the great memories....
Without my wonderful PCAs I can't get in or out of bed!  Leon, is tired after helping me out, ha ha!:o)
A Daily Necessity:
As Leon (not our cat, use to visit)  can show you, without my PCAs I can not get into or out of bed. Because of my disability, I depend on the arms and legs of others, to assist me every single day of my life.
I will share some basic fundamentals when it comes to recruiting employees. This again, is what works for me.

Wanted to share some great photo/memories we have from over the years. To respect their privacy, I hearted out there faces unless, I thought it was okay. We miss ALL of these ladies and the many who we don't have shown here. :o)
Often we have some fun (that's me with the crazy hair!)
Smiles and warms hearts, make my
life so much easier :o) Leon's too (sadly he
passed away.)




We love this record long Employee, 8 years!  Smiles and warms hearts, make my life so much easier :o)

Confidentiality is important - the masked PCA! LOL
A Meaningful Experience
Before I share the biggest quality I seek, aside from the basics about having their own vehicle, be a non-smoker, live in our city and such. I wasn't to share this....
What is very important to me is that my PCAs have an enjoyable work experience. Never would I want them to feel uncomfortable, unsafe, or unsure about their work. Open door communication matters. If they know where my head is at, or what I am dealing with physically, then they can know better how to meet my needs. Hopefully, in some way aside from this being a job, I can meet their needs to make this a satisfying job.
So thankful for my "arms and legs."
The best end result to employing my PCAs, is if we become friends. Years ago, a well meaning family member told me regarding hiring, "They can't be your friends." They sadly didn't seem to understand.
In no way do I seek to hire "friends," but, due to the personal nature of what a PCA is all about and how valuable they are to my life, friendships can develop. No, i don't seek it, but it a welcome bonus of the entire experience for me and my husband, if it happens.




(Click here to see the previous article featuring one of my first and favourite PCAs!)   (And click here for the article the other day about my history regarding my PCAs.)



A pic of the dedicated PCA we had years ago too. We miss this lady a lot as we do all these great ladies who've blessed our home over these 20 years.

My #1 Tip On Hiring Personal Care Assistants/Care Givers
Finding that person with the heart to assist me as asked, in a kind, compassionate manner, able to listen (as talked about the other day), is an invaluable PCA to me.

Smiles and warms hearts, blesses my life
#1: Attitude, Ability To Listen, And Follow Directions Well.
Again, I can only speak from my personal experience regarding my 20 years of hiring my own PCAs. The number one quality I look for in a great PCA, is not a certificate or diploma. Experience can be an asset, but what matters most is finding someone who listens, who wants to learn, able to take directions well. 
All of my PCAs over the past two decades, who worked out great, were/are those with the right attitude.
Being my "arms and legs" involves daily living living tasks as
well  as p/c and other duties as needed.
Sure experience can be asset, but I have hired those with experience in the healthcare field, and I must say, if the applicant is not good at listening and following directions, their experience doesn't help.
All of my PCAs who do a wonderful job with a great attitude, have been those with a heart for it but mostly, with ZERO experience.


...it is all about the person's heart and attitude, not about a piece of paper.

Why is listening important? 
The ability to listen and follow direction well, is key to others carrying out tasks the way you want them done. Hence, they are being like my arms and legs. Enabling my independence, caring out daily life tasks the way I would,  if I could physically do it myself.
30 years ago when my then, best friend  was helping me one day.
How can I Know They Listen Well?
1. A Manner Of Application:
A tip I learned from a contractor years ago was that, he said he posted detailed directions on how to apply in the job advertisement.
He said that if they could not follow those few directions at the get go,  then odds are they would never be able to follow the much more detailed, important directions while performing the actual job. I have tried to follow that guideline ever since. For sure, there have been times when I felt lead to make an exception. I take it on a case by case basis. We all make mistakes. But, it is a good tip regarding the ability to discern if someone can follow directions well.
Also check to see if the application was completed as requested. That helps to see if someone is good at following directions well.
2. Phone call Matters:
A phone call is often the first contact made by an interested applicant. Just be mindful if they are listening to what you are saying, and if they talk without waiting for you to finish, or assume things without hearing you first. Those may be some clues.
3. Interview Matters: If you've reached the interview stage or if you do what I do, if I really was impressed with a phone call, I skip the application sometimes, and arrange an interview maybe, have them complete an application then. if that is what you want to do  then. You can tell when someone is a good listener. We all can really. Some of us are bad listeners and some of us are great at it. I am not the best listener, more of a talker really. But that kind of listening is important in a friendship.
The kind of listening we are looking for, is the kind that means your future PCA will be able to hear you and follow through with the directions they were given.
Keep in mind, some people get nervous in interviews, so be sensitive to that. When I talk about people not listening and therefore not able to follow directions, I means seriously not listening. Trust me, when you witness it, you will know. This isn't nervousness typical in any interview setting, when we meet someone for the first time and all that.
Watch for these clues, during the interview for example, if the applicant has a daydreamy look, they seem distracted looking all around, not really paying attention to the actual interview (trust me it has happened), that can be disconcerting. Once someone kept glancing below the table to look at their cell phone that kep ringing. This is a good sign for anyone hiring anywhere, if an applicant is interested in the position they have applied for, they will care enough to make sure their mobile phone is muted or turned off. Of course, sometimes people mean well and just plum forgot to do that. So be merciful if it rings or buzzes once and they rectify the problem and they are sorry. No problem.
Like I said, you will know what I am talking about when it happens. It is an obvious characteristic.
Without my PCAs, I wouldn't be able to  go to or get out of bed! 
3. Training Matters: If you had concerns from day one, by this time, once in the training process,  you will know for sure about their ability to listen well. Of course, I don't expect anyone to remember every detail. But based on past experience, we know when someone isn't paying attention to the directions they are receiving. I always make sure enough training time is given to be sure. But, there are those times when it is beyond obvious. You will know when the trainee isn't even watching what you are doing. You know, clues like that.
 In fact to give them the fairest opportunity.
Never Assume...
Never assume that the person will know what you want, or what you mean. You can never give too many directions. It is also why I also write a lot down prior to employment, to help the candidate make an informed decision and  once hired, to know what my expectations are and how to do some basic tasks and such. I want it to go well for both of us.
But, if they after repeated training sessions and lessons, and if it isn't coming together. It may not work out. How can you have someone you hired as a PCA help you out if they can't listen well, do the tasks. Some of us may have great personalities, skills in other areas that would make them great employees, but then some of us do not have strong listening skills. It isn't easy having to let the person know, but be sure to share their strengths so they can be encouraged. And then perhaps, maybe someone one other than me, may be totally fine with someone who doesn't follow directions well. Hiring someone to assist yourself or for someone else is a very personal decision. It all depends on what your needs are, what matters to you in a PCA. I just hope by sharing what I experience and value regarding this subject might helps someone else "out there" in a similar position. If you have any questions or insight of your own, please feel fee to comment below. :o)
The best end result to employing my PCAs, is if we become friends, a bonus. This great lady has been giving me a hand for more than 8 years so far. We love her. 



INTERESTED IN BECOMING A PCA?
If you are here because you saw the job bank ad, the information on applying is at the bottom of the page.please keep reading below...
Interested in a meaningful career as a PCA, please know that, what you need most of all is the heart to give folks like me, a hand. Aside from the basic qualifications below, if you read the above portion, you will have a strong sense of what is important in a PCA for me.
For other employers, they may have a different focus, so treat private home hires on an individual basis.
Someone who has a heart to help out someone, being my "arms and legs," able to let me basically be the "brain" to direct things the way I would like them to go. Always in a safe manner of course!  A great candidate for a PCA is someone who has no problem being given directions on how to do things.
But I have No Experience in Healthcare...
Yes it may help to have  experience, but in 20 years or so, I would say the majority of my past/present PCAs had no experience in healthcare/homecare/cleaning for others, etc.
On the job training, having the ability to follow detailed directions well, flexibility, common sense, compassion, a positive outlook on life, having the heart to care, a willingness to give me a hand - that is what I seek and that has worked out perfectly for two decades!
You have options, you can opt to work for someone like me, on Direct Funding - Self Manager, where you can receive training and get paid a very decent wage $19.00/hour in Ontario. Without having to pay for any schooling. It is a life long career, because folks like me require assistance through out life. It works out well with those who are in school (depending on their schedule availability), same with those who have other employment elsewhere.
As well, there are others who seek to hire folks to give their aging family members a hand. They too are seeking someone they can trust, who has the right heart toward caring
It is normal, for my PCAs to either work casual hours, to supplement income, raising kids, or those who have other positions or even private home hires like me, and have some availability that can be worked around to meet my needs and your's.
Other than a criminal record check, and other courses like First Aid, (options you can take on your own time and money but not required).
How About FOR ME?:
I am hiring right now!!
WHAT A GREAT PCA! WE miss her!

Applicants Must Be:
Willing to listen and learn, able to follow detailed directions.
-Be A female.
-A Non-Smoker.
-Have their own vehicle.
-Be trustworthy.
-Be kind.
-Be Caring and understanding.
-Physically able to assist me where my physical ability has diminished.
-Must be willing to provide a criminal record check if asked.

WAGE:  
$19.00 an hour 
Total hours to be determined - depending on availability- 20-30 every two weeks.
Mostly Morning shifts, some evenings and weekends.
Must live in Thunder Bay, Ontario

INTERESTED please Email:
walkingwayoverrated@gmail.com

In the SUBJECT write: APPLYING FOR PCA POSITION
Send a resume, references and a letter telling me about yourself.
Then I send a short application. Once all information is collected, I will arrange interviews for potential candidates.
Being my "arms and legs" involves daily living living tasks as well
as p/c and other duties as needed.

Being my "arms and legs" involves daily living living tasks as well
as p/c and other duties as needed.


Being my "arms and legs" involves daily living living tasks as well
as p/c and other duties as needed.




Being my "arms and legs!" So meaningful to me. I am getting to do 
what I can not do physically on my own, I am doing it through their hands.


Being my "arms and legs!" So meaningful to me. I am getting to do 
what I can not do physically on my own, I am doing it through their hands.



THOUGHTS ON CARE GIVING...

One of my first and best Personal Care Assistants I ever hired almost
20 years ago! Randi! Love her so much .
How appropriate, I get to write about being able to hire my own personal care assistants and share the process for hiring in hope to help others hiring for themselves or those hiring for others and also to help me hire someone :o)
I pray I get to hire  a PCA or two, who have all the qualities of so many of the wonderful PCAs I have now, as well as others through the years including, the awesome lady to the left. :o) Love  and miss her so much.  One of my first PCAs that I hired almost 20 years ago.
BLESSED
My life has been blessed by many wonderful ladies of all ages, who have essentially been my "arms and legs." I let them know how I would like my care and household tasks carried out and they learn, and carry them out to the best of their ability.
Including the early years (click here for yesterday's article about hiring my PCAs and History), when I was eleven, I received care from employees, (nurses and child care workers, ) first at the institution and then starting at 17, my first apartment buildings (the SSLUs). Even though those first years left me with no say in who will care for me, there were many care givers and PCAs that I valued and
That's me at 11 in the Dining/living area of that
 residence I mentioned.
considered my friend, even as family.
It was always so sad, when you would bond with those super nice care providers, but then they had to move on to other life events. Even years later, I refer to some of them as my "mom's and dad's). They will never know how much they impacted my heart. Yes, I have a great Mom and Dad, but these are the folks they entrusted my care into because they were doing what they believed was best for me. They didn't get to handpick any of them either. Trust was the order of the day.  I know all things happen for a purpose. It was best for me to move away. I did go home every other weekend and holidays back then, but these people were my other family. Yes there were some not so nice employees, but I focused on the ones I loved. Living with so many children, they too were like siblings almost. Not easy when so many, come and go in a young life. I am guessing these days, with life the way it is, a lot of kids have grown up with many a care giver passing through.
What I am trying to say is,  please know that if you have a loved one in a healthcare institution or in an SSLU like I was in, there are many wonderful care providers.
Two great fellow residents, from the late 70s, who sadly
have passed on. Loved Tracy and Billy!
DON'T BE AFRAID!
It is so important to make sure when there are ones like I mentioned yesterday, the opposite of above, to not be afraid and take the proper steps to improve their behaviour toward those they are intimidating. Our hearts break when we hear stories from places where I once resided (SSLUs), door to door care providing companies, senior care facilities and hospitals, where nurses and other care givers or family members we know,  and have even witnessed ourselves, being treated badly, receiving neglectful care.
We encourage anyone who experiences or witnesses such behaviour to speak out. Seek upper management, or depending on the abuse or lack of proper care, call authorities, the media....don't be afraid.
There was a time, when I was afraid and wouldn't speak up because it was too scary thinking about having that same person return, to assist me, upset, because I reported them. It took a huge move, as an advocate, to do a 360 and speak out. I discovered that many bully types, often back down and even break down emotionally with tears when confronted. Often, it is the bully and the controlling types who seek work in places where silent dependant folks reside. Again, we have seen it happen to others and our selves.
All I can say is - DO NOT BE AFRAID! Speak out to someone safe or have someone you trust advocate for you. And if you witness neglect and abuse from a care provider, as a fellow employee or family, friend, even as a roommate, report it. Often there are folks who are vulnerable, and timid, even unable to speak or be aware of what is being done or not done to them. And doing all you can to help bring it into the light, matters. We must look out for fellow citizens. Not to mention, anyone who can act that way with vulnerable others, seriously need help. Perhaps they were abused as a child and never told anyone. Many transfer anger to those who are weaker than them. Regardless of the whys, for sure they need to stopped, even pulled from their position until and if they can change.
I know this is a serious topic, but it has to be shared with the intent to help anyone who has ever felt this way but didn't know what to do.
As often happens when I write articles, I started out writing about how to hire PCAs and all that, but ended up talking about the other side of the subject, addressing neglectful and abuse by care givers.



My number one care giver is my dear husband,
always helping me out where he can.
Next article will definitely be about what to seek when hiring care givers, be it for your self or a loved one or friend.










Tuesday, April 5, 2016

CRAIG'S QUICKIE XTENDER WHEELS- Spoke Too Soon Continued Pt #2

http://www.sunrisemedical.com
Craig just had a seating clinic today because he is in need of a new wheelchair. Because he has always used Quickie brand manual wheelchairs, he is hoping to get what would be his 5th Quickie wheelchair. I too loved my pink manual Quickie chair, but Ineed a power chair so I had it only as a back up.
In Ontario, for anyone who doesn't know if you live here, there is a government program called ADP (Assistive Device Program). If approved, the client is eligible for seventy five percent coverage for mobility devices. I am not sure about anything else except coverage of wheelchairs and the cushions we need for them.

Less than a year ago, he was blessed with his new Quickei Xtender Power assist wheels. Here is the day he got to use them for the first time (click here.)

He is still loving them. But if you have been reading this blog at all, he is on his 3rd set of wheels under warranty. I won't repeat all that has happened, the links to all the articles are in the more info portion below the YouTube video. Right away this familiar clicking happened again, but he finally saw it was because of a dead spoke. Here is part one of what has recently happened with his spokes. Click here:
Spoke Too Soon  so see that part.
Today, besides sharing the exciting news at hopefully getting a new manual wheelchair, I wanted to post a video we made last night to record the clicking sound and how the spokes are affected when he just squeezes them....watch here:

My hope again is that the company, Quickie/Surise Medical will be able to learn about the specific problem by watching this video. We believe there may be a fault in the spokes since it is his third replacement pair, with the same clicking sound. Not sure, just keep trying to figure it out so all will be fixed and safe.
We are presently still waiting for a response about getting the now two broken spokes fixed. Craig keeps loving his wheels and isn't too worried about whether they will be fixed. Me on the other hand, I am happy for him about the way they help him so much. And I am glad they were taking care of the issues the last couple of times. It's just the ongoing issue that concerns me and wondering why the manufacturer of the wheels apparently haven't told our vendor what to do about the broken and disconcerting spokes. I am just a tad paranoid, I pray all will go well for him. He really is blessed by the Quickie products and I want it to all be taken care of for good. Can't tell you how much it stresses me, when I hear the click. I just ask God for help to not worry!!



INDEPENDENT LIVING: Becoming A Self Manager Of My Own Care

A Work in progress, my unfinished drawing of me and 
one of my great my Personal care assistants! 
by Anita Harris Berglund
If you follow WWO at all, you would know that I hire my own personal care assistants. Some other titles for this position that I am familiar with are Personal Care Attendants or Personal Support Worker.
Big Decisions To Be Made
It has been about twenty whole years since I was blessed, when our Ontario government decided to begin a pilot project to enable folks like myself, to be able to hire and self manage our own personal care.
Initially, our entire province began with only 80 recipients. I got to be on the interviewing committee that was to select Direct Funding applicants from my region of the province. The main qualification was and is, that you are able to manage and direct your own employees.Direct Funding covers the administrative expenses such as hiring bookkeepers if we choose to not do our own bookkeeping, and other related costs.
To also interview, an administrator from the then pilot project came to our northern Ontario community, along with some other admin folks and "consumers" like me, and we met together for three days (if I remember correctly) in a row.
On My Own
At that point, I had lived in what is called a Support Service Living Unit. What is that you ask? When I was seventeen, I was able to move into my first fully wheelchair accessible bachelor style apartment,  where there were Personal Care Assistants in an office, on site, 24 hours a day. It was a thrill to be able to live on my own, after spending six years in an 18 bed residential institution for children with physical disabilities. It was fun for year one, but as I matured into a "cool" teenager :o) doing my own thing reigned supreme. What 17 year old wouldn't want to live all on their own! Well it mattered to me.
The guys who had lobbied and fundraised, to build and manage the first SSLU in Canada, allowed me to move in a year under the "legal" age in good faith. I was only seventeen and in grade twelve. I will never forget how wonderful and free I felt my first day in my own apartment, all on my own! Wish I could say I was on my best behaviour. Freedom came at a price and to make a really long story short, Jesus Christ saved my life from self destruction. But that is another story for another day.
A favourite PCA I got to work with when I lived in Winnipeg,
Canada for a college internship in 1990ish.
So to be clear, an SSLU is a wheelchair accessible apartment unit that has 24 hour personal care assistants on site for a number of tenants living with physical disabilities. We are assessed according to levels of care needed and then the number of employees working at one time was assessed accordingly. Sadly I have heard about funding cuts and present tenants are not getting the care they would like, when they would like it. As with all not for profit, government funded organizations, budgets are tight and must be followed. To me, it was better to have to wait for someone, living independently,  than to live in the institution I had been or live at home with my folks. I love them, but at seventeen I thought I knew it all and wanted to be on my own as soon as possible.
Do I? Don't I?
During the Direct Funding interviewing applicants time, I was asked if I wanted to apply for myself. Because I had been so use to being able to access assistance fairly fast if I had say, a bathroom emergency, I was too nervous to say yes. So, initially I said no. As the three days passed, I changed my mind a couple of times and ended up submitting my application. (Did I tell you I was diagnosed with ADHD about ten years ago! Hence the ping pong ball bouncing brain effect)  
What changed my mind was ongoing issues with some not so nice PCAs, who worked for the SSLU company where I resided. Don't get me wrong, during my six years as a tenant in three different SSLU apartment buildings with 24 hour PCAs, there were some wonderful assistants. Sadly though, it only takes one or two folks who can really intimidate you and make getting care very uncomfortable. Not ever having the option of who would meet my physical care needs, it was (I think) Divine intervention during the three days of interviewing, that I experienced one of the most
I got to go on a trip to our capital city thanks to Direct funding
 enabling me to bring along one of my first, favourite PCA's, Randi!
negative moments ever with a PCA, that prompted me to apply for Direct Funding.
However, fear of the "what if's" over took me and I withdrew my application within those three days. And then something else happened with her, so my frustration escalated, pushing me over the top. Immediately, I resubmitted my application for Direct Funding the next day.
It helped that the manager of my SSLU offered a back up emergency plan, so I could hire my own PCA's and have access to the on site PCA's with an emergency pager,  should a bathroom emergency arise. With apprehension I agreed to push on and follow through with my application process. It was so meant to be, because out of my entire province, only eighty people would be accepted for the pilot project and I became one of them!
Experience, An Asset...
Thankfully it helped a lot that I had a lot of experience directing my care in my home, with employees that I didn't get to choose per say, yet sort of. During my SSLU years, I had began helping with hiring PCAs for all of us in our building, by sitting in on interviews, offering my opinion, whether to hire them or not.
Flying!
Experience interviewing, equipped me with knowledge that most don't get to have first.  My original employees blessed me beyond words. In fact, all my fears about having bathroom emergencies diminished, when once, I had to press my emergency pager (arranged by the manager of my SSLU) one day, to go to the washroom. The very same PCA, that had sparked me to frustration enough, to apply for Direct Funding in the first place. She just happened to be the one who responded to my call. She came to my door and asked if I could wait 20 minutes? The arrangement I had made with the manager prior was, that I would pay a monthly fee, to access their employees incase of an emergency. Then pay per hour if actually needed. I told her "No, it is why I pressed the pager!"

I think it was it was meant to be, that the very person who upset me so many times, was the one to respond to my call in that manner. Why? Because it helped me to learn to hold it in, with all my might (my bladder that is) and wait for my own PCAs to make it to my apartment. The frustration and uncomfortable feeling was not worth enduring ever that again. So I cancelled my back up emergency service plan, cutting the safety net and flew out of my nest! Thankfully, I believe the Lord provided the option.
Because of D/F I have been able to live
where my dear husband and I want to.
Freedom
Never again, did I not have a choice of who was to provide my personal care. It also meant that I would be able to move out of the SSLU building and live wherever I wanted to. Of course it had to be wheelchair accessible. But until Direct Funding was available, we all had/have to live wherever the 24 hour PCAs on site were. Of course the SSLUs are a great system for many who want to live independently, but do not want to fuss with recruiting, hiring, managing, and training their own personal care. And it was a huge blessing for me for six whole years. The ability to live independently because of the ability to be assisted with other people's "arms and legs" so to speak, is an incredible experience.
We know some folks who have been hit with sudden physical disabilities, accidents or aneurysms and then had to live in the hospital for 2-4 years, waiting for an accessible apartment (SSLU) with 24 hour, on site personal assistance.
So Thankful
In our country, we often take for granted services that are available for persons living with various disabilities, that in other countries that would never even be considered a possibility. We have a friend in Peru who has no funding sources for his wheelchair, personal care and other related supports. He told us he would be dead if he was unable to work full time. Now working full time is wonderful, if you are able, but this fellow physically, has a progressive weakening like I do (Spinal Muscular Atrophy 3) and working full time for him, is a huge deal. I know for me, there are days when a small task, can drain most of your energy for the day.

Working is the only way he could scrape enough money to pay for the basic needs for his life. Literally gathering any last bit of energy to work in order to save his life. A totally different mentality than many have in our continent. And even then, he was unable to afford a new battery for his power chair, (here they are about $500-600 CDN) and he primarily had depended on his family assisting him. But his family was aging, and his primary care giver, his dear mother passed away. Needless to say,  he was experiencing fear and serious concern regarding how to obtain actual people to help him out and fund care for his daily living needs. Hearing his story,  helped to open our eyes to see just how blessed we are to live where we do.
http://www.yelp.com/biz_photos/joni-and-friends-agoura-hills?select=Eywp_vu2FgZq9VCRU__1xw
Taking For Granted What Others Can't Even Consider
In many countries never mind receiving personal care, owning a wheelchair is something not possible. Joni Eareckson Tada's Wheels For The World, do all they can to provide mobility devices to places where physical mobility may be sliding around on the ground using your arms or attaching some wheels to a plank like a skateboard, or never being able to leave your bed. I can't ever imagine that. I am so thankful to God for the abundant blessings in my life.
Valuing Life
We know depending where you live in this world, living with a physical disability can mean lives opposite to our lives in North America. In some countries where having something like a hearing issue, a child can end up abandoned, living in an orphanage. Some countries, like I mentioned, there is no access to personal care, unless it is family, or mobility devices. And tragically, in a continent where we have many supports and access to equipment and care, even if it has to be in a hospital, there are North Americans who choose to actually abort pregnancies when they discover their baby has a genetic disease, such as mine. So even though we have access to care other countries don't know of, some ignore those blessings including the blessing of life regardless of abilities and make tragic choices.
It is by sharing our stories that hopefully, we can help those who take so much for granted, to treasure life no matter how their bodies are being affected by disabilities and illness. For me, it is the ability to hire and manage my own Personal Care Assistants so I can live alone with my husband. Not to mention the ability to receive funding assistance for our wheelchairs, cushions and healthcare. Be thankful Canadians!
Share Your Story, Questions, and Thoughts below. We'd love to hear from you.
Thanks for stopping by!

WAY COOL VIRAL VIDEOS INVOLVING PERSONS USING WHEELCHAIRS!

Craig and I have been using wheels for legs for decades now and admittedly, we have had many an adventure! Okay, he makes doing laundry look fun! Well, I drew him looking like he has fun! 
The drawing I did, is supposed to be my husband Craig, having a laundry adventure!
 Recently a dear friend sent us this video from a website called VIRAL VIDEOS and it was a really cool invention that enables a manual wheelchair user pull up into this three wheeled motorized system that converts your chair basically into a three wheel motorcycle! Wanting to share this great, adventurous looking mobility device, I Googled the subject and discovered a whole list of really neat viral videos featuring our fellow users of wheelchairs! Some pretty cool adventures as well as meaningful and inspirational ones!
- There is a dude who created a way to plow snow using his wheelchair, click here to see that one.
- A goat that needs an assistive device! Click here to see that.
- A lady who "Freestyles" in her chair. Reminds me of my nephew when he skateboarded as a young one. Click here to see. 
- And a person who is a paraplegic who goes bungee jumping in their chair! Click here
-A dog pushes a person who uses a wheelchair through flood waters! click.
 For the rest...
Take a look at this cool site CLICK HERE to see the collection at: VIRAL VIDEOS: WHEELCHAIR


My adventure in a wheelchair, power tilting so I can nap!!


Monday, March 28, 2016

CONSTRUCTING TOTAL WHEELCHAIR ACCESS IN EL SALVADOR - Joni AND Friends

http://www.joniandfriends.org/television/total-access-el-salvador/
Watch another inspiring documentary produced by Joni and Friends Ministry. 
My personal hero Joni Eareckson Tada's ministry. 
Constructing a Wheelchair accessible Hospital, School and a Camp  in El Salvador. Click here to watch... 

Monday, March 21, 2016

CRAIG'S QUICKIE XTENDER WHEELS - SPOKE TOO SOON?


the 2  spoke ends that just snapped off this weekend
Spoke Too Soon?
Craig has been enjoying his third pair of Quickie Xtender power assist wheels. His third pair that were replaced under warranty in less than about six months. See links down below to see what you missed. 
The last pair were discovered to have a seriously loose spoke causing the clicking sound in replacement number 3. Thankfully, our vendor got it repaired  under warranty and all has been smooth cruising for a few months now. He does love using these very useful mobile  devices. 
Then this weekend. two spokes suddenly snapped off in the same spot in one day. 
We have made a video and took pics to document what happened. He was so enjoying a whole few months with no concerns after all the previous adventures you can see in the links below, 
Thankfully we are not worried because Quickie, Sunrise Medical and our vendor/dealer have been  repairing and replacing when needed. We just wish the designer/manufacturer will learn what is needed to avoid any future issues with other customers and even my husband. Hope these details help them.

Remaining spoke so far is hanging on by tension

























To see the coinciding video Click here:


We have been covering the Xtender Wheel Experience in previous articles here below, if you want to know the details. Just click on the titles themselves.

Final Update On Craig's Quickie Xtender Wheels... 

Not Again! Craig's Quickie Xtender Wheels- Update what? Number 5?: 

Craig's Xtender Wheels Clicking Update #3- Already! - 

Craig's Xtender Wheel Update...Four Months Later.... 

Craig's Xtender Wheels- Update #2 - 

Yay, Craig Gets Relief - His First Quickie Xtender Power Assist Wheels! 

Some spoke tips we want to get checked, you can s
ee they are not all flush and secured well
These articles are to help anyone else possibly having concerns with their wheels or for those researching the topic.

Craig loves them and I am still happy to see him be able to have such a great device that helps his shoulder so much.

He does recommend this brand of power assist wheels to anyone who sees him. 

Anyone else who may have this problem? Let us know. 

Comments? Thoughts? Insight? or Questions about mobility devices or Quickie Xtender Power Assist wheels, write it down below. Subscribe to stay posted.