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CBC
03-08-2025
- Health
- CBC
Why it's funny/not funny that I have to jump through hoops to get medical equipment
Social Sharing This First Person article is the experience of Alex Lytwyn, who lives with cerebral palsy and is a disability advocate, writer and small business owner of Willpower Media. For more info rmation about CBC's First Person stories, please see this FAQ. You can read more First Person articles here. For people who have mobility issues, it seems counterintuitive — and almost comical — that physically disabled citizens often have to jump through a lot of governmental hoops to access things that could improve their lives. When a person who has a physical disability and is on income assistance needs a medical device, it is an extremely long process to get one. Any medical equipment you may need has to be requested through a branch of government called DHSU (disability and health supports unit). That's not as easy as it sounds. First, an OT (occupational therapist) has to meet with you and evaluate your need for the equipment. Then, they have to make a report about how this piece of equipment will benefit your life and send it to the DHSU. It's important to keep in mind that the person reviewing the equipment request has no real idea why or how this piece of equipment will enhance your life. I think they're concerned with how much it will cost. After that, it can take months for the department to make a decision. If the equipment request gets denied, it's damaging on multiple levels. It hurts because you do not get the much-needed equipment and it hurts because you know that life — instead of getting a little bit easier — will continue to remain difficult. I have been denied what I consider life-improving equipment, because the person reviewing the file does not think it will be useful to me. How the heck does that person have any idea about my life or the equipment? For example, when I get a new power chair, it does not come with a backrest or seating. Both of these items need to be applied for through DHSU, which means I actually have to make a special request for them. Naturally, my occupational therapist applies for the backrest and seating that is best for me and my posture habits. But if my application is denied, the only option for me is to get something that's not suitable for me or my posture, meaning the 12 to 13 hours a day that I spend in the power chair will be much, much more uncomfortable. Clear and concise request writing is key when it comes to asking for medical equipment. The OT has to write a report that will make the person who's reading the request feel the need for the equipment. Over the years, all my occupational therapists have been awesome. They go back and forth, often writing multiple reports for the same item. They have countless phone conversations with the provincial department, arguing on my behalf. This all takes a ton of time and a lot of back and forth. Sometimes it works and sometimes it does not. Now sure, there are times when the written word can go a long way in understanding a need. But when it comes to disabilities and medical equipment, seeing how the equipment would benefit the individual would help. This could be done in person or virtually. They need to see for themselves — first-hand — why this equipment is needed. Living with a complex disability comes with enormous challenges. It's a shame that sometimes it feels like the government seems intent on adding to these challenges, instead of helping clear a path to a successful life.
CBC
18-05-2025
- Health
- CBC
It's not just the fever that plagues me when I'm sick, it's the loneliness
Social Sharing This First Person article is the experience of Alex Lytwyn, who lives with cerebral palsy and is a disability advocate, writer and small business owner of Willpower Media. For more info rmation about CBC's First Person stories, please see this FAQ. With the opening of my eyes, today feels different. I am used to the normal aches and pains that come with cerebral palsy. But this feeling is intense and is taking over my entire being. I have the flu. The fact that I was thirsty during the night but was unable to have a drink means my lips and throat were dry and sore, and this morning, I am still so thirsty. With the combination of me coughing, sneezing and sweating all night, my sheets are disgusting. My stomach is also in knots and my head's spinning. But there's nothing much I can do, except to try to move on with the day. One aspect that makes me feel really sheepish is that my helper also has to deal with me and everything that comes with this situation — not an easy thing to do. To their credit, they say nothing and do their best to put me at ease. This starts with something as simple as a warming smile. All I want to do is go to bed. This is not an option. - Alex Lytwyn Then, in order for me to get situated properly, I have to be put into a lift. This is done by rolling me into a sling, then hooking up straps. Feeling like a bag of mud, the last thing I want to be doing is getting rolled back and forth. Next step is to be lifted up and transferred. As I rise up, my head starts to pound with pressure. After what feels like a very long time, I am placed into my power chair. As the day progresses, my helper is with me. Throughout the helper's time with me, they assist me with everything that comes with being sick. That means all the everyday tasks, such as using the washroom, making tea, blowing my nose, etc. But when it's time for my staff to leave and their shift is over, I'm now alone. I need a drink, but the straw falls out of my glass and onto the floor. I go to put a cough candy into my mouth and I drop it. I sneeze — what a mess. My fever spikes, and I am unable to take any medications. Adding to everything is, because I had a cup of warm water right before my helper left, now I have to use the washroom and nobody's here. All I want to do is go to bed. This is not an option. When nobody's here to assist me, I have no other choice but to sit in my power chair and wait for the help to return. 'Need helping hands to thrive' After what feels like one of the longest days ever, bedtime has arrived. I am helped into bed, wondering, thinking, coughing and trying to breathe. My helper asks me if there's anything else I need before they leave. I say, "No, I'm good, thank you." As soon as my front door closes, my mind starts to race. For the next 10 hours, I am alone, with no way to take care of myself. The darkness of the night is heavy and I can only hope that morning — and my helper — both come quickly. Having to be alone is something that has been a big part of my life. And ever since my beloved service dog Fanta passed away and then I broke both of my legs, having to be alone has really increased my anxiety. After about a week of anguish, my flu starts to dissipate. Just as life starts to go back to normal, I'm hit with another gut punch. The flu that took me over has enveloped all my staff. Everything has come full circle. Now that they all have called in sick, I am once again alone. Throughout my years, I used to think that the only way that a person could get tired was in a physical manner. Nothing can be further from the truth. When the soul is in a constant state of worry and concern, energy can be difficult to find. And being sick drains my energy levels even quicker than normal. It must be recognized that disabled people can be alone, but need helping hands to thrive.
