Hopefully given time we will be able to test one out. I am fearful of falling every day. It is a constant part of my life for almost but not quite 5 yeas now and it can be exhausting.
From the moment I wake up, it feels as if I am trying to balance on top of an exercise ball. I am not always sure which way my balance will be thrown when it goes off-course. When it does, it could be an uneven floor, wind, or exhaustion that gets me. I usually end up against a wall, on the floor or playing a painful game of twister with my crutches.
Crutches and an occasional pushed wheelchair however, have been my saviors in the mess. Unfortunately, regular walkers with wheels fall out from under me while those without are too difficult to move. Canes on the other hand have not enough of a handle on them for me to rest against.
The Life Glider might not work for me, or it might be the best thing that I ever encounter. If I never try, we will never know. But I would love the opportunity to at least see either way.
Besides helping reduce the fears associated with falling and the wrenched elbows that come with falling while you are using forearm crutches, the Life Glider can help reduce walking-associated fatigue which occurs to people like me.
So hopefully in the future we can try it out, I am quite excited by the idea.
We had our first visit to a Pain Clinic in Thunder Bay last week. Well it’s my first visit to one and Juliet had visited one in Ottawa without being able to finish the program due to her Chronic Vomiting at the time.
The experience was great. This was sort of an assessment / intake before the Pain Clinic Course that we will be attending in the fall.
Juliet was really happy because he was able to do all the different tests on her like the sensory tests that the past Clinic was unable to finish because of her pain, even though she told them to keep going they pretty much refused.
At the end of the day she was beyond worn out and even a few days later she is still having a lot of fatigue issues and pain from the vibration tool he had placed around her ears / skull. But she is in very good mood and high spirits.
The biggest conclusion that we found was her nervous system is completely out of sync. One side of her body was hotter and more painful where the other side was colder and less painful. This was a big important discovery for a doctor to see and understand it.
The biggest solution that he offered for therapy was swimming. Sadly with us living so far north in Ontario, we don’t have an Indoor swimming pool to be able to really accommodate her. His second suggestion was pretending to swim. We sadly are still unsure outside of mentally pretending how one actually swims out of water.
From what we understood from the swimming besides the benefits of exercise portion of things, the body would help provide micro massages all over her body and help stimulate the nervous system. The big thing also was that it be like almost floating in space as she could last longer through the therapy.
Just a note that Juliet has never been able to survive through hands on massage / physical touching therapy and normally causes way to much pain and then vomiting.
The great news and also not so great news is starting in Late September Juliet will be attending 10 sessions at the pain clinic once a Month on Mondays for 3 hours in the afternoon.
The bad news is we have to drive 800 KM’s round trip and as much as I don’t mind driving that long and in fact would drive her to the other side of the planet, It’s a bit hard on her body quite a bit. In fact it’s so hard on her we actually drive there and let her rest for the night. We go to the appointment the next day and then we leave the following morning. Meaning we are kind of stuck 2 nights at a hotel and 3 days in total.
With all this being said and done it only gives Juliet 4 days to recover till we are back on the road again and it’s been 5 days since we were in Thunder Bay for a 30 minute appointment to give you an idea and she is totally worn down.
Our biggest concern of course as well is mental fatigue and the classes themselves. From my understanding they are there to learn and do mental and physical activities. We asked if I can partake being her spouse and caregiver and they seem fine with it, but there could be some complications with it. Sadly there might be someone uncomfortable to having an Able Body person attend. Sadly if this happens it means Juliet is on her own and we both know that will lose a lot of valuable education and information that could be used to make her life better.
Either way, we have not been told yet, but we were warned that is might happen sadly and I don’t really blame that person. Maybe if possible they will let us talk to the person if they were uncomfortable about it and I can insure them if they were willing.
We still look forward to fall Pain Clinic and I hope I can partake in it even if it’s from the sidelines. The classes are going to have 30 people in them so it might be a bit overwhelming but will see how it goes.
Juliet was asked to focus on one major area first. Juliet has decided to work on her facial pain as this causes her the most problems to the point a bit of air hitting her face in a movement can be very debilitating at times. She is hoping if she can get her facial pain under control, that she could get better sleep and have improved mental functionality as well as more stamina to be able to do more in her days.
So this is a really exciting event for us and I look forward to talking more about the experience once we have finished a class or two.
We just had our Occupational Therapist (OT) visit us the other day. Juliet was quite nervous the day before because it was a male OT and she was worried that he would not take her seriously. Thankfully he was a very decent OT, but sadly our main concerns were not able to be dealt with.
We have wanted to get Juliet a Powered Scooter for many years now. We needed to see an OT for this, but sadly it was taking a long time due to a computer error the Doctor made and not realizing it till about 14 months later from the request.
Long story short Juliet has extremely limited movement around the home and outside. Juliet uses Forearm crutches that she can use some days less then 15 seconds before slamming her body against the wall and other days where she can use it for 10 minutes before fatigue or pain takes her out. On the really bad days Juliet ends up crawling on the floor to get to the bathroom, kitchen, etc.
Because of Juliet’s Pain and Fatigue that is caused while walking, it ends up killing off any and all adventures outside our home. To give you an idea since we moved, Juliet has never left the home in 16 months on her own and this means even into our backyard because of the fall risk. You can understand the reason in needing a Scooter now when you really start putting that into perspective.
So our hope is that we can get a Powered Scooter to allow Juliet to be able to be more independent and give her the dignity she deserves and let her be able to leave the house and explore our backyard or even go on further adventures.
Before we go on, I just want to state when I say she is a fall risk that she ends up falling against the wall’s about a dozen times a day on her 4-5 trips a day out of her bedroom. Without walls she would be down for the count and even that does not always help her from taking a dive into the hard floor. So as you can see going outside in the wild without someone with her at all times to catch her is impossible and beyond dangerous.
After a very long pleasant chat with the OT, we ended up learning that we can’t be accepted for a Powered Scooter or a Powered Wheelchair because Juliet can use Forearm Crutches for 15 seconds and her disability seems to be discriminated against because of her pain tolerance.
Can you Imagine being a women in your 20’s who enjoys shopping, but instead bound at home or in the car because simply don’t have the energy and pain tolerance to be able to crutch around in the store? That is what Juliet suffers from each and every day. I can push her in a cheap wheelchair but then we can’t actually buy anything as I can push her and a shopping cart at once… We know, we tried it more then once.
Now keep in mind the OT rejection is based on the criteria of Assistive Devices Program (ADP). So I decided I needed to learn what the criteria is and sadly it was quite a short requirement and pretty much said you needed to use it within the home itself daily.
Basic Mobility Requirements: Funding is restricted to those Devices that meet the Applicant’s basic mobility requirements as defined by the ADP for funding purposes: The Device must be used on an ongoing daily basis. The required and intended use of the Device must be to provide mobility on an ongoing daily basis within the Applicant’s place of residence and to gain entry/exit from the Applicant’s place of residence. An Applicant’s place of residence may be a home, apartment building, longterm care home, chronic care facility etc.
Right off that bat Juliet has enough energy to normally be able to get around the home besides going into our basement. So instantly she is disqualified. Even if we lied and we are not those kind of people, so it’s not going to happen. We simply just don’t have the room / layout for a Powered Wheelchair let alone a Powered Scooter.
Non Eligible Mobility Requirements: The Program does not provide funding for equipment used intermittently or as an alternative means of transportation (e.g. substitution for car, taxi or bus). Funding is not provided for mobility devices, including components, used solely for:
Travelling to and from destinations in the community
Recreation and social activities
Training, exercise or therapeutic purposes
Feeding, sleeping and other non-mobility related activities. Source:health.gov.on.ca
So ignoring the fact this list pretty much removes every single usage known to person… Lets go ahead and take it one step at a time piece by piece and see what we can come up with.
Pain management: This one has to be the biggest joke for those with Chronic Pain like Juliet. She has pain that is so bad that she can blackout if she does not fall and smash her head in first. I don’t like using words like discrimination but I feel this sadly fits this for those who suffer from Chronic Pain and who need devices to get around.
Travelling to and from destinations in the community: So you can’t use it to go to your mailbox if it’s outside your home, like at a community mailbox. You can’t go to a local community event down the street and you also can’t use it to visit your neighbors right next door as it’s a destination in the community…
Recreation and social activities I’m almost 100% sure the person who made this list up has never met a disabled person before or has some sort of grudge against them. So let me get this right, someone with life time disability should not be attempting to get a Scooter / Wheelchair to engage in recreation and social activities?
Post-operative needs: This one makes some sense but I do hope there is a temporary program that is offered to allow them to be more comfortable while recovering.
Training, exercise or therapeutic purposes Training & Exercise I sort of understand as it falls back into sort of the Post OP temporary needs again. The thing that concerns me is the therapeutic purposes… I assume a Lawyer did not write this nor a doctor… Lawyer knows how to use a dictionary and a Doctor knows that therapeutic also means a treatment and a therapy. We are contacting an Occupational Therapist to be given a treatment to help Juliet to not crack her head on on the pavement.
Work, School, Sports I can sort of understand the Work part as if you can work you can also save up and buy a Scooter honestly. You could use another form of transportation temporary like a City Buss, etc till you can buy yourself as Powered Scooter. That being said School, and Sports seems a bit silly. Just think about Juliet’s conditions and then having to navigate a school all day. She can’t under her own power move a manual wheelchair either, so now someone in the school has to push her around? How much is this costing the tax payers for 12 years of education?
Feeding, sleeping and other non-mobility related activities. I can understand this. Buying a Scooter or Wheelchair just to eat in and that is it would make a lot of sense of not being very cost practical for such a device.
What Juliet could be using the Scooter for, outside of the list above:
Getting around outside the home. Visiting me in the backyard garage or visiting me and taking part of activities around the yard.
Using the Scooter inside large buildings and Stores. Outside of her using it to travel to a store, she can be use it in the store to be able to interdependently buy things and actually pick up items and move them around. Right now she can’t hold items with her forearm crutches and she can’t push a shopping cart around either. Right now Juliet can’t partake in shopping at all besides walking beside me and even then she runs out of energy before we make it through the store and has to go sit in the car like an animal.
Mental Health. Not being able to leave the home and not having the dignity and independence takes a big toll on the human mind.
Doctors Office. Our doctor’s office is really big in size as it’s a mixed Hospital as well as the Clinic. Last time we went it took Juliet over 15 minutes to get from point a to point b where it took me about 30 seconds because of how much fatigue and pain she was suffering. She wanted to be independent so while I filled out paper work for her blood work she went to the office where it’s done and I found her almost at the office doors about 15 minutes later.
In the end the OT suggest to pretty much beg on social media for a used Powered Scooter. He did not say the word beg, but he said ask for a free one in your town social media like Facebook. He told us that the Batteries would be more likely dead and the costs would go up. The last thing we are going to do is beg for help in fact this only motivating me to spread awareness to the issues and concerns and share this with others and hopefully help fix the system in the long run.
The OT also suggested using charities, but they would only cover part the cost and we would have to pay for the rest. Downside is we are poor we just don’t have said money to cover the fraction of the cost right now, but it’s an option down the road if we must go that route. You also have to apply many many times to said charities to even be considered.
We thank you for taking the time to hear our story and thoughts on the situation. Honestly it’s quite heartbreaking to have such a modern society in 2019 reject someone the chance to be able to leave their home and be part of society more. Hopefully we can all do something about it in the long run and give people the dignity and independence they deserve and require.