Once again it feels like just the other I sat down and got stuck into writing a blog, but in reality it’s been awhile since my last one. For me life had been in this weird space of both carrying on and being on pause. While we in New Zealand have seemingly successfully navigated Levels 4 and 3 of our Covid Alert system; the sun rose each morning, yet so much of life was “on hold”. And now we have moved down through Level 2 and now after several weeks of Level 1 some sense of “normality” was happening before New Zealand had a “second waves” cluster/s appear in the last few weeks.
It’s all been a bit of a blur to be honest, I think for the first few weeks of “Lockdown” (both Level 3 and 4) I had been running on adrenaline to some extent, but eventually that ran out. The gusto with my “we’re in this together, we’ve got this” attitude kind of ran out of omph and I did the odd Zoom meeting and have been mostly just puttering around the house. Not having our cleaners at the time had taken a wee toll, and as much as I seemed to be doing and trying to keep on top of things, I’d been quite deliberate in making sure I have been taking time for things I enjoy like spending time in the garden.
I became quiet frustrated during lock down over some of my health issues. After 20 years, I was finally getting some decent testing and potentially more support and all of that ground to a halt. Now that lock down is over and the health system is more “back to business as usual” my appointments are starting again I am feeling more positive again.
I had a meet and greet with my physio with “baseline testing” at the hospital gym. As usual, my strength is good, its the co-ordination that is lacking. I’ve sorted membership at a exercise physiology clinic (small gym, supervised sessions, tailored programs), Ora Kinetics. Although the physios are great, unfortunately like much of our health system, they are underfunded so the equipment available at the hospital gym isn’t well suited to someone who needs more than a basic re-mobilization program.
Over the last few weeks I have also been fitted and received my Ankle Foot Orthotic (AFO) and my rehab plan has 3 days a week in a gym session (either at Ora Kinetics or the hospital) which also includes rehab homework. As it turns out wobbly walking for 20 years means my body has made some “adaptions”. Yes, these adaptions had me up and walking but it has also however meant that my dominant muscles are doing the jobs of all the stabilizers as well. This has meant starting at the base and the basics and working our way from there. I can wiggle my toes more than I could, and I am seeing some results in the short time we have been going (11 weeks). One of the new goals of my rehab plan is to “go a week without crutches”, which if you had suggested to me at the start of the year I would have laughed at you! I am stoked to say that I have met this goal!
The amazing thing with the AFO is after 20 years of walking with some form of mobility aid (I am still using ADNZ Raven, do not fear, she still has plenty to do) walking small hills and slowly venturing out without crutches or a stick is a both surreal and an amazing experience. I first saw this type of AFO (TurboMed Xtern) through a friend about 4 or 5 years ago. The standard AFO that go inside your shoe never appealed to me as they seemed to be more restrictive and unwieldy, let alone having to buy 2 sets of shoes every time I buy new shoes. The beauty about the TurboMed is that it is external to your shoe and has been designed to help lift the toes but still allow plantar-flexion. These AFO has also been rigorously tested by adventurous sorts and they are worn regularly by IronMan athletes, so hopefully it should be able to handle what I can throw at it.
Now some of my physio (maybe even my own physio is reading this) friends will be alarmed, “Antnz if you wear the AFO all the time you are going to undo the strengthening work you are doing!”. Yes, I am aware, this is going to be a delicate balancing act that is for sure. I really notice how much additional effort I put into walking when I take the AFO off. The energy saving and added stability is amazing but at the same time we want my muscles to develop as much as they can. This means doing things like not wearing my AFO (unless instructed) during gym sessions, not wearing the AFO on “relatively safe” surfaces unless I am already tired and as soon as I notice that my foot is dragging, then put it on or use it “off-road”. I did have a conversation with my physio as to what classified as “off-road”, although I will be leaving bush bashing for a bit later on. If I look slightly bewildered at the moment its is because I am often going “wow this is really happening” in my head.
ADNZ Raven has settled in well and truly now and the task training that has been done before she got here is falling into place and it is all coming together nicely. One of the things I need help with is moving things around the house for me, we started with a “pull’ on a rope, which is she got and understood, but you could really see the light go on for her when we attached the rope to the washing basket, while it had washing in it. It was almost like a realization moment for her, we had been working up to the actual task by teaching her to “test” the weight before she pulls, but when we attached the rope to a washing basket full of clothes to hand I saw the light-bulb go on, just before she grabbed the rope and ran away with the basket while I was trying to hang the washing.
Although I was pleased with Raven’s progress the “test” would soon come for us to complete our team training with Tracy Huff, Assistance Dogs NZ Trust; Client Services Instructor. Usually when a dog is placed team training happens right then and there. That is a lot of work over 10 – 14 days for a client to be confident in dog care, grooming, training and management, how to use the dog, how to handle the public and the myriad of other things that come along with using a Disability Assist Dog.
Now Raven must have known that Tracy was on her way, as Raven decided 2 nights before Tracy was to arrive to devour our leftover enchiladas! Just what I needed for our “Team Training” week, at least the “maintain animal health and can seek appropriate veterinary care” got ticked off the list early. Despite not feeling 100% Raven was a superstar! We easily knocked out the “out in public” type scenarios that are part of our assessments, things like: walking in malls, crossing roads, using elevators, down-stay, not gobbling up food scraps (or eating things in the butchery section), lying quietly out of the way in an eatery, not interacting with the public.
When Raven arrived we had been given a simple training jacket, which was fine during lock down however was not designed for me to be able to use effectively for some of the tasks I use a lot in public, such as momentum pull while walking and stairs or assisting me out of a chair or off the ground. Tracy had been thinking about this in the time between Raven’s drop off and Tracy’s arrival, she had bought a different harness and a grab handle. With Raven being slightly shorter than Ben the gear we needed was slightly different. Now that we have the right set-up Raven is quickly picking up on the momentum pull, although we do need some more time on stairs (I wonder if that counts as physio as well??) and chairs.
Raven had also been having trouble picking up my phone; when I upgraded to my current phone I got a “rugged” (hopefully Antnzproof) style phone which is a little more bulky thank a lot of phones on the market, however it is able to withstand dropping and is waterproof. A big shout-out to Bivoac Palmerston North for giving us a huge discount on a small Aquapac to hold my phone that I have been able to add a “grab tag” to, this gives Raven something to grasp rather than trying to pick up the whole phone.
It also turned out that Tracy had been at a B&B with one of the staff at the local court and she had offered to do some fundraising there, so we went for a meet and greet with some of the staff. A huge thank you to the Victim Advisor team for agreeing to donate a few dollars a week to Raven’s fundraising, it was awesome to see them again a couple of weeks ago, and a huge thank you for donations! The staff just adore Raven and giving her some time out of the harness to interact and have cuddles is something that people have appreciated to remember the good in the world and our community, which is something a little different from their day-to-day work within the court system.
There were a couple of things that I wanted to have Tracy around to help out with while she was here. As many of you know I get out and enjoy New Zealand as much as I can and at times that can mean getting a little creative with getting out and about. ADNZ Ben did NOT like stiles; in the many attempts I made, he would out right refuse them. This would mean having to find a gate, a gap in a fence and once we had to go under a small break in the fence by a river. I was also aware that some dogs will refuse swing brides. Well ADNZ Raven definitely has the adventure dog spirit and happily went over a stile (I will be finding different ones to practice on) and I actually think she enjoys the swing bridge because she heads straight to it at that park now!
If you would like to contribute to ADNZ Raven’s fundraiser please head (and share) to: https://give.everydayhero.com/nz/assistance-dogs-nz-ben-has-retired-please-support-his-succes
Now with all of this going on I have had to have a think about my capacity. Yes, I sound like a bureaucrat right now….. sigh….. ah well….. Basically I realized into week 3 of my rehab plan that there was no way that I was going to be able to put 100% into rehab and be able to give my best to all the Enabling Good Lives work, while still trying to do things like write for the blog (Yes, I know I haven’t been great at this!) regularly, edit pictures, spend time in the garden, sleep, eat etc etc etc. Something had to give, some would say I don’t need sleep, however anyone that has seen me after a few bad nights sleep will know I NEED my sleep!
Unfortunately I had to make a decision and I have stepped down from my role as the Mid-Central connection to the National Enabling Good Lives Leadership Group. It was a hard decision because I honestly believe that EGL has the potential to bring life changing policy into the “disability” space. I just had to prioritize my rehabilitation so I can make the most use of what I have in the future. I am retaining my role as a Disabled People’s representative on the Mid-Central Leadership Group for Enabling Good Lives. I am not leaving the whanau, just taking a sidestep for awhile.
This is the year that Mana Whaikaha (operational brand) needs to become a stand alone entity, to ensure that people accessing supports through the prototype do not lose any of their supports should things revert to “prior prototype”. This work is going to take a lot of effort from those of us on the ground in Mid-Central to be realized. I want to see all disabled New Zealanders, regardless of “causality” or “functional ability” get the supports they need to live full lives and thrive, not just survive. I totally understand the need for accountability of “tax payers money” but when we consider the cost/benefit for the sector as a whole; if more “high functioning” people had supports there would be more flow on benefits to society, both from taxes and well-being outcome perspectives that could outweigh the “costs” of caring for those with “high and complex needs” (not my terminology). I just want to see people make the absolute most of their lives. Sure life is not easy, but there is just so much unrealized and underutilized potential in the community that could add so much benefit to society.
So with all of that said, hopefully now I have freed up some time for myself, the trick is going to be not filling up my diary completely!! I’ll be making sure I take time to enjoy life and my favorite things. So as usual whanua, take care of yourself and others, stay safe and continue to strive to thrive, not survive!
Tihei Mauri Ora,