Tag: treatment

Medical Cannabis

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When you depend on strong nerve and muscle relaxant medications to continue to live as comfortable as you can be, you constantly ask yourself “how did I become like this?”

Up until I was about 26, after four years of excruciating pain from an incident which caused nerve damage, soft tissue damage and a lower back injury I was referred to a lovely neurosurgeon who specialises in people with chronic pain, many with physical disabilities.

I’m still under his care and whenever we see him he says “Jacqueline, what am I going to do with you?” Haha. Like within most aspects of my life concerning my disability and now health, I’m constantly told I’m “one-of a-kind!” Yay for me! But there’s gotta be someone out there with Cerebral Palsy, with severe scoliosis and luque rods…plus nerve damage which causes chronic nerve pain 24/7. Right? I’ve googled and searched. Unlike myself who’s extremely lucky to have communication, there’s not many with this luxury.

Back to the medications, most days I can’t wait to be showered, dressed and get my hair dried, just so I can have breakfast so I can take my meds, so I can bare the pain. On my really bad days I can’t even stomach eating breaky because my stomach’s churning from the pain.

There’s been lots of debating about legalising medical cannabis. Unfortunately like Gay Marriage, Australia’s very slow at accepting cannabis (a herb!) as a medicine; a much needed medicine to ease a whole list of illnesses and diseases.

To me, something that reduces seizures in CHILDREN is a no-brainer! Something that may help cancer patients with pain management and helps them to feel like eating again SHOULD be available freely. Something that reduces pain, spasming and minimises the need for prescribed medications for people with chronic pain and/or disabilities should be available now. Instead the Federal Government are dragging their heels and it seems like their interest in this manner could be about financial gain.

Thank God for Daniel Andrews, the Victorian state minister who started the ball rolling earlier this year when he stopped loving parents who are giving their suffering children cannabis oil from being charged. This oil is completely safe and greatly improves their kiddies’ lives. I know parents who would do anything to see their child pain-free and/or to reduce their elliptic fits. I’m far from being a child (I’m 40 in October), but I know somedays Mum wishes she could help me control my pain better.

Last night we watched the awesome documentary on SBS called “The Truth About Medical Marijuana” where it showed how in Israel people with illnesses and chronic pain are prescribed individual doses for their specific needs. Their system works! Peoples’ illnesses and chronic pain are eased. Cancer patients’ nausea dissipate so they can eat! And the “Professor” of medical cannabis treatment has been doing this for twenty years! TWENTY YEARS!

So I really hope by writing this post Australia legalises medical cannabis ASAP! My medications have cost me having a colostomy and a constant foggy brain. More to the point, I don’t wanna think “this is it? I can’t pursue my dreams due to my pain?”

 

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An Occupational Therapist’s Unique Story

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I met Sarah Solomon through a recent session to set up Eric Toddler (a Microsoft Surface Pro 4 connected to my Intelligaze Eyegaze camera (with Grid3, which I don’t love at the moment). Anyway, Sarah and I get along very well and have been chatting on Facebook about things.

Yesterday Sarah shared with me a blog post that was published on the MND site, that other therapists, disability workers and families should read.

Sarah’s Story

Just Because….

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Just because I have a severe disability

Doesn’t mean you have to speak loudly and slowly,

I comprehend everything you say.

Just because I have a severe disability

Doesn’t mean I’m unable to communicate with you,

Simply look at my computer screen; you’ll see what I’m saying.

Just because I have a severe disability

Doesn’t mean what I do in my life should be seen as spectacular and extraordinary,

I’m just doing what other people do.

Just because I have a severe disability

Doesn’t mean I should be treated like I’m isolated,

I lead a full life with cherished relationships and wonderful adventures.
Just because I have a severe disability

Doesn’t mean I don’t have the same thoughts, feelings and aspirations as you do,

I think, feel and aspire like you do.

Just because I have a severe disability

Doesn’t mean you can treat me like a child,

I’m an adult who makes her own decisions.

Just because I have a severe disability

Doesn’t mean you should assume anything about me,

My exterior fools most people.

Why I’ve started Through My Eyes

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When I begun this little blog, I was 41 and just had a bad experience with a disability worker. I have had lots of experience with human interactions due to being a chatterbox (even through I’m non-verbal – I communicate and write with an eyegaze system), so I’ve had ome awesome, some not so awesome…some downright cringe-worthy experiences!

What’s different about me you might ask? To many I’m just a woman with the same feelings and emotions as you. These people see me as a person. Others immediately see my severe physical disability; how my arms tense up, how I rarely dribble due to lack of muscle tone and the big one – how I’m non-verbal! I communicate through eyegaze systems; I have one for my trusty Windows 7 computer ie Senior Eric and a portable system Baby Eric which is a Surface Pro tablet for when I’m out ‘n about. (Hopefully this year I’m upgrading to a Surface Pro 4, getting rid of Microsoft’s not so finest platform Windows 8). Anyway, you get the gist; I love to talk even though my own voice doesn’t work, thanks to my brain sending out muddled messages to my muscles.

I live at home with my beautiful Mum and our gorgeous furbabies Shadey, Frankie and my girl Roxy. My Mum is my main carer, advocate and my world. We’ve been through it all; mainstream schools, fighting Board Of Studies so they allowed me to complete an exam over days (at that stage I used a headswitch to type which was awfully slow and tiring), fought to get into uni doing a dual degree (I lasted six months due to not nice lecturers), finally I ended full-time at Tafe with Mum’s support and encouragement. Mum’s my rock, she’s always understanding. I have chronic pain issues which seem to get worse as years pass by, but Mum always understands and even with her mising out on things I never forget what she’s sacrificed (she always assures me she loves being my Mum and wouldn’t ever desert any of her four children). But then, in other areas we certainly make up for this. We love going to concerts, especially Day On The Green gigs! We have some stories about our concert adventures and holidays! I love my Mum, I have no doubt that this is the reason why “Mum” was my first word I verbalised when I was around three years-old, and still is the word I can easily say.

For showers and to get out ‘n about, I have two carers. Currently my main workers are on well-deserved holidays, so for my shower shifts we’re getting fill-in workers. This was the main reason why I’ve started this blog.

Mum always explains to a new worker (because I’m in bed still) that my disability is only physical, “mentally Jacqui’s as bright or even brighter than you and I!”. Some people “get” it, but unfortunately some don’t. Several times now I’ve had a worker who doesn’t “get” it, she talks to me in that high pitch sing-song voice, but speaks to Mum normally. There’s a way to wash my hair without “drowning” me, but this lady’s common sense doesn’t kick in. Whereas this morning I had a lovely worker (who I’ve had long ago) and she did everything with common sense and listening to me by watching my eyes. Most importantly she showed me dignity and made sure she covered my body with a towel when she was drying me. This was bliss! And because I got a little bit sunburnt last week, I pointed to my moisturiser. She put it on my body. Unfortunately other workers haven’t picked up (or just ignored) my eye cues. This morning’s carer joked about not drowning me and said how she’s told off other workers who’s done so to other clients.

I understand most people haven’t come across someone who’s severely physically disabled and non-verbal who’s not intellectual disabled, but in the year of 2017 agencies should educate their staff to at least uphold everyone’s right to dignity.

So if you have a physical disability, I encourage you to write your stories about workers (the great, awful and ugly). Maybe share this blog on your agencies’ page or e-mail them. Your voice is important!

Thanks for reading!
Jacqui