Showing posts with label community. Show all posts
Showing posts with label community. Show all posts

Tuesday, 16 June 2015

A little while ago...


The Hen Men from meerkatfilms on Vimeo.


I was driving to work, it was rainy and cold and the bleakest of bleak days. 

It was an ordinary day - until I spotted an elderly man, leaning hard on a sign post, waving. I thought his car must have broken down, so I slowed right down, drove on, and then continued thinking about him. I quickly did a block, came back, pressed my hazard lights on and pulled over to him. Winding down the window my mind was racing:

Who was this man? 
Why did he have dirt on his back? Leaves? 
Where was he heading?
And why had no one else stopped?

In the moments it took me to decide to drive back to him, I had thought - if this was my grandfather, or my father, I would hope someone would pull over and help. 

I called out and we had a conversation - from which I determined that maybe he had dementia. 

My beautiful grandmother had lived with dementia. I was familiar with what dementia does to the mind and the behaviour of those with dementia. 

I asked him if he had any money - to which he told me he had fifty cents. He wanted me to take him to the other side of the city to visit a friend, of whose address he couldn't recall. 

All the time, my mind was travelling so many different ways, and I didn't know the best way to look after this man. If I picked him up, I wouldn't know what would happen. I didn't know his history, he wasn't hostile, but I didn't know anything about him. I gave him my umbrella, told him I wasn't able to give him a lift - and then hooted up to the local nursing home, pulled up, ran in and breathlessly asked if they were missing a man.

They were, and so I drove two staff down the long road, searching for that man.

I knew what he was wearing, knew his stature, knew his accent - but in the very short time it had taken me to get back - he was gone. 

I then decided we would go and search the local train station. 

Thankfully, he was there. Mercifully. Happily. Amazingly. 

He gave me a huge hug (I was worried he was going to be mad I had thwarted his getaway), and then we parted ways. 

I was happy to be able to take him back to a safe place - I had had thoughts of him walking away into the city, by himself with just fifty cents, and no recollection of where he was going or where he was from. 

Which brought me back to The Hen Men. 

Nursing homes are hard places - for everyone. Isn't this a beautiful and simple way to add meaning and value to someone in a possibly dark and lonely place? 

Tuesday, 3 June 2014

What You Can Do To Help 33 Year Old Amanda Jane


She's my age, she's a busy mum with a three year old child, she lives in Melbourne. And she's fighting MS. 

Meet Amanda Jane. She's flying to Russia for breakthrough stem cell transplantation. But she needs your help. 

She's hoping to raise up to $90,000 to assist with the treatment ($45k), accommodation and flights, as well as recovery time. I don't know (m)any 33 year olds with a spare $90k. So if you can support her in some small way, it will be a huge help. 

I chatted with Amanda to find out how Multiple Sclerosis has affected her, and what we can do to help. 

Amanda, two years ago at the age of 31 you were diagnosed with MS, what were your symptoms?

It took me over 12 months to finally get diagnosed. It felt like the longest 12 months of my life, 12 months full of fear and questions.

When I look back I can see I have had MS symptoms up to 5 years  - such as electrical shock feelings down my spine when I looked down and 'hot spots' on limbs for months (I now know the feeling down my spine is one of the most clear MS signals) was when I had tingling start in my feet, it slowly spread so that I had dead leg type pins and needles from the soles of my feet all the way up to my chest. I had pain and numbness in patches too. I had that for 7 months straight. It was terrible.

When my Neurologist saw my MRI he was shocked that I was standing next to him and wasn't paralysed, that was such a scary thing to hear. I was in shock and my only response was "I have a baby, I can't stop, she won't understand why I can't pick her up, I have to keep going, there was no other option".

After a strong course of steroids those feelings finally started to go away but then instead I started getting a constantly painful right eye and strange vision (optical neuritis), this was for a few weeks.

Next I was getting constant 24/7 severe headaches and migraines - it took 8 months to find a medication (that I take daily) that works to reduce them.

It was one thing after another for a straight 18 months.

What's a normal day like for you now?

At the moment, thankfully, not so bad. I have Remitting Relapsing Multiple Sclerosis (RRMS).This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. In time it is most likely that I will transition to Secondary-Progressive MS (SPMS) where symptoms worsen more steadily over time. 

Currently I feel the best I have in the last two years. In the last 12 months alone I have had six MRI's, many, many blood tests, been on three rounds of strong steroids and countless different types of pain medications to try to control my headaches/migraines.

At the moment I am dealing with is aches and pains in my joints which is one of the side effects of a new drug I am on to try to slow progression of my MS. Last Friday I started on a drug that will mean once a month I go to hospital for a few hours for an infusion of medication.

I take daily medication for my headaches and that is working well at the moment, I only have a dull headache most days and on bad days it still isn't as bad as it was before this medication.

I have fatigue which makes me feel like I am the laziest person on earth as I never have energy to do much yet I can't sleep as I have fatigue so I am forever bone tired.

I have gone from being a person who wouldn't even take panadol for a headache to one that gets up and takes at least 5 tablets every morning and drinks magnesium citrate in a drink every night to help with sleep and nerve pain.

This is a good day, I don't even want to think about my bad days.

I can still walk unaided, I can still drive, I can still chase around my daughter....I just don't know for how long until I have a relapse that means I might not be able to do that.

For people that don't know much about MS - can you tell us how it affects you every day?

Every day I need to think about taking my medication so I don't end up with a bad migraine.

My concentration and memory is pathetic. My sister in law would testify to how bad it is, I cannot recall a conversation we had earlier in the day let alone any other day.

I get confused easily and take longer to do things than I ever used to. I am very disorganised and that annoys me as I used to be organised.

I know it is effecting my brain on a daily basis.

On days where my body is effected I even need to consider how close I park my car to the shops as I get tired walking too far. An hour at the shopping centre the other day meant I had to have a lay down when I got home.

When I had optical neuritis I couldn't see my computer properly at work and had to close all the blinds so I didn't get too distracted by how much the daylight was distracting and making it even harder to read.

At my worst I had to concentrate and think about every single step I took because I couldn't feel my feet and it was too easy to trip and fall. Throughout this time I barely told anyone so I was carrying on like nothing was wrong, that is really difficult when you can't feel most of your body.

I constantly have MS in the back of my mind, all day, every day. I am always worrying about when and what my next relapse with be and whether my daughter will one day be looking after me.

You've got a small child, it must be tough parenting while dealing with MS, how are you coping?

It is hard. At my worst it was like I was on auto-pilot. I was in pain, constant pain, yet I just kept on going. I had no other option. My husband didn't know how to deal because he couldn't 'fix' me so we just kept going on as normal.

My daughter can’t understand why I can't lift her some days - my right side of my body is much weaker than my left, so I lift her even though it hurts like hell to keep her up. I still do the housework, go to work and go to play dates etc but it is super hard some days.

In the beginning of all this I felt so alone because I looked totally fine yet on the inside my body was attacking itself.

I think it was actually good that my daughter was born when it all started because otherwise I wouldn't have had a reason to keep pushing myself on. I would have just wanted to stay in bed all day.

Soon you're flying to Russia to receive the ground-breaking stem cell treatment, what will this do?

Hopefully it will totally halt my MS. It has no promise to reverse any current damage but it could, if I am lucky, but that is why I want to go now. If I could halt it now and only deal with the issues I have now I would be over the moon.

I don't want to wait five years when I might have a more permanent disability that I would then be stuck with for the rest of my life. If I can halt my MS before that then I would be one lucky chick.

To imagine being able to go back to a life where MS getting worse wasn't a thought in my head every day would be amazing!

What can people do to help you?

They can donate to help me get to Russia, donate their time to help at our events, or to source donations or donate goods or services for us to auction off at our trivia night to raise funds. Any help is greatly appreciated!

Anything else you want to share?

Just that I hope this treatment one day is openly available to any MS sufferers in Australia. If I could pay the same amount as I have to pay to go to Russia for treatment yet have it here, I would, but that isn't an option.

I also really want to thank everyone that is supporting me and showing interest in my journey. It is totally heart-warming to see that people want to help make my dream and the dream of my family, a reality.


Visit Amanda's website to read more - To Russia - Fighting MS
Donate here

Wednesday, 29 February 2012

The Walkers

Each morning they embark on their own routines. In half-darkness they walk, sometimes together, usually on their own, lapping one another, stretching. Sweating.


There's one guy that is easily identified by his voracious appetite for red t-shirts. Each morning he walks - he's wearing a red t-shirt. Except for this week he's switched to blue. He runs one lap, then sets himself up in the cricket nets. Stretching. Pushing. Pulling. After a while he exits, runs a couple of extra laps, and heads off for the day.

Then there's Peter. Lovely white-haired Peter. He must be at least 80, he walks, we lap one another, we wave hello, we chat on every second lap. He stretches using the fence. He must have lived here forever. He's heading off for four months overseas. 

A woman - whose age is difficult to determine turns up. Her ponytail swishes side to side as she runs, effortlessly around and around the oval. She stretches with another woman (who is older and curvier), they chat as they run, under the gum trees, around to the side where the sand flicks up into your sneakers.  

Frank is there most mornings. He's a jovial man. We chat politics, war and walking.

Occasionally there are other walkers, but for the most part, it's the usual suspects. Occasionally an elderly woman will brave the slightly sodden grass, walk a few laps, but then she's out of there. Sometimes one of these women will wear a visor, or those sunglasses that flip up and down.

Some mornings see the beginnings of the sunrise. The most spectacular of which featured pale pink and lilac. Streaks of colour like a melted ice-cream. But the next day, markedly less memorable, golden clouds wafting in the sky. Yet it held on to its own beauty, though simplified from the previous.

Most mornings I walk to the dulcet tones of Ira Glass from This American Life. Perfectly timed, and I can get lost for an hour, listening to someone talk about someone else. Sometimes I carve things up and set my iPod to shuffle. Although it's risky with a mix of Playschool mixed with Rihanna mixed with Justine Clarke.

Without even thinking about it, I've become part of the community. Sometimes a silent community, or sometimes a community where a wave or a 'Good Morning' is enough to pass muster. It's comforting to share other people's lives daily. It's a really new sense of perspective, and one that I like.


image via Semantically Driven


Tell me - how does this happen??