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


KVK said...

Amanda thank you for your courage. May this treatment be quickly available for those who seek it in Australia. Best wishes for your journey.

Amanda said...

Thank you Lexi for sharing my story!!! Amanda xx