Rems Quality of Life

6.9.2022 note: goal raised due to declining condition and need for inpatient rehab.

My name is Remi and I have Functional Neurological Disorder (basically my nervous system doesnt work properly and sends the wrong signals to my body). I need help to buy mobility aids so I can get out of hospital, be able to leave my house, and engage with life

Here is a bit about my situation:

I've had FND for 2 years but only got diagnosed in January 2022.

I developed FND from 2 traumatic events in 2019 and 2020, but it has gotten a lot worse in the last 3 months after I had an appendicitis, moved house, and had COVID.

I do not have access to workplace injury coverage to buy the aids I need and they currently will not pay for my specialist appointments. I am not currently eligible for the NDIS, either.

I see an exercise physiologist weekly and even progressed to the point of being able to throw axes at Lumber Punks for my sport. It's one of my happy places.

On the 19th of July 2022 I was hospitalised having a severe FND flare which turned out to be the result of a minor infection and spent 3 nights in hospital unable to walk.

On the 26th of July 2022 I experienced another severe flare, worse than the one the week before, and have been in hospital since.

Symptoms that debilitate me include:

• Muscle spasms, tremors, involuntary movements, and "locking" of my muscles.

• Severe pain throughout my body, but especially my legs, lower back, neck and jaw.

•Muscle weakness through out my body but especially my arms and legs.

• Speech loss, inability to chew, difficulty swallowing, stammered speech.

• Mobility - paralysis of my legs, arms and neck and muscle weakness making me unable to walk or stand for long.

• Memory - forgetting what I'm doing while I'm doing it, not being able to follow conversations, not being able to hold conversations.

Over the past 2 weeks from 3 severe flares, I have become hypoglycaemic, severely dehydrated, injured my neck and feet, had falls, and choked needing suction to clear my airway.

To get the tremors and pain under control I've needed very strong pain relief and muscle relaxants.

I am in a bad place. My mum has covered some appointments over the past 6 months as I've used up my savings on medical expenses.

We are asking for donations to fund:

• A wheelchair that has cushion for pain purposes.

• A wheelie walker for when I can get around smaller distances.

• Coverage for specialist appointments I need ongoing including Neurology ($420 per appointment), Pain Specialist ($360 per appointment), and medications I can't get covered by workplace injury insurance which are approximately $480 per script approximately every 6 weeks, increase in exercise physio to twice a week as per specialist recommendation ($64 per session I have used up all my health insurance), and treatment in a private hospital which has been between $150 - $250 per admission (two were $305 each), and I've been there 5 times in 6 months for acute emergency care.

I'm very lucky to have the support I do from my family, especially my mum, my partner, and friends. My quality of life would be a lot lower without them. But at this point, we really need help covering the medical necessities I now require.

Thank you.