Where Do I Start? A Diagnosis of Myositis and So Much Is Happening …. But I Will Try An Update!

Hi Everyone,

Since I last posted, our lives have been turned upside down.

I think the best way to bring you the simplest update is to list the events, and then I’ll chat about key issues. Here goes…..

Let’s start with good news:

Peter had his ACAT assessment last week for 7⁷⁷Level 4 Aged Care package high priority. This is an Australian government support package for people over 65 who require require help as simple as gardening through to carers at home and palliative care, etc. The highest package is Level 4, and Peter has been allocated this level of package due to his Alzhiemers and his disability needs… including my situation.

I literally just got a letter to say it’s been approved and funds allocated! To get the funds allocated six days after approval is unheard of. There is usually another three months’ wait. It’s an amazing blessing but also flags the extent of our situation and urgent additional care needs.

I am so grateful for this and for my own 24/7 carers through NDIS,which is  the  government under 65 disability funding programme.

Not So Great News

I’ve just been diagnosed with Myositis… It’s a rare autoimmune disease causing complete muscle wastage  throughout the body. It makes so much sense and explains my quick disability progression. No cure, but steroids’ treatment and possibly infusions can help manage some symptoms.

Here’s the link to Myositis Australia if you would like to know more:

Myositis Australia

Myositis is sometimes misdiagnosed as motor neurone disease (MND). While it shares many of the severe impacts of MND, it has a relatively low public profile. That’s why we are dedicated to raising awareness about Myositis to help people get diagnosed earlier.

Myositis Australia

My current specialists are going to find other specialists in this field for my medical team to help manage my Myositis as best they can, along with my bone disease, Diabetes and other issues to at least make me as comfortable as possible.

It appears I am unfortunately in the end stages of this disease given the severity of my disability and the speed of its progression. This shortens life considerably.

This last diagnosis indicates my body really is failing, and saying enough is enough.

Peter and I would really appreciate your prayers as we navigate this next stage of our lives.

Thank you so much for all your love, prayers, and support. It means so much.

Take care

Sam xx