Hi Everyone,
I have some wonderful news after what has been a very difficult week.
It started with Peter being taken to hospital two days after being officially diagnosed by his new Neurologist with a rare dementia .
Thankfully, the hospital adventure was a “best case scenario ” outcome requiring investigation of severe neck and head pain and a three day stay. The treatment is pain management. To have his pain levels brought under control with the right medication has really helped him, so in the end, the hospital stay was really worth it.
It’s A Rare Form
The rare form of Peter’s dementia is sadly taking his speech from him as it is affecting that part of his brain plus he also has Alzhiemers Disease which is causing short term memory loss, cognitive issues, delusions, verbal aggression/mood swings etc.
His frontal lobe area of his brain is the damaged area and significantly damaged in Peter’s case.
He is progressing so fast I can hardly believe this is really happening….but sadly it is and I have to admit I am struggling to cope with my own incredible pain, my lymphatic breakdown and overall disease progressilon.
The roller-coaster ride of daily living and caring for Peter is full-on. For those of you who know me well, you will not be surprised to read. I am determined to look after him at home with the help of carers for both of us. It’s where he wants to be, and it’s where I want him to be.
I’ve been blessed with the most amazing support from carers, neighbours, friends who live close by, online friends through my FB forum Medical Musings with Friends and emotional and loving support from our family living interstate and overseas, including some beautiful and unexpected visits from some of our interstate family!
The Neurologist Appointment
When we visited the Neurologist last week I decided to not say anything upfront and let Peter chat to the Dr in his own words. I didn’t want to colour the Drs thoughts in any way. I wanted to make sure we definitely got the right diagnosis.
Within two minutes, the Dr turned to talk to me. It was clear we had a diagnosis backed by the clear brain damage seen on the MRI.
It was also clear I definitely need an electric wheelchair to be independently mobile, especially if I need to get out of the house for safety or respite reasons. At the moment, I’m 100% reliant on Peter to get me outside.
The Perfect Wheelchair For My Needs
So long story short there is a new extra light folding electric wheelchair on the market that looked perfect for my needs, is suitable inside and out and half the price of turning my existing manual chair into an electric chair.
My Occupational therapist managed to source one for me to trial this week and it is perfect.
Thanks to generous donations and without a doubt answered prayers I have managed to secure a brand new one on the FB Disability Marketplace for $3000 which is $2000 less than the RRP.
The lady selling it was the carer for her mother who was in her 80s and had parkinsons and Alzheimers disease. The chair had been ordered to help make it easier to transport her. Sadly she passed away three days before it arrived.
I am so incredibly grateful and feel so blessed to have this very special chair.
I’m so grateful I got to trial it before buying it.
Hopefully I’ll have it by the end of the week. I’m so excited.
We have an incredibly long and unknown journey ahead of us. We are both so exhausted but thankful for the support from carers, registered nurses and our medical teams.
Mostly, I’m grateful for each of you.
Thank you, thank you so much.
Love and blessings, Sam xx
Sam’s Snippets
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