Lived Experience Forum

[Daddymac]

Daddymac age 46 live in NSW father to 3 children oldest 23 a 12 year old 9 year old.

I was diagnosed at 43 years with Chronic traumatic encephalopathy (CTE) is a brain condition linked with brain trauma. in 1996 I was riding a push bike the front wheel had come away from the bike, I went over the Handlebar my head meeting the road 4 days in a coma 9 screws 2 plates each eye socket. A few weeks in hospital dealing w this event at 19 I got out hospital 3 weeks later  I travel to South Australia spent few months there in recovery before riding a motor bike no injuries 2 years later I was playing Aussie rules a game I played since I was 11 years of age prior to my injury I was also playing Aussie rules had few concussions didn't think of it at the time. I eventually hung my boots up 13 years ago, my focus was more being a family man working full-time and being a volunteer fire-fighter 10 years of service now retired. 

So prior to my diagnosis I knew had brain injury I was functioning had a full-time job as a social worker for 24 years in 2022 I was medically retired from a job I loved and passionate about. I am now stay home father w support from NDIS and living on centrelink my partner is my carer.

My goals each day is be up before my youngest goes to school engage with 12 year old whom is home schooled be in the present.

[tyme]

Hey there @Daddymac ,

Welcome to the forums! My oh my it sounds like you've really had your fair share of life. I hear how so many events have led you to be where you are today.

Good on you for reaching out! 

I hope you will find the support you are looking for on the forums. I'm sorry that you are living with early onset dementia. I'm hearing that it is so hard. I'm glad you have made the decision to focus on yourself and your family.

What do you do in your free time?

[Daddymac]

My free time no ne has asked that before. I guess watching video on Facebook interacting w my children, I sleep alot when I have nothing planned my support workers ensure that I engage in activities. so today for example home school was playing monopoly it helps w reading maths basic life skills 

[LilMapleLeaf]

Hi @Daddymac ,

Thank you for sharing your story. Your post title was early onset dementia however it wasn't mentioned in your post, is this something you are also dealing with? I had a friend who also had early onset dementia and found lots of different supports that where really helpful. He also became an advocate for dementia Australia. I'd love to share some of these supports and resources with you if this is something you are struggling with.

[McFluffy]

G'day.

I'm new so forgive me if the interactions are clumsy.

It is very interesting to hear your experiences.  What I read in the words was pride in yourself, being proud of your family, personal achievements and exciting goals to share memories with your family tribe.

Our past experiences are different, yet we have some similarities regarding brain changes and we're both approximately the same age.  Again different, but share some different condition symptoms.  

It does sound like you've got wonderful people in your life.  Being surrounded by good people is a reflection, like looking into a mirror. Congratulations.

This is probably something you'd already accessed.  Dementia Australia has some excellent advice options and access to practical solutions to challenges.  Some of the small things like jar openers have been liberating for me.  Not sure if you're a novel reader, a nice thing brought to my attention was the use of books from Google Books or E novels from the library, then reading them on my iPad type thing.  I was finding I continually kept rereading the same stuff and getting frustrated.  The pad remembered where in the novel i was. It also allows me to increase the font size so I can read and remember.  It also allows me to write some notes on the last page to help me progress through the book. This works for me... there maybe be better things for your challenges.  They do sometimes have access to financial supports or financial management services, that might be helpful for you and the tribe.

Wishing you success with your immediate goals and success for the big goals of memories with the tribe.

Ps.  I hope this reads okay,,it took me about 8 times to edit so it made sense to me. @Daddymac 

[Daddymac]

@McFluffy I appreciate your kind words the journey of dementia, I have been in contact w dementia Australia they have given me some tools how to recognise change.
I find myself becomming frustrated an angry at the world where I just want to be left alone. I spent all of today in bed I had my youngest child wanting to play I just couldn't do it.
I'm hoping tomorrow is better

[McFluffy]

@Daddymac probably not the exact solution, but I think Dementia Australia has a holiday camp for kids to give them some constructive play and you a little time out. I don't have kids, so can't really offer experiences on that.  However, DA did have some experiences with kids and help.  I think they even have "play carer" type house call.  Being exhausted is very reasonable and valid.  If the exhausted and pain stuff is getting to be challenging, is there a computer game that the kids like and you can play too?  Just a brain fart.  I hope tomorrow is different.

[McFluffy]

@Daddymac Hope today was better.  If it's ever any help, I do like to joke about some of the brain stuff.  Mine is left temporal, front and lightening storms across the entire nugget.  So things can go silly from time to time.  I tend to park the personal stuff and just make light of the brain and responses.  For me making light help things seem a little easier.  Anyway...   Really do wish today was better.

[Daddymac]

@McFluffy today was another struggle just to get motivated is a big task.
The latest diagnosis from geriatrician is also frontal lobe mostly behaviour cognative thinking empthathy the lack of.
3 months time I have a other cognitive assessment go from there.

[McFluffy]

@Daddymacsorry today was a crap fest.  I really do hear you about motivation and emotional and personality changes.

I just had crap crapity crap moment.  Write a thing, and then forgot what to do and it disappears.

I hope your geriatrician is a nice and patient person.  The cognitive tests can hurt emotionally.  I always go for cake afterwards.

Got my neurologist coming up soon, but genie for not close.

Hear you about motivation and personality changes.  I get scared what I will do.

Hasn't happened for a while. But one night I woke up early and started looking for our cat.  We've never had a cat.  Couldn't find the cat at house, so left in my undies.  The police found me sitting in the park, in the dark and rain looking for a cat we've never owned.  It was a new walk of shame being escorted home in the police car at 3 in the morning in my grundies.

Avoid had to write this again because lost the first one.

I know today has been a big bag of crap.  Hope tomorrow is a little better.  And wishing you no hunting for stray cats.