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Living w early on set dementia

Living w early on set dementia

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.

45 replies

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In response to: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac

Moo.

I'm genuinely friggin happy today was better. Your writing, is better today too. There is clear tone of pride. You're better day today made my day better too, I know we have never met, but I am really thrilled.

Friggin Meow...

I had a good day today too. Went to town by myself, and a coffee at the cafe bimyself. Got home gym selfish. Someone yelled at me today, and I didn't f n care. When the filter is f d reacting is super easy.

I did some drawing. I am an artist by trade. It's hard, but I do keep it going.

I won't ask those questions tomorrow because you've answered them tonight. However, if possible, would you let me know sometimes?

If I piss you off or it's not good type talking, you're welcome to tell me to bugger off.

Thank you for saying you'll ask on Thursday. I won't go into details, not ready to share this stuff and probably never will be. But just someone asking is helpful.

Hoping tomorrow is a good day for both two tomorrow. Please give yourself some slack tomorrow. It's okay to be not okay. It's friggin fabulous to be better than it could have been.

Good night meow... I hate cats!

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@McFluffy I'm happy that you had a awesome day

Night chat tomorrow

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac

Moo.

Just realised you photo is a tiger. Don't hat tigers but house cats. Creepy things.

Hope today is a better one.

Please tell me something that you did different today? Please give slack today you.

Had a horrible night. Night terrors and only give 3 hours sleep. No sleep caused seizures bit chunk of tounge and smashed face. Broke a finger. Glad Ian and dog herel. Gonna spend day in front of tv on couch sleeping.nn. battery flat. Had good cry it is okay know tomorrow or next will be better. Don't like terrors and panics. But better soon.just not today.

Play uno hug your kids today. Hope you do something different today. Be good to you.

Bye

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@McFluffy night terrors are scary as anything I have them one time or another none that cause seizure. My day so far support worker Cleaned my room now heading to beach for a swim w my son and support worker.
Been meaning to ask how much support you get from NDIS tell me to but out just a query yeah curiosity killed the cat. Just w your health you have so much going on.
Have a good day chillaxing I'll chat to you soon

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac

Moo.

Very happy with myself at this momment. Was stuck in thinging about night stuff, so told Ian I needed a distraction and to take me out for breakfast, We did, it workes for me today. Just very tired now and probably will not read your message tonight until tomorrow... sorry

Hope you do something different today and give yourself some slack. Please tell me about it. Give your wife a hug 2.

Thank you for asking about me. I have a long time to get my shit in place so there is stff happenign but Iam much lucker and better than most people. I am amazed at how you have been dealing witha shit load in a small space of time. It does seem like you have been able to give your kids and wife good memmories of now. This is important and you really should recognise that this is a brilliant gift you are continuing to give.

NDIS has been good for me. Most times, just slow. Have some one come in not every week but every 2 or 3. They let me push myself, also I am physically fit, just overwheight and the cabbage is not good. Because had a very long time to adapt I have been able to put stuff in place. I am lucky we can afford stuff. Never gonna go hungry, always have a roof and good family and freinds. Much better sitting then most people. Also lucky my brain works best in the morning so can get things done easily in the morning, less in the after dinner.

The biggest thing for me NDIS helped get as assistance dog trained to stay when seizures happen, it knwos when I'm acting strange so will take me to somewhere safe or another person. After the brain storms it is there so I don't panic. If I do start to panic and on the floor it will sit on me like a heavy blanket, which calms me down. NDIS helped with some things like lid openers under the kitchen cupboards. It helped me get a cargo tricycle that I can carry my staffy in a box at the front. The tricycle is the best bit of kit ever or me other than the dog. They trike gived me fredom and exersize. I can ride into town and do tings for me, I can spoil me, I can be selfish and I don;t care it doesn't hurt anyone else.

MDIS helped get a seizure alarm that detects shake n bakes then sends a phone warning to people with a gps. Helped me get some blue tooth tracker coins for all my shoes, so if i wander people can find my by their phone and will give a warning to other people if I go out or a yard or into the farm next door or neer water.

We have stairs, have fallen down and broke arm and some bit of the back (not bad, but enough to be scary), so helping put ina lift.

The big fight I am having at the momment is the dog is old and needs to retire. He needs a life 2 having worked and been on guard for every day. Because I am not an armed forced vet eran i amway down the list which annoys me off because being selfish my needsare more. Also they cost about $40k to about $60k and take 2 years to be trained with me. So really annoyed off it is a long time wiat then train and to be at risk while a veteran is less at risk (just being selfish).

NDIS heple d with little things like timers for outdoor hoses, so if i forget the back yard doesn;t flood. They didn't help pay for, but recommended in induction cook top oven so that if I forget something it doesn't keep burnign like a gas or elements cooker. It turns it self off by itself. They helped change the house haylogene lights to led so they don't burn if I forget to turn them off and go away form the house. Lost of little things that have been good. I don't need to worry; worrying is not a freind.

NDIS helps pay for the buss to appointments in town. the local council transport service a nd taxis. Trans ort os a big problem for me here, suspect for you too. so make sure you keep this in your shopping list with them thy help with my samsung pad for reading they helped with paying and gettingto swimming and fitness classes they help with occupational therp and sycholog and neurolgs and genie and other doctors can get someone to helpwithgardinifneed.

fuck tired give your kids and wifehug tellme somethingyoudiddifferenttoday gie yourself some slack and do somethingnice for you today. Might not talk 2night bt try to read tomorroe after slep and star trek. fuck tired right now. sory about the swearing but try to wird like a talk and swearing helps.

gonna watch star trek nowand go to bed. keep yourself busy today.

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac after a seizure and a good sleep I usually get a brain reset. It can last a few days by maintaining rigorous sleep patterns. This reset has been better than most. Will be super duper lucid for a few days then will most likely fallback to "normal" not as bad as last message. Your last message sounded like NDIS is being difficult. If you'd like my advice about how to deal with them effectively let me know. Tomorrow I will pass on as much as possible while firing on full thrusters. My sleep time is now, will write as much information after my appointments that is asked for. Keep well, take it easy on yourself. Tomorrow do something silly, doesn't matter what it is, just be silly.

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac I have written larger than normal experiences and tips for navogating NDIS for what I've need. I hav tried to be more inclusive of the rural stuff too; this can make things harder. Trying to see if there is a method to email this to SANE for them to pass onto you maintaining our anonymity.

I try really hard not to apologise for things not in my control. But I do regret some things in the previous communication while in a bad way. I regret the mording about kids and memories, it was very poorly written, well intended, but very badly done. Also got a couple of things about NDIS support wrong. They didn't help with the dog, that was done through a morgage refinancing and drawing down of my superannuation. They didn't help with the e-bike, we just bought that.

Be good to your self today, when I asked you to tell me something silly you,ve done today, I meant deliberatly. Yesterday when we went for breakfast, I walked in the cafe and photo bombed some people by pulling up my t-shirt over my stomache, pushing out my belly as if pregnant, then pretended to be looking for belly fluff. So please tell me of something silly you've deliberately done recently. ps. we found my sandles in the freezed too...

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@McFluffy something silly today nothing comes to mind I played games w the kids that was our time being in the present.

My NDIS has been great I have 3 support workers during the week each bring their individual support around discussions on my MH two are experience in support work 1 is not my career navigates through the NDIS so I only turn up to appointments when new assessments for further funding are due w an OT.

If it weren't for the NDIS we would be treated as statistics not an individuals w specific needs.

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

@Daddymac your so lucky to have 3 support worker. I could only get funding for a cleaner and I had to fight for every cent of funding. My girl has Cognitive impairment it's a hard road

In response to: Re: Living w early on set dementia

Re: Living w early on set dementia

Hi there @Harry25 . Welcome to the forums! I'm sorry it's been so hard for you to get the support you need. How old is your girl? (If you don't mind me asking - no pressure to respond).

I'm hearing how you much time and effort has gone into fighting for what you need for you and your girl. It can be heartbreaking.

I hope you find the support and connection you deserve as you browse through the forums.

Hi @Daddymac @McFluffy @LilMapleLeaf - hoping you are well today.

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