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OT: HEALTH STATUS

angelfish

angelfish

Well-known member
I have not posted here in a while. My name is Angelo Santia and I am from Toronto Canada. I have been diagnosed with Cerebellar Degeneration. I haven't been working for over a year. I've had my drivers license Revoked. I'm 54 years old and have no income. I have been declined to receive Disability Benefits (because I have an RSP). I am living off my RSP funds. Everyday my physical and Mental status get worse. My balance is poor and I use a Walker/Rollator to get around. This is an untreatable illness. I am trying to stay positive, but I am very bored just staying at home. My mobility is declining. I have been a member on this board since day one. I mainly listen to podcasts or watch UTUBE videos. Since COVID started I have had difficulty in getting to see doctors face to face. They would only do phone consultations. This is now slowly improving. I have seen 4 doctors so far, 2 more in the next few weeks. I have so far taken 3 Montreal cognitive tests. My movements and thought processes are significantly slower. There is no cure (so far) and I am just slowly rotting away.
 
I’m sorry to hear this Angel. I hope you are able to find something locally to do. Music. Art. We are always here. Feel free to reach out whenever.
 
Yeah man, I'm sorry to hear this.

If I can make a boredom suggestion: After I left my previous career I was incredibly bored until I fell down the rabbit hole with no bottom called photography. Fairly cheap to get into on the entry level (lol...hilariously expensive at an enthusiast or professional level), with a bunch of different styles that don't require a ton of mobility (macro, food, product, portrait, etc) and learning basic to intermediate post processing is 1) cheap *the adobe suite with lightroom & photoshop is 13 bucks a month* 2) incredibly powerful & 3) easy to learn with the massive amount of free tutorials available today. A bit of basic equipment, a bit of learned post processing knowledge and work that you'll be proud of is print ready. Your canvas for the day can be based on your physical ability. Able to get out to a park? Do some macro on plants, flowers, etc. Not feeling great and stuck inside, do some food or still life.

If you have any questions, feel free to DM me bro.
 
MindzEye said:
Yeah man, I'm sorry to hear this.

If I can make a boredom suggestion: After I left my previous career I was incredibly bored until I fell down the rabbit hole with no bottom called photography. Fairly cheap to get into on the entry level (lol...hilariously expensive at an enthusiast or professional level), with a bunch of different styles that don't require a ton of mobility (macro, food, product, portrait, etc) and learning basic to intermediate post processing is 1) cheap *the adobe suite with lightroom & photoshop is 13 bucks a month* 2) incredibly powerful & 3) easy to learn with the massive amount of free tutorials available today. A bit of basic equipment, a bit of learned post processing knowledge and work that you'll be proud of is print ready. Your canvas for the day can be based on your physical ability. Able to get out to a park? Do some macro on plants, flowers, etc. Not feeling great and stuck inside, do some food or still life.

If you have any questions, feel free to DM me bro.
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Thanks for the suggestion, but I can no longer situp at a desk chair for more than 10 or so minutes. I also have major back issues.
 
Hi Angelo... I'm mostly on the Canes board but like to visit elsewhere around ForumIce and I remember your username over the years... just wanted to wish you all the best health and happiness possible given the tough situation you described & hope you have a good support system around you - family, friends, etc... Good luck, fellow traveler. 🍻
 
StormChaserBH said:
Hi Angelo... I'm mostly on the Canes board but like to visit elsewhere around ForumIce and I remember your username over the years... just wanted to wish you all the best health and happiness possible given the tough situation you described & hope you have a good support system around you - family, friends, etc... Good luck, fellow traveler. 🍻
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Thank you very much 🙂
 
Oh man, so sorry to hear that.
I say reading books or listening audiobooks.
Maybe learn new language using free online courses or something.
Don’t give up, no cure doesn’t mean it can’t be stopped progressing
Please keep us in the loop
 
Shit man, this is brutal. I wish I had any sort of advice to help out. Hopefully your upcoming appointments can provide some sort of direction and at the very least, slow the progression.
 
What kind of stuff are you watching on YouTube? I watch an unhealthy amount of music reaction videos.
 
Have you been in touch with Health Care at Home? If not, i suggest getting in touch asap to set you up with a care coordinator.

They offer PSW support and can make sure you’re teed up for LTC, for if / when you need it.

This is cryptic, but also make sure that you let all of your wishes be known with respect to your care plan and how how want to be treated.

that aside, do everything you can to stay active mentally. Read, find hobbies, see friends, etc.

I wish you the best.
 
mbow30 said:
Have you been in touch with Health Care at Home? If not, i suggest getting in touch asap to set you up with a care coordinator.

They offer PSW support and can make sure you’re teed up for LTC, for if / when you need it.

This is cryptic, but also make sure that you let all of your wishes be known with respect to your care plan and how how want to be treated.

that aside, do everything you can to stay active mentally. Read, find hobbies, see friends, etc.

I wish you the best.
Click to expand...
Thank you for the suggestion. Thankfully I have a very supportive wife and mother that I live with. That being said my brain condition has severely hindered my balance. Getting around the house requires me to use the walls and furniture for support. While my wife is at work my 85yo mother cooks for me. I can still perform basic tasks like washing myself and starting my laundry, but I assume it will eventually get worse. I'm in a hurry up and wait scenario. I can't sit through watching a movie on TV as I am VERY anxious and frustrated with watching the world go by and not really able to participate. The main thing I would like to do is have a regular 9-5 job and positively contribute to society.
 
I am sorry to hear this, I hope you find some treatment to improve your quality of life. Can't offer much in the way of suggestions other than what's been offered, podcasts, audiobooks, etc. Maybe try some kind of VR to feel like you are somewhere other than your home?
 
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