Progressive Supranuclear Palsy

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Mndovrmnky

Mndovrmnky

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Hello, my Dad has psp. It's a terminal degenerative brain disease with no cure. It will rob him of the ability to swallow, talk, see, and walk. The disease presents itself in different ways in different ppl but the outcome is always the same. He was diagnosed around 4 months ago after several years of him knowing something was wrong. He's still on his feet but is very wobbly and tends to bounce off the walls as he walks. The main worry just now is the choking.
For as long as I've been smoking dope he's been against it. But he has been open to trying what I've given him so far. I bought some cbd oil legally online. First I got cibdol but it's like 4% cbd. So then we got cbdbrothers oil which is 20%. He complains that it does nothing for him but we know better. I bought an extreme q vapouriser and he hit 3 full bags. It lifted his mood but made him dizzy and a lil anxious so that was a no. I then made some canna vape fluid for my kanger subox mini (nano). I tried to get him to use it but he doesn't like it. I finally got to the point where I had enough to make rs style oil, he tried this for the 2 nights leading up to New Year's Eve. On New Year's Eve he had a fall and hit his head, I shit myself thinking it may have been something to do with the oil. But he says he remembers choking and not being able to breathe so we're off the hook. Anyway they kept him in overnight and took an X-ray and a brain scan. They found a small bleed front left of the brain but they sent us home and said its nothing to worry about lolz. Anyway when he got home he asked for some oil and I've been spiking his soup with the cbd oil too. He seems to like my rs oil a lot and I'm very happy about it. A silver lining in the recent drama.
The disease works in a similar way to Alzheimer's and Parkinson's but presents differently. He gets stiff and sore during the day and he's always been a shit sleeper. Next step is some cbd strains to give him oil during the day without the dizzy effect. Like day nurse and night nurse cough syrup. :)

Anyway I thought I'd share, I'm relatively new to this carer malarkey and want to offer my support and hopefully get some support from some like minded folks.

Namasté
 
keiksweat

keiksweat

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Hello, my Dad has psp. It's a terminal degenerative brain disease with no cure. It will rob him of the ability to swallow, talk, see, and walk. The disease presents itself in different ways in different ppl but the outcome is always the same. He was diagnosed around 4 months ago after several years of him knowing something was wrong. He's still on his feet but is very wobbly and tends to bounce off the walls as he walks. The main worry just now is the choking.
For as long as I've been smoking dope he's been against it. But he has been open to trying what I've given him so far. I bought some cbd oil legally online. First I got cibdol but it's like 4% cbd. So then we got cbdbrothers oil which is 20%. He complains that it does nothing for him but we know better. I bought an extreme q vapouriser and he hit 3 full bags. It lifted his mood but made him dizzy and a lil anxious so that was a no. I then made some canna vape fluid for my kanger subox mini (nano). I tried to get him to use it but he doesn't like it. I finally got to the point where I had enough to make rs style oil, he tried this for the 2 nights leading up to New Year's Eve. On New Year's Eve he had a fall and hit his head, I shit myself thinking it may have been something to do with the oil. But he says he remembers choking and not being able to breathe so we're off the hook. Anyway they kept him in overnight and took an X-ray and a brain scan. They found a small bleed front left of the brain but they sent us home and said its nothing to worry about lolz. Anyway when he got home he asked for some oil and I've been spiking his soup with the cbd oil too. He seems to like my rs oil a lot and I'm very happy about it. A silver lining in the recent drama.
The disease works in a similar way to Alzheimer's and Parkinson's but presents differently. He gets stiff and sore during the day and he's always been a shit sleeper. Next step is some cbd strains to give him oil during the day without the dizzy effect. Like day nurse and night nurse cough syrup. :)

Anyway I thought I'd share, I'm relatively new to this carer malarkey and want to offer my support and hopefully get some support from some like minded folks.

Namasté
Oh man,I'm so sorry for you and your dad.i know first hand how bad it can be caring for my mom a couple of years back.I hope you find a good source of thc,cbd to really make a difference.if only I'd have known about rick Simpson oil,and had my grow set up back when my mother was wasting away from cancer.im sure id have spiked her morning tea if she wasent up for it.stay strong brother.you and your dad and we'll keep you in our prayers...
 
keiksweat

keiksweat

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Just
Thanks bud. All we can do is take it a day at a time. I've been steeling myself for what's to come on a psp forum. Fkn breaks my heart.
Be there for him.I'd give anything to be able to spend more time with my mom mate.keep on doing what your doing.find some good info and advice on here in positive.there doing miraculous things with rso now.stay positive pal.
 
ShroomKing

ShroomKing

Best of luck. Peace
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I wish all the best for your father.
We are experiencing a very similar situation in our family. For us it's an undiagnosed degerative brain disease that has stolen a loved ones motor function. She does not like medical Marijuana products , makes her loopy she says, and the doctors have given up. I can feel your pain.
All the best.
Peace
 
gravekat303

gravekat303

Premium Member
Supporter
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I just was blessed with 3 cbd cuts r4 harliquin and Charlotte web . I'm.always willing to help out the folks in.need shoot me a pm anyone sorry @ShroomKing if I'm breaking tos feel free to erase this If need be
 
ShroomKing

ShroomKing

Best of luck. Peace
3,127
263
I just was blessed with 3 cbd cuts r4 harliquin and Charlotte web . I'm.always willing to help out the folks in.need shoot me a pm anyone sorry @ShroomKing if I'm breaking tos feel free to erase this If need be
Thanks for the offer. But she won't take any more meds right now.
I gave her cbd spray, infused coconut oil with a .25 to .5ml dose rate(strong thc) and prime flowers. But she doesn't like any of it.

Best wishes to everyone and their family's.
Peace
 
Mndovrmnky

Mndovrmnky

133
63
Just
Be there for him.I'd give anything to be able to spend more time with my mom mate.keep on doing what your doing.find some good info and advice on here in positive.there doing miraculous things with rso now.stay positive pal.


That's the plan mate, I'm just .6 miles away so a phone call and I'm there as well. My parents run a decent b+b and I've taken on most of my dads roles. After this fall I may be doing the breakfasts from here on too. This is the disease they are going through to get to Alzheimer's as it's easier to track the progress of this disease and measure any effects any potential treatments may have. As such there are constant trials going on. No luck yet but they are testing something called nilotinib now which is a leukemia drug that has shown potential as a treatment to help clear tau. Albeit at a much lower dose. My psp forum has some ppl who have bought the drug outside of the trial too. appaerntly a trial with Parkinson's patients showed real change. A woman who hadn't spoken in 3 years started to be able to again. So much so that her husband asked for her to be taken out of the trial cos she complained too much. Lol.
Others fed themselves for the first time in years. Very promising, but I've read about the drug weakening the immune system.
 
Mndovrmnky

Mndovrmnky

133
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All the best to you and your father..
I'm a 24/7 caregiver for my wife.. Sometimes the lemons take more sugar than we have..
One Love

Sorry to hear about your wife mate. Yeah my Dad is feeling a bit sorry for himself just now. He was really struggling to type coherent sentences on his computer yesterday. This disease stops him from looking up and down so I'm going to hope it's the black eye, that and him feeling a bit down. Hopefully he will cheer up in the next few days.
Sending good vibes to you and yours mate :)
 
Mndovrmnky

Mndovrmnky

133
63
I wish all the best for your father.
We are experiencing a very similar situation in our family. For us it's an undiagnosed degerative brain disease that has stolen a loved ones motor function. She does not like medical Marijuana products , makes her loopy she says, and the doctors have given up. I can feel your pain.
All the best.
Peace

Thanks for the wishes mate, what are her symptoms?
Your hands are tied really when you can't get the diagnosis. Sucks man. Apparently my dads disease had been incubating for up to 25 yeas. There was a recent study they did on a psp cluster, I forget where. I think they concluded heavy metals had an influence. So all you engineers, wear dust masks when advised to.

My dads losing his ability to use his hands properly. He has about maybe 5 yrs and by that time he will be like a statue. It is a cruel world.

He has some cbdbrothers oil during the day but says he feels nothing. It's only 20% cbd and there's no high so nothing for him to moan about. My mums a genius though, for the night oil (thc) she sticks a blob to his parkinsons meds he takes before bed. No complaints about the taste this way. Does she have problems sleeping? I've read the night terrors can be horrible. My dad seems to love it for sleep and he won't remember what he was dreaming about too. He was totally against cannabis and seemed to have some cognitive dissonance from all the programming he's been through, I'd imagine there's a bit of that with your mom too.

It's weird, I didn't have a clue about what was happening with my dad, I quit my job a year before his diagnosis bcos I wanted to start smoking weed again. I started my grow and was bombarding my mom with info on cannabis treating diseases. By the time he got diagnosed my mom was a believer. That has made things a little easier. It's as if I'm right where I'm supposed be, doing exactly what I'm supposed to be doing.

Sending good vibes to you and yours mate :)
 
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We Solidarity

We Solidarity

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rs oil will always be the best option for pure medicine - I've seen it do more for the sick than any other form of medicine. I hope it helps your father along his way, I can't imagine what you guys are going through.

And just so you know ~ typically CBD needs to be ingested with THC to be most effective, try giving a smaller ratio for his daytime meds - 1:4 thc:cbd during day, 1:2 or 1:1 at night. Everyone has different sensitivity and everyone has different tolerance thresholds, luckily nothing bad will happen experimenting with it :)

Another option if you have access to raw flower is to juice, I usually juice buds right before the hairs start turning orange. Tastes very very intense, I freeze the juice in tiny ice cube trays and use 1 or 2 in a fruit smoothie. It feels amazing, it doesn't get you high, but eating that high of a concentration of raw cannabinoids and terpenes does something magical to your body. The endocannabinoid system is such a mystery!
 
Mndovrmnky

Mndovrmnky

133
63
rs oil will always be the best option for pure medicine - I've seen it do more for the sick than any other form of medicine. I hope it helps your father along his way, I can't imagine what you guys are going through.

And just so you know ~ typically CBD needs to be ingested with THC to be most effective, try giving a smaller ratio for his daytime meds - 1:4 thc:cbd during day, 1:2 or 1:1 at night. Everyone has different sensitivity and everyone has different tolerance thresholds, luckily nothing bad will happen experimenting with it :)

Another option if you have access to raw flower is to juice, I usually juice buds right before the hairs start turning orange. Tastes very very intense, I freeze the juice in tiny ice cube trays and use 1 or 2 in a fruit smoothie. It feels amazing, it doesn't get you high, but eating that high of a concentration of raw cannabinoids and terpenes does something magical to your body. The endocannabinoid system is such a mystery!


Thanks for the kind words mate :)
I just popped some cbd strains and am looking forward to providing him with meds during the day. He seems to be addicted to sleeping pills though. I've said to up his nighttime dose of rs oil, or have the normal dose an hour before bed then a 2nd same sized dose before getting in bed. He's been taking sleeping pills for years.

How do you juice the buds? What juicer do you use?
I have a juicer but I'd be afraid it would waste most of the goodness. I could blend buds into the juice though. Do you use the waste to make oil of something?
 
We Solidarity

We Solidarity

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263
Thanks for the kind words mate :)
I just popped some cbd strains and am looking forward to providing him with meds during the day. He seems to be addicted to sleeping pills though. I've said to up his nighttime dose of rs oil, or have the normal dose an hour before bed then a 2nd same sized dose before getting in bed. He's been taking sleeping pills for years.

How do you juice the buds? What juicer do you use?
I have a juicer but I'd be afraid it would waste most of the goodness. I could blend buds into the juice though. Do you use the waste to make oil of something?

when I had the opportunity to drink some from a commercial garden made with a juicer i wasn't paying attention to the juicer, it looked like a pretty expensive, heavy model. They had to use a lot of plants to make juice. I've made it in the blender, add a little water and some fan leaves, blend, add more leaves and water, blend, and add the buds last. you need to continually add water so that you keep it a thick liquid- the thicker the more potent - and once you're done strain it through cheesecloth. I've always just thrown the waste out - i usually go through at week 6 and pick larger fans, if i'm going to juice i'll pick some buds too and just blend them then compost/throw them out.
 
Mndovrmnky

Mndovrmnky

133
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http://ethnomedicine.org/neurodegenerative/


The theory is...
It's all about BMAA, plus all the other heavy metals and toxins that build up in the body. As we age we can't remove as much and it accumulates and causes problems. This stops the body's defence mechanisms from functioning properly. The BMAA somehow crosses the blood brain barrier and replaces the l-serine amino acid that coats our brains (as they have a similar structure) The L-serine is non stick, BMAA isn't, and this is why the proteins stick and cause build ups. The BMAA replicates at twice the speed of l-serine and that is why the folds occur.
We need to create a biome where our own defences aren't busy fighting all the toxins and heavy metals that flood our systems in this age of processed/gmo foods. There are also other things the body produces less of as we age (l-serine). Some of these can be absorbed through supplements, some you need to provide the building blocks for and some you need to clear all the shit out of the way for them to function properly.

This apparently applies to parkinsons, Alzheimers, als, parkinsonisms and more. But apparently it may not apply to these diseases if they are hereditary. I'm not sure 100% on that though.
 
Mndovrmnky

Mndovrmnky

133
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Oh yeah, my dad seems to be the same as before his fall now, maybe just a little bit more unsteady but much better. :)
 

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