Quote:
Originally Posted by Atticus
Hey SoulfulYin,
I've read this thread this morning and and am hugely impressed by how thoughtful and caring you are.
My background is also alcohol induced peripheral neuropathy. My PN too peaked after I had stopped drinking, maybe 2 months afterwards, but things slowly began to get better. I don't understand this mechanism, but wonder if the liver in detoxifying releases neurotoxins into the blood.
Here are some thoughts
Your mum seems to lack motivation. This is understandable. Are you familiar with the neuromodulator/transmitter dopamine? Dopamine release in the brain is triggered when you engage in activities you find pleasurable. It's a kind of reward system. Alcohol causes an addictive imbalance of dopamine release through drinking. It overloads the system and reduces dopamine receptor sensitivity. Alcohol itself becomes the reward. At the peak of my drinking I used to wake up and drink supermarket whisky.
When you stop drinking the lack of dopamine can lead to a sense of hopelessness and and emptyness. This combined with the additional time for reflection that sobriety inevitably allows can lead to reduced motivation and the fear that things will get worse, not better.
I wonder if overnight TV has replaced alcohol for your mum.
I know it sounds odd, but peripheral neuropathy and the pain associated can be a great motivator. The desire to get better and to see progress can be its own reward. I know it did for me. And improvement, believe me, reduction in symptoms is an absolute joy.
The Glymphatic System
The Glymphatic System is like the peripheral lymphatic system and clears waste products from the brain and CNS. Waste products accumulate in the brain extracellular space. Clearance is primarily achieved through sleep. When my symptoms peaked about a year ago during 1st lockdown I found I would sleep for hours and hours. I just wonder if overnight TV is the worst thing your mum could do. Other ways to boost glymphatic clearance is exercise and forward motion. I appreciate this is difficult but can you get your mum to walk outside and increase her walks over time? Don't underestimate the healing properties of sunlight and fresh air.
Brain detox, liver detox foods/beverages
Coffee but only in the mornings.
Decaffeinated green tea. This is packed with anti oxidants. I say decaff because this is the go to drink and sleep is very important. Available from supermarkets.
Hibiscus tea. Not cheap but loaded with anti oxidants
Pomegranate juice. Pure organic. Again not cheap, but this is a fantastic all round drink and a great prebiotic. When I stopped drinking I craved carbs. This drink is very sweet. But only have a small glass a day.
Walnuts other nuts
Sardines, tinned is ok. Omega 3 is anti inflammatory. Consider a fish oil supplement but one that is guaranteed mercury/metal free.
Flaxseed and Chia seed. You need to grind these and introduce in small doses given your mother's gastric bypass. Again loaded with omega 3.
The ORAC unit (Oxygen Radical Absorbance Capacity) shows that berries are up there with the highest anti oxidant function, and blueberries are the king of berries.
An oat porridge with added milled seeds and nuts and berries would be a great way to start the day.
I would also consider taking an Alpha Lipoic acid supplement, but again its not cheap.
Best wishes,
Atty.
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I appreciate the compliment-- I'm only trying to do my best for my mom, who's done her best for me ever since she had me.
It's funny you mention overnight TV, though. It's kind of all she's been doing when not doing anything else, which is to say, practically 80% of the time. If she's not in the kitchen getting something to drink or in the bathroom, she's in her room and on the bed 9 times out of 10. She does on occasion walk a few laps from the front of the house to the hallway, but it's not very often. I try to get her to at least do this more, and her PT tells her to as well. Even now, when she can manage to get up and down the stairs on her own, she doesn't walk very often.
We don't have a patio, we live in an apartment. We do have a little glass door that leads to a little 'burrow' kinda patio outside, if that makes sense? But there's very little room to walk around in, and it's dirty as all get out. But once she's confident enough, I'll try to talk her into walking outside. Or at least with the shades pulled so we can get some sunshine in the living room. Honestly I think she's excited about the idea of going outside again, now that the snow's all melted and it's getting warm out. The issue is, I think she'd be embarrassed about being seen with her walker. I can't blame her one bit, I'd have to keep my eyes glued to the ground if I went outside.
I don't remember if I mentioned this in a previous post, but my mom responds absolutely terribly to pain/discomfort. When her symptoms get bad, she's in tears over it and the absolute last thing she'd want to do is even get out of bed. It's actually been a few days since she even had a 'bad' day, though, now that I think about it. Just tonight it got bad for her when the gabapentin had about worn off fully (just before her next pill, actually), and that was when I noticed that. I try to tell her these kinds of things in hopes that she can see the positive side of this disease, if that's the correct term for PN, and she does tell me that it helps, but I worry sometimes she just says it so I'll be happy. Either way, I absolutely will try to get her to move around more and maybe even go outside and even just sit on a chair for a bit.
Personally? Even I would like to do that. Just go and enjoy the air and the sun. The situation never really called for me to say this, but I'm an absolute shut-in-- have been since I was done with school. Only time I ever went out was when my mom forced me to go to dinner or lunch w/ relatives or when I visited a friends house, but those moments were few and far in between. I suppose this situation combined with lockdown have changed my perspective on this hermit lifestyle I currently lead. I definitely see the appeal in going out a lot more clearly now, whether it be for a walk or to eat at an iHop with friends/family. Too bad we still have to wait for lockdown to really have get-togethers like that again. At least we have Zoom!
Sweets seem to have replaced alcohol for her too, but when I found out how high her glucose levels were and came to her with the idea of cutting back on it, she didn't really like that. But this was when her PN was a lot worse. She was quick to handle it, though. Accepted buying sugar free popsicles instead of the usual kind we get, we bought apples and orange juice and diet sprite too. Probably not the best way to really cut out sugar, but I at least hope it's a step in the right direction. It seemed to be to at least some degree, though. As mentioned above, she hasn't really had a 'bad day' until tonight since we cut back. I at least want to keep this up until we can get her glucose levels down and out of prediabetic range. I wouldn't wanna cut out sugar either, but I've been trying to both in solidarity with her struggle and because it'd be good for me too anyway.
She has coffee nearly every morning, but she used to put a lot of sugar in it. She started only putting a pinch of it in there since yesterday, but she felt good enough to take care of something really important today that she'd been putting off for 2 days now. She has tea of the green variety (I think? Don't know much about tea other than I don't like the taste!) sometimes too, but I don't think it's the kind you speak of. Will talk to her about this!
I was just thinking of flaxseed, too! I couldn't remember the name, but I mentioned it to her earlier-- I used to HATE when she put it on my waffles some mornings before middle school, but to this day I absolutely cannot deny its effectiveness. I swore it was magic back then, how it seemed to perk me right up after I ate. Now that I have the name again, I'm definitely bringing this back up to her.
I've seen some articles about alpha lipoic acid, and I brought it up with her some weeks ago too before we even heard the name of what mum had. We're very short on money, so we probably won't be able to get it anytime soon, but I'll bring it up with her. I should make a list...
We bought a magnesium supplement (it's supposed to arrive sometime today, even), and I was thinking of trying to get her some Omega-3 supplements too, but if she can get this all through food we'll try that way too. I just wasn't certain before, due to her gastric bypass. I don't know if she likes sardines, is tuna okay? She LOOOVES tuna, and tilapia. Tilapia, I can understand, but I don't know how she can even stand the smell of tuna.
This information is absolutely invaluable to me, I hope you're aware. I'm more grateful for it than I can even put into words, but I really appreciate the help.
Quote:
Originally Posted by Lara
Hi SoulfulYin,
Thanks for letting me know that you do have some outside support there. I had hoped you didn't think I was a bit odd for asking if you were an adult. 
I was just concerned that you may have been very young especially as you appear to have so much on your plate right now. I hope your Mum starts to feel brighter soon.
Others have suggested getting her moving more. That's something that's kept me going when nothing else could. If I stopped I never would have wanted to start up again. Keep on moving.
I don't know how cold it is where you are or if it's icy or something, but if you have a patio or a small garden, or even if you have a community garden, you could grow some herbs and vegetables in pots.
Anyway, thanks for letting me know you have some support or at least family to phone in case you need them. |
Yeah, as much as my mom might feel like it, my grandma and uncles do really care about us. They do what they can.
And no, I absolutely didn't see you as odd, or anything of the sort! I figured someone would ask the question, I never mentioned that I worked (which I don't) and that's typically what self-sustainable adolescents do.
I appreciate the concern and the words, and it does get pretty daunting for me sometimes, especially when you consider I'm not someone qualified for this kind of work and all that, but...well, at this point I don't think I'd want anyone else to do the job of taking care of my mom until she's able-bodied again, or close enough. I think I owe my mom at least that much, given all she's done for me.
I definitely will strive to get her moving more. She's been walking about 7.5-10 minutes whenever I can get her to, but I try my hardest to find a middle ground. I don't want her to be in any more pain than is necessary, even if both mine and mom's version of necessary would be none at all.
It used to be cold back when this all first started, but the snow and ice have all melted and it's beginning to get warmer now.
Thank YOU for your concern and your help. It means a lot more than I can put into words, truly. I'll keep you all updated on our situation as things happen. Things have been going relatively better each day, I've found. Won't be long before mom's got her legs about her again. I honestly don't know where I'd be if I hadn't found this place.