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-   -   Alcohol Induced Neuropathy Part 2 (https://www.neurotalk.org/peripheral-neuropathy/250134-alcohol-induced-neuropathy-2-a.html)

kiwi33 04-28-2018 03:31 PM

That all sounds very encouraging SecondChances :).

I am a big fan of journalling as well.

Wide-O 04-29-2018 01:28 PM

That sounds great SC!

Take note: it may, no, make that, WILL happen that you'll still have bad days. Like it's suddenly going into reverse for a while. Don't let that get to you. After those days there will be progress again.

But if you focus too much on the setbacks, the process will go slower. Just fight through them, or ignore them. You WILL get better, a lot better, as you are experiencing now. :cool:

And when you journal, you will see that these days are a normal part of the process, to be expected. They are not "bad news".

You are doing just fine, carry on! ;)

SecondChances 04-30-2018 07:40 AM

Quote:

Originally Posted by Wide-O (Post 1262059)
That sounds great SC!

Take note: it may, no, make that, WILL happen that you'll still have bad days. Like it's suddenly going into reverse for a while. Don't let that get to you. After those days there will be progress again.

;)

And this is why the health journal has been a very valuable tool. The set backs have been frightening in the past and it felt that I was no better than when I started this journey into sobriety and maybe even worst. The journal helped to keep things in perspective. I will say though that the gains have mostly been as of late and after over 8 months of abstinence. It makes sense that there was healing starting from day 1 but the damage was severe and thus not perceivable until it had reached a certain point.

It is disappointing that much of the information on the internet and that relayed by my doctors have said the damage is not reversible and permanent. For that reason first hand accounts are a valuable resource and it is imperative that suffers know that improvement IS possible. To what extent cannot be known but every small improvement is a gift.

Wide-O 04-30-2018 10:00 AM

Quote:

Originally Posted by SecondChances (Post 1262088)
I will say though that the gains have mostly been as of late and after over 8 months of abstinence.

Which is *exactly* how long it took me to see a real improvement. Before that, it was totally similar to what you have just gone through. I got sober in June 2012, and only saw real progress in March/April 2013. You can look back over the pages - 8 months was always the "magic border" (of course, that may be slightly different for each of us)

Quote:

It is disappointing that much of the information on the internet and that relayed by my doctors have said the damage is not reversible and permanent. For that reason first hand accounts are a valuable resource and it is imperative that suffers know that improvement IS possible. To what extent cannot be known but every small improvement is a gift.
Neurologists (and docs in general) hate/are uncomfortable with diseases they have little control over. When mine said it, it sounded like a death sentence. Finished. No more normal walking, burning pain for the rest of my life, every day. "It's irreversible, bye!".

I am now working with a neurologist on our non-profit team. You can bet she gets a lot of information from me - including the stories from this forum.

Right now, my "guesstimate" is that we can improve up to 80% from the worst moments. Perhaps we will find new tools/meds that even improve on that. Sure, the disease will still be there, i.e. is not "cured", but the life quality is, by several factors, if we a) keep sober and b) try to use the right diet/supplements/mindset.

Last Sunday, we went on a trip to Amsterdam. I drove (2 hours), we walked around there shopping (so lots of start/stop movements) and racked up 10 kilometers, and then drove back (2 hours again). Even though I had forgotten my medication, I was able to fight through it. Sure, there was pain, but not in a way it made me stop or incapacitate me. As soon as I could sit in the car (even while driving) the pain slowly retreated.

There is no chance in hell I could have done done that in the first 8 months. I couldn't even drive well enough to go shopping 3km further down the road.

SecondChances 04-30-2018 11:10 AM

It is the stories here that helped me stay the course during the low time of battling the addiction, PN pain, depression and the constant thought of "What have I done to myself". Sobriety slaps you into reality very fast and the pity party is not a good place to dwell. Had I not read the stories here and the hope of improvement, I could not have survived the early days. Hope is a powerful motivator.

I have become very good at distraction and ignoring the PN while in rest mode. Lately when I focus on it to evaluate, I am sometimes amazed that I am nearly pain free. The limb weakness is another issue but even there I see improvement. I still take a cane when out and about, mostly for my peace of mind and until I get more confident in my abilities. Little by little I will push myself to get out and do things and not be impeded by my fear, but I am not there yet and still very cautious. I would hate to get stuck in a situation that I was alone and not able to manage, and if out with others I would be humiliated and would hate to be an imposition. For these reasons I mostly stay in and watch the world from my window, but all in good time.

Isn't it funny that the 6-8 months window for improvement seems to be a major milestone? I am beginning to think it is not just a coincidence.

Thanks for sharing your experience Wide-O. I am happy to hear that you can be instrumental in spreading the word thru your organization that there is hope. I have not doctored for PN since in sobriety so perhaps my doctors were so pessimistic because I relayed that I was still drinking and they wanted to scare me into abstinence, but that mindset backfired on me. If this is my life and my destiny why sober up?
Thank you Wide-O for sharing your progress and your recent day. That is very encouraging indeed.

Wide-O 04-30-2018 12:01 PM

You are so welcome, and it's exactly for this reason Icehouse and then me and then all the regulars started/kept posting here.

We really have big plans with the non-profit. One of our doctors who treats alcoholics (and uses sober alcoholics to help him with his patients - which is our treatment model) has a success rate of ... 38%. That is HUGE. (other known treatments are between 3 and 10%, but closer to 3 than to 10). He thinks he can get that to 45% with a better support (like from our organization). As an added bonus: the sober addicts he uses get a massive boost from seeing how their efforts help, thus cementing their own recovery. Helping yourself through helping others.

We have the ear of our government, and they are convinced we have a "winner". With all the paperwork and setup of the organization done, we are now ready to do some real work.

Giving hope to addicts who suffer from PN is obviously a big part of what I/we want to do.

Funny aside: we gave a presentation to 25 nurses (who visit families with problems in their own homes) 2 weeks ago. I did my story, a lady talked about her husband's addiction and recovery, and one of our doctors talked about how he treats heroin addicts (for 30 years now).

His first slide is also the slide he ends with. It's one sentence:

"You can not treat addicts if you don't respect them."

He doesn't mean you have to respect the drinking & drugging, but you have to totally respect the person who tries to get sober.

Scaring them "straight" or treating them like unruly children simply does not work - it actually drives them back to drinking. My first attempt (which I did on my own, 5 months before going to rehab) failed after 3 months on ... the pain. I was motivated, but the pain was intolerable, grew worse, and I thought "if this is going to be my life, I might as well go back to drinking". Sounds familiar? ;)

I did not know about this forum at the time...

I was ready to stop 2 years before I actually managed it. With better support, better understanding of the PN etc., I might have gotten sober earlier than I did (not a guarantee of course, but I'm convinced I'm right).

Icehouse 04-30-2018 04:21 PM

8 months....hmmmm....yep, I ditched the walker and went with a cane (and soon forgetting the cane) right about that time....

Interesting....

Icehouse 04-30-2018 04:35 PM

Quote:

Originally Posted by Wide-O (Post 1262097)
... has a success rate of ... 38%. That is HUGE. (other known treatments are between 3 and 10%, but closer to 3 than to 10). He thinks he can get that to 45% with a better support (like from our organization).

Interesting note here: there have been studies in 2013 and 2015 that concluded that Faith-based recovery has a success rate of 43% whereas secular averages about 5%.

So, whatever model that Doc is using (assuming it is secular) is amazing and I can't wait to see the results of your own studies :)

kiwi33 05-01-2018 12:48 AM

SC, I am really impressed with your insight - I think that you are doing very well :).

Wide-O, it seems to me you are making a great contribution to the non-profit - well done :)!

Wide-O 05-01-2018 04:56 AM

Quote:

Originally Posted by Icehouse (Post 1262107)
8 months....hmmmm....yep, I ditched the walker and went with a cane (and soon forgetting the cane) right about that time....

Well, if that's a coincidence, it's a rather big coincidence in our small group, isn't it? Interesting indeed.

Quote:

Originally Posted by Icehouse (Post 1262109)
Interesting note here: there have been studies in 2013 and 2015 that concluded that Faith-based recovery has a success rate of 43% whereas secular averages about 5%.

So, whatever model that Doc is using (assuming it is secular) is amazing and I can't wait to see the results of your own studies :)

Secular indeed. Small bit of history: in 1950, 95% of Flemish people were full blown Catholics. The Catholic party had an absolute majority. Most schools, hospitals, psych ward, mutual funds, addict treatment (even unions...) etc were in the hands of priests and monks.

Today, about 4 or 5 % goes to church (mostly 60 to 70+), a slightly bigger portion goes to church 3 times in their life (birth, marriage, funeral) - but even that number is dropping.

The 60ties brought a huge wave of secularization. Some of our churches were turned into concert halls, hotels, libraries (not kidding). Most people now believe in "something", but it's not a big part of daily live. There is a huge shortage of priests (some of them have to service 4 to 5 communities/churches).

The AA-model does exist, but nowhere near the magnitude as it does in the US. It is seen by many as "too American" for our way of life/thinking. One of our founders has a 30 year stint with AA, and it's out of frustration that he started to think about a "broader" idea that includes all the existing groups, but puts a layer on top. Just getting all those groups (again mostly secular) under one umbrella was a huge task. Connecting them to the professionals in the field another one. But we(they) made it.

He happened to talk about numbers yesterday: he went to 2 AA groups, one with 20 persons, one with 10. Each year, he saw about 30 new people arriving, but the year ended with 30 people still. Over 10 years, he saw 270 people come and go (and get lost in society, booze, or death). He went to many funerals... These numbers are representative for AA as a whole in Flanders. (they might even be worse in the French speaking part, as they are typically less catholic.)

So: we don't want to *replace* those groups; we work together with them (they each agreed to do that). We will use addicts from their groups (but not exclusively), and train them to work with other addicts on a general level. It is not a recruiting tool - although some addicts may end up/feel best in AA or NA etc. if that is what they want.

My rehab was called "The Brothers of Alexian", and had gone the same route: from a 100% faith based catholic institution to a totally secular one. There are still 2 or 3 monks alive, but the hospital is run by the state now. We had christians, 2 muslims, non-believers etc. Faith isn't an "issue", and the method was CBT. I talked with one of those monks one time in 70 days. Nice guy BTW, and he was totally cool with me not being a believer, we had an interesting convo. :)

Just to say: whatever the numbers, we mostly deal with secular groups (and as you probably know the amount of "faith" used in AA varies strongly, even in the US). The 3 to 10% was also the accepted number in that rehab, in our scientific studies etc.

So, someone having a 10 times better result must be on to something... This doc is obviously also a member of our organization, and is now writing a manual (a state initiative) for all the other GP's in Flanders. Key is that whatever method is used (sometimes psychs are involved, sometimes not - it's all personalized to the addict's needs), there is always support from sober addicts that may or may not have come from self-help groups like AA, SOS, etc.

In short: we strongly believe that (most) addicts can/should be helped by the "first line" (GP's, social workers, volunteers), in an early stage, with the lowest possible threshold, and with the help of people "who have been there", and with their family/friends (the doc brings them in after a few sessions). If this works, this would not only mean more people that get help, but better results, and for a lot less money. The psychiatric hospitals and ER's can then be used for what they are meant to be used.

No wonder our government is going "whoa Nelly!" ;)

Quote:

Originally Posted by kiwi33 (Post 1262126)
Wide-O, it seems to me you are making a great contribution to the non-profit - well done :)!

Thanks. I was going to take it slowly, but it's properly exciting. I'm still watching my pitfalls closely, and take a pause when it gets to be too much, but this is something I want to sink my teeth in, and I'd be a fool if I didn't.

I will update the other thread about recovery when I have a bit more time, gotta prepare our meeting for tomorrow. :D


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