icehouse: how often do you do PT? i'm looking into it right now and can't shake the idea that 1 x a week doesn't do much, two would be better and three would be ideal ... but very expensive. what's your take?

meanwhile, i've moved to the east coast and am back on antibuse. have a neurologist appointment tomorrow where he's going to assess the damage i've done to myself by drinking and tell me that it's permanent.

i already know i've damaged myself. i can't stand for more than five minutes without one leg or the other crumbling. and my balance is crap. and i've started using a cane. and i can no longer stand up paddle surf. and i still haven't gotten over that california girl that i had to dump. sheesh.

ok. but ... onward!

Linter, I hope that the meeting with the neurologist is helpful .

Currently every other week...not enough, but it's all I can afford right now until insurance kicks in.

Linter, but having done therapy before, you can be given exercises to do at home and the follow up appointments are to monitor your progress and advance as needed. I believe that is what Icehouse is doing more or less. Once a week could well be more than adequate for an issue such as this. You were so lucky to get in to see a neurologist so soon. In the past I have had to wait several months to be seen. Best of luck with the appointment.

Yes, I have about 20m of exercises I do daily (mostly balance and coordination related) and my PT guy said I am already showing improvement.

My at-home exercises will become increasingly more difficult over the next few weeks\months as my balance improves.

Icehouse, that graded approach sounds good to me.

I'm going to quote this specifically, because in a way it is a huge misunderstanding that has caused a lot of unneeded grief over the years to millions of people.

He or she will be right in one way: there will be damage, and that damage will never heal.

The word they forget to add: COMPLETELY.

If this thread shows anything at all, it is that - although yes, there will also be some damage left that will not go away - you can do a lot of things to improve it massively.

If I think back of the pain, fear, debilitation, humiliation I felt at the moment I heard that exact same message (he didn't even say it directly to me, but to a student/assistant standing next to him, as if I was an idiot who wouldn't understand anyway), and then where I am today, and what I was able to achieve, I'd want to go back to the guy and smack him in the face. (well, OK, just shout at him then, it's just a matter of speaking on how angry this makes me in hindsight ).

One of the goals I set myself when I got involved in this non-profit addict support group is to convince the neurologists that they need to adapt their message. People simply get crushed by it. If they are still drinking, they will go "what's the point of even getting sober if I'm always going to feel this pain or can't even walk?" And if they are sober, they might wonder if just starting again to forget the debilitating pain isn't a better option.

Think about it: it's the worst possible way to say to someone they have an illness that can be *managed* - provided that the patient stays off the drink.

There are no miracles, they say. Unless you'd want to call the story of Icehouse one (I'm using him because it speaks most to us: from wheelchair to worrying about having a better balance while hiking or running again). My case isn't all that different: from a debilitating pain and hardly managing to walk 10 meters a day (office to bed to office to bed... and thinking about getting a wheelchair...) to rebuilding a big part of our house, starting a veggie garden, managing the upkeep of the whole house. From being unable to drive at all because I couldn't feel the pedals through my pain, to comfortably drive a group of 3 people to Paris & back in one day (730km).

(I even got a speeding ticket darn it! 143 where 130 was allowed. €45, so it wasn't that bad, but in a way I'm proud of that ticket! )

So... don't let that sentence drag you down. Concentrate on staying sober, be patient, and start doing what many of us did: look at your food, vitamins, PT, optionally medication, and improve step by step. Not everyone will "heal" at the same pace, or even with the same results, but improve you will.

Remember that when you hear the "verdict".

Linter, I think that Wide-O, has (as usual) offered you superb and encouraging thoughts.

Please read them carefully to help them sink in.

Wide-O, OMG, so soooo glad I logged on! I have been so despondent and fearful for the last couple weeks. The PN is very bad, I am coping sober with all kinds of major annoyances, stresses, disappointments, and money issues on top of my limbs getting worse. I often walk the line and wonder if any of this is worth it.
I thank you Wide-O for your post. I am guessing my higher power guided me to this site just now. I had my car keys in my hand and was almost out the door but now I believe that things CAN get better and this terrible PN pain is from the nerves healing as opposed to further degeneration.

Hello friends. Life challenges me and takes me to the brink, but then I log on here and see the words and inspiration that I need to stay the course. Everyone needs to know they are making a difference in the lives of others. Know that you all are making a huge difference in mine. I thank you for that.
Linter, I hope you will get back to us. I for one am wondering how you are and what the doc had to say.
My PN is very bad again today but mentally I am accepting life on life's terms. You all give me hope but I am hesitant to post lately as I decline. I seem to be getting worse and I don't want anyone struggling with PN and sobriety to ever give up hope. Talk about a buzz kill.