1. < Neuropathy

"Looking forward." Has PN taken that away from me, too?

Posted by Ray Kemble @ray666, Jun 11 8:58am

This morning I had to psyche myself up. At 2, I'll be meeting a friend for coffee; he and I used to meet for coffee every Wednesday at 2 –– but that was before PN. In my journal this morning I gave myself a pep talk: "Come on, Ray, don't have second thoughts about having coffee at 2. You used to love having coffee at 2. Instead of trying to get out of it, why don't you try looking forward to it?" And that's when I realized, since PN, how few things I genuinely look forward to. The realization troubled me. Pissed me off, too. For the first time it struck me how "looking forward" is something I used to do about a whole host of things. Somewhere along the way (since my PN diagnosis) I'd stopped looking forward to things. Has that happened to you? Have you lost the instinctive eagerness for social get-togethers, weekend road trips, neighborhood block parties, Saturday shopping –– coffee at 2? Have you given in to the loss of "looking forward"? Or have you tried to do something about it? What have you done? And have you been successful? I'd love to know.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | 23 hours ago
In reply to @ray666 "" … and together a decision is made on which is best." Hi, Ed. My neuro..." + (show)
@ray666

" … and together a decision is made on which is best."

Hi, Ed. My neuro doc gave me an example of exactly that just last week. He's the fellow who started me on EB-N5 two years ago. Hewrote last wee and asked if I might be interested in switching to a slightly different formulation, EB-M8, but encouraged me to do a little online snooping before I decided. I did just that, and decided yes. It felt as though my neuro doc and I made the decision together, just as you say. –

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Hi Ray, Do you have a link for the product or manufacturer for EB-M8? I can't find any information on it and was just curious of the ingredients.

Hope your day is going well!
Thanks much, John

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raebaby | @raebaby | 18 hours ago

I'm 83. I got peripheral neuropathy from chemo at 79. I had to stop driving because my feet are numb. However, that hasn't stopped me and recently I returned with family from Cancun and another trip to Texas that I flew alone to see my boyfriend from the 8th grade. I got caught in a tornado and had to divert to Oklahoma City. I take gabapentin which luckily sees to give me a 'high' sometimes. I did a whole bunch of walking in Cancun and it was so good for me. Next I am going to take the 24 hour trip to Portland on Amtrak to see my kids. Don't give up!

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Ray Kemble | @ray666 | 17 hours ago
In reply to @chawk "Hi Ray--At 77, I'm coming right up behind you. I'm hoping your loss of 'looking forward'..." + (show)
@chawk

Hi Ray--At 77, I'm coming right up behind you. I'm hoping your loss of 'looking forward' is temporary, as I'm looking forward to looking forward. I'm continuing my work in Improv, though it's sometimes challenging just to lift my foot up a step, over a random cable, and on to the stage. I'm also taking a standup class and, in reluctantly viewing myself on tape, realized just how doddering I could appear to the untrained eye. I was slow, hunched and lumbering-- Quasimodo with jokes. At that point, I decided to lean in on being The Old Guy, and the audience seems to welcome it. (If they don't, their loss...) In any event, I'm looking forward to doing more to deal with this amorphous neuropathy thing. I'm re-upping for physical therapy, hoping that this time I'll pay more attention and actually do the exercises. I'm walking with my Lekis, though it sometimes hurts. I've got a trainer at my gym who's punishing my lazy-ass abs and pushing me toward some esprit de core. And I'm, of course, on the endless quest for the perfect shoe. But I do fall into melancholy sometimes, recalling the not-too-distant times where I could take a walk without thinking about walking, or scan a crowd on the street without lingering on the lady with a little hitch in her giddy-up, maybe a fellow sufferer...Anyway, as hollow as it often sounds, I truly mean it when I say...hang in there.

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Hello, chawk (@chawk)

Good to hear from you! We've had some similar experiences, haven't we? The way you described negotiating the stage reminds me of precisely what it's like, especially when I was doing my last few shows, before PN told me to stay at home and be content binge watching Yellowstone. I was especially reminded of the last time I was called to read against a few other actors (I'd already been cast as "Reynold, an elderly man") and, because I'd entered the auditorium from the lobby, I had to mount the stage from the auditorium floor via a moveable flight of plywood steps. I recall going up those steps ever so carefully, not wanting the director, who was sitting somewhere in the dark, to see me fall and think, "OK, sure, I've cast Ray as 'an elderly man,' but I was hoping he wouldn't be THAT elderly!" LOL

Good luck in re-upping for PT. "Re-upping" sounds like you're betwixt & between right now. That's the situation I'm in. I need to find a good therapist. By "good," I mean a therapist who's had some experience working with people with PN. I've gone through spates of PT in the past, long before I was diagnosed with PN, because of my "mysterious," worsening balance troubles. I'd gotten so used to working with therapists, all very sweet people, who'd tell me on Day 1 that they knew oodles about PN, only to demonstrate once our sessions got underway that their definition of "oodles" and mine was different. I've enough PT handouts here at home, given to me over the years, enough pages to represent the felling of a major forest.

As you might guess, I'm wondering do I want put myself through this again? Or do I want to put together my own D.I.Y. PT program? Each option has its pluses and its minuses. Work with an outside therapist: the plus, motivation! (and that's a BIG plus for me), the minus, the $$$ co-pays (not much, but still … ); a D.I.Y. program: the plus, no cost (and flexible hours), the minus, the need to self-motivate (oh, God!). So, what to do?

The quest for the "perfect shoe"? I was on that quest for years, long before PN (and I still am, to a degree, but far less so). I've decided –– in other to relax –– that there is no such thing as the "perfect shoe," not when you consider the gazillion varieties we have when it comes to feet; then you add to the mix the varieties of PN symptoms: it can become quite exhausting. Back in the days when I was hot on the quest I'd imagine myself as a kind of Capt. Ahab nailing a coin to the mast and calling out to his men, "A silver piece to the first man who finds the 'perfect shoe'!"

Just now I'm on the quest to find a perfect Wednesday. Here's wishing you one, too!

Cheers!
Ray (@ray666)

REPLY
Ray Kemble | @ray666 | 17 hours ago
In reply to @bjk3 "@ray666 ~ Oh, Ray, you've got that right. I hope you do take up that acting..." + (show)
@bjk3

@ray666 ~
Oh, Ray, you've got that right. I hope you do take up that acting identity again. It would help others to see with their own eyes that physical limitations can't make you leave it until you're ready to let it go. I think acting is in your bones, like it is for my son-in-law who was able to utilize his talent at Second City in Chicago for season of his life. He's still so expressive, and for those of us who aren't, it is SO fun to observe! Sure, your parts may be shortened but you will look forward to that (both the acting and the shortness!) Just stay off ladders!

Blessings, Barb

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Hi, Barb (@bjk3)

I may or may not take up acting again. If I do, it'll be great, If I don't, that'll be great, too, or I'll do whatever is needed to make a "new life" (life without acting) great just as well. In a way, that's something that PN has taught me: Be ever-ready to adjust to ever-changing circumstances. Someone once told me beware of identity addiction. Be ready to slip and slide in order to make the most of how things must be; if I don't, if I resist with all my might, wanting to make things the way they once were when some things, like PN for instance, is incurable) I'm only dooming myself to a string of unhappy days.

I say all that and I'm still actor-enough to be ridiculously jealousy of your son-in-law and Second City! LOL Good for him!

Don't worry, Barb, I'll give all ladders a wide berth: no climbing 'em, no walking under 'em!

Cheers!
Ray (@ray666)

REPLY
Ray Kemble | @ray666 | 17 hours ago
In reply to @njed "Ray - An agreed upon joint decision always works best and I am starting to hear..." + (show)
@njed

Ray - An agreed upon joint decision always works best and I am starting to hear more and more about this type of patient/doctor decisions being made together. Good luck with the EB-M8.

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Hi, Ed (@njed)

We probably all have our little tricks for fostering a good patient/doctor relationship. One of mine is to always as a doctor something along the lines of "How's things in your life?" or "How's the family? Any plans for the summer?" I love it when I catch them off-guard ("Oh, what's that? Oh, oh … ah, my life's going OK. Thanks for asking.")

Ray (@ray666)

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