Newly diagnosed with Neuropathy - Advice?

I certainly wish I could do daily exercises. My pain is so bad that when I tried exercising gently for two days. I was put into even worse pain. Took a full day to recover. Even walking ramps up my pain to the point where my hands shake. So, I tried biking around out 55+ community: 1.3 miles one day, 1.0 miles day two. That took me almost two full days to recover. I am slowly losing my muscle mass and tone. Very discouraging.

Good morning!

You're going to get so tired of hearing me quote choreographer Twyla Tharp, but so many things she has said over the years have helped me to live with my PN. Reading this morning's posts about the importance of having a positive attitude and moving about (safely!) as much as possible reminded me of something of hers that I'd scribbled in my commonplace only a few weeks ago:

"With the time you've got left, choose to make your life bigger. Opt for expression over observation, action over passivity …. Be deliberate, act with intention …. Make each day one where you emerge, unlock, excite, and discover. Find new, reconsider old, become limber, stretch, lean, move."

Like Ed, my biggest problem is poor balance. I still get around pretty well, but lately, I've noticed that my "getting around" is never quite as Oops-free today as it was yesterday. Nevertheless, I'm okay with that. And that okay-ness came with acceptance –– acceptance without a surrender. I'm determined to keep plugging away, every day, do as much as I can for as long as I can.

Keep moving! 🙂

Cheers!
Ray (@ray666)

Ray, You are such an inspiration my friend!

John,

As YOU are an inspiration to me, John. To ALL of us here. I mean that with forty tons of sincerity!

And thank you for "Keep a Pluggin' Away." That's a keeper! I'll be listening to it several times every day––as I get ready to stretch (and don't feel much like stretching), for sure!

Ray

Hi Janet- you’ll notice many members have mentioned dealing with balance issues. These early days are a really good time to think about all you can do at home to prevent falls, which can lead to drastic consequences.
Big and little changes- up with the throw rugs, install grab bars in the shower/tub area, install higher toilets, rearrange furniture so there are no wide expanses to travel without something to lightly touch if needed. I switched sides of the bed I sleep on as the other is a straight route to the bathroom, I put anti-skid socks on before I get out of bed, I changed how I go up and down steps by moving to one side for touch balance and always use a rail if one is there. I don’t hurry anywhere or anytime- my neuropathy leg will cause the toes to “catch” and down I’ll go. When I walk, it’s always top-of-mind to keep good form- “exaggerated heel strike “.
I take my cell phone everywhere in or out of the house just in case. After a bad fall while walking, at my brother’s urging, I got a “smart watch”. It will register a fall, printing on the phone face will ask if you need help, you tap yes and it calls the number you have pre-entered (nearby relative or friend), if no connection, it calls 911 and gives your location coordinates.
I find the hardest thing about neuropathy is accepting that this is your new life, there is no going back to what you could physically do before, but with courage, resiliency, and determination, a good life is there to enjoy.

Hi Ray- I’m a retired OT. The best gift a patient can give a Rehab staff person is to be ready to “graduate”- you know you’ve done your job and done it well as, in your professional judgement, the patient is ready to be released from care, to carry the program on and to put your instruction to use on their own.
It’s common for people to find it hard to let go of the rehab folks, especially in the home setting. We are a new friend, visiting and working with you one-on-one, bringing positivity and hope. There is also often a bit of “magical thinking” that somehow, some way, this person has the key that will make me better.
If your coach really felt there was more to do, they would be on the phone to your PCP and FAXing notes and making arguments to the insurance people to extend services. It’s hard for Rehab folks to say goodbye too and it can be a relief when the insurance says “no”, as it’s an exit everybody understands and won’t be mad at you.
Don’t worry, do your program, hug your partner, and enjoy a good cup of coffee on the porch or deck or treehouse (wouldn’t that be fun?!).

Hi,@centre

As a retired OT, you probably had experiences similar to, if not a match for, those my OT has almost daily: clients having forgotten appointments, clients low-spirited or ill-prepared for a session, clients giving little if any thought to their progress and showing an eagerness to "graduate." I try my best to show an interest not only in my OT's excellent work but also in my progress: how soon might I "graduate" and what are my options, if any, after graduation?

"Magical thinking" can be powerfully alluring, particularly to a person who is feeling powerfully vulnerable. Medical conditions of various sorts––PN being only one––only began to play havoc with my life a few years ago. Not too long ago, a fellow who had only his annual PCP check-up and an every-so-often dental cleaning on his calendar, I awoke day to find my calendar had become a dense arrangement of medical appointments: two, three, sometimes four a week. I had to remind myself that I am a necessary participant in my health care, a partner holding a majority share of Ray's wellness stock; me, and and my doctors, all of us doing all we can to keep Ray in the best of health.

A cup of coffee in the treehouse? Now, that does sound like fun. 🙂

Cheers!
Ray (@ray666)

Thank you for your very detailed, and helpful information about how to prepare for balance issues. So many good suggestions, and there are definitely ones I hadn’t thought of. Hopefully that will be in the future for me, but as you say, it’s not too early to be thinking about safety and quality of life issues.

Dear Janet @duh1eye

> LEGS, FEET, of PAIN or LITTLE FEELING if any<
Does’nt (sp?) many of us have the same type of legs, feet, & toes problems… some pain or no (or little) feeling. I was there from my both rear-ends to the bottom of my legs. It was pain - deep pain when I tried walking & helping. That took me 10-15 minutes.
Spinal Fusion

> AFTER MY SURGERY <
A few mths ago, I had a choice: (A) take new painless meds or B) get a surgery?
Well, my pain was killin’ me. Yes, I still have less balance from my right side., but gettin’ rid of pain instead.

That doctor took hours, according to my wife. On the bottom of my back to the top of my rear-end made a Spinal Fusion. The next day, I felt better to wake up & going to a bathroom. Well, I was there for the 5-day and after went home. I had a few stuff to help my back. But during that the pain was gone!

Still my unbalance is there so I…stretching, fixing my strength, lifting , and, now asking in out kitchen w’out holding the 2 hands/arms with that roller. TEs, going outside I need that 4roller.

The pains gone. That leaves me the other 50% to get back.

Thx,
Greg D. @greg1956

Hello…you might be responding to my post about making sure I do strengthening and balancing exercises every day. And I do DO them. I did not, however, say that I liked to do them, that they were easy to do, that they were painless, or that I did them with anyone else around to see me cry through the pain while I did what I need to do to keep me out of a nursing home or hospital. I want to do whatever I can…pain or no pain…to kick the can a little further down the road with my family. I just might make it to see the Green Bay Packers win another Super Bowl!!