Living with Neuropathy - Welcome to the group

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

John 2nd time
Initial blood test mean corpusclar hemoglobin up .4 Dr. Called me.they said other labs will come tommow.question: is this common with P N. ??

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

Try low dose Naltrexone. It has helped me.

Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve wondered what would happen if I got it stuck around my face and called out for help! Or maybe scissors ??? Yes, I know I can wear something looser, not even a real swimsuit. But I still have enough pride to want to look as normal as possible. I wear a two piece with a swim skort. Even that is painful when my hands hurt like this.
I belong to a wellness center with an indoor pool, so can swim twice a week year-round. I honestly can’t handle the whole experience (spandex, lane-sharing, chilly locker room, spartan shower) more than that. And that’s okay.

@ray666
It's never to late Ray.
I used to swim 5 miles a day. After swimming I'd drive across the street for an ice cream bar and maybe a candy bar. Everyone made fun I drove such a short distance. I told them “you swim 350 laps and see if you want to walk.”
I had to stop swimming after my shoulder surgeries.
after I finished my laps, I used to sink down 12 feet and lay on my back on the bottom of the pool until one day a lady screamed, thinking I was drowning. Good times.
Jake

There are maillot one-piece swimsuits from Swim and Sweat with front zippers. I have feet leg and hand neuropathy, and this makes getting in and out of my bathing suit easier. So glad for your access to a pool. I look forward to my weekly Aquatherapy, and plan to return to my aquacize class more often.