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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

sunnyflower | @sunnyflower | Feb 20, 2021
In reply to @jakedduck1 "@sunnyflower I don’t remember exactly what meals I had but I stopped all soft drinks ice..." + (show)
@jakedduck1

@sunnyflower
I don’t remember exactly what meals I had but I stopped all soft drinks ice cream. Haven't had donuts in 3 years. No frozen meals or any packaged foods & no fast foods and only went to restaurant on my birthday except when my friend brought me something which wasn't often. Very few canned foods, beans for salad, tomato sauce (when the girl cooks for me she uses fresh tomatoes) garbanzo's can't think of what else. Had fresh whole foods that had to be cooked. Had beans & lentils (because of iron content) & salads. Lots of veggies. Of course I didn't give up any of the 5 most important food groups, Candies cookies cakes pies and pastry but did cut back on sweets, that was the hardest part. I try to get plenty of iron since I donate blood products 2 and sometimes 3 times a month. But I decided to eat right except for candy and not to gain weight again. My doctor said I had to go to the gym and her office called every week To make sure I had been there every day. I was also ordered to see a nutritionist. She wanted me to have 1 strand of spaghetti and call it a meal. Looks like I'm getting a roommate, a guy who loves to cook. He must be as crazy as Florida Mary's (@imallears) son.
congratulations on your weight loss that’s quite an accomplishment. 90 pounds is the most I’ve ever lost at one time, one long drawn out time that is. 2 years I think it took.
Take care,
Jake

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Thx for the chuckle Jake! And good for you to be eating so fit! What candy??? 😉

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sunnyflower | @sunnyflower | Feb 20, 2021
In reply to @artist01 "Happy belated birthday, @sunnyflower, and you're just a kid too, at 68. The best is yet..." + (show)
@artist01

Happy belated birthday, @sunnyflower, and you're just a kid too, at 68. The best is yet to come. Big congrats on losing 200 lbs. Wow!!

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Thanks so much! How sweet of you to take the time! I appreciate your kind words. Blessings, Sunnyflower

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Leonard | @jakedduck1 | Feb 20, 2021
In reply to @sunnyflower "Jake, I 'm wondering if your nurse practioner was a little put off when you asked..." + (show)
@sunnyflower

Jake, I 'm wondering if your nurse practioner was a little put off when you asked her to check with the doctor bc she/he practices under their own license unlike physician assistants who practice under a doctor's license? I am out of order on these messages so please forgive me if I am off here. Good for you to ask anyway! Sunnyflower

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@sunnyflower
Yes very much so. She kept insisting she was right & I was wrong. She didn’t appreciate telling me I was right. She made me mad when she told me the pharmacy sent the medicine they would catch any errors. Yeah right.
I should have filed a complaint against her, for all the good it would have do.
Jake

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artist01 | @artist01 | Feb 20, 2021
In reply to @jakedduck1 "@bustrbrwn22 Nope, not personal at all. As often as I fall and hit my head I'm..." + (show)
@jakedduck1

@bustrbrwn22
Nope, not personal at all.
As often as I fall and hit my head I'm surprised I haven't bled out by now. My house looks like a slaughterhouse half the time. If I ever have Status seizures again I’m finished for sure if I'm alone. I may have a roommate from New Jersey shortly (I hope). The nut loves to cook, imagine that.

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@jakedduck1 Hi Jake. So sorry to know the danger zone you're in with your Status seizures. I sure hope you get that roommate from New Jersey. It would be such a relief for you to have someone living with you. And he can cook! What a bonus that would be!
My best to you. Laurie

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artist01 | @artist01 | Feb 20, 2021
In reply to @athenalee "When I was in end stage liver disease, living alone, and regularly in need of emergency..." + (show)
@athenalee

When I was in end stage liver disease, living alone, and regularly in need of emergency care, my friends chipped in and got me a mobile monitor for times when my support person could not be there. It was a blessing. If you fall they call immediately and if you don’t answer, an emergency vehicle is sent. It’s not too expensive and it was definitely comforting. There are several out there. The one I had was called MobileHelp. I too hope you get your roommate, but just in case...

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@athenalee I had a medical alert for 5 years when I lived alone. It was a real lifesaver. Now that I live in a seniors' residence, if I press the alert around my neck, 2 staff members come immediately to my apartment and an ambulance is summoned. I've needed an ambulance on many occasions, due to blackouts. Jake, that would be a good answer for you, too. Laurie

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1 reply
bustrbrwn22 | @bustrbrwn22 | Feb 20, 2021
In reply to @jakedduck1 "@bustrbrwn22 Nope, not personal at all. As often as I fall and hit my head I'm..." + (show)
@jakedduck1

@bustrbrwn22
Nope, not personal at all.
As often as I fall and hit my head I'm surprised I haven't bled out by now. My house looks like a slaughterhouse half the time. If I ever have Status seizures again I’m finished for sure if I'm alone. I may have a roommate from New Jersey shortly (I hope). The nut loves to cook, imagine that.

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That must be terrifying. It’s so great getting to know you here and your great sense of humor

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bustrbrwn22 | @bustrbrwn22 | Feb 20, 2021
In reply to @artist01 "@athenalee I had a medical alert for 5 years when I lived alone. It was a..." + (show)
@artist01

@athenalee I had a medical alert for 5 years when I lived alone. It was a real lifesaver. Now that I live in a seniors' residence, if I press the alert around my neck, 2 staff members come immediately to my apartment and an ambulance is summoned. I've needed an ambulance on many occasions, due to blackouts. Jake, that would be a good answer for you, too. Laurie

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This I guess is a macabre question to the whole group but what if something happens to one of us, how will the rest of us find out or do members just disappear into the ether?

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1 reply
Leonard | @jakedduck1 | Feb 20, 2021

@artist01
@bustrbrwn22
The medical device wouldn’t help me at least not for my Epilepsy. When I have a seizure I have no time to call out. After, when I’m post-ictal I am confused, in fact I don’t know I had a seizure even though my muscles ache and my tongue & cheeks are chewed up. Then I sleep from 8 hrs to 5 days. So by the time I figure out what happened I'm okay.
As far as terrifying is concerned not at all, At least not to me but probably are for people who see me.
Falling off the house, latter's, trees, getting stuck on a fence, that was embarrassing. The fireman rescued me. I'm so grateful for our emergency workers. But they were more terrifying after the fact.
Take care kids,
Jake

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2 replies
artist01 | @artist01 | Feb 20, 2021
In reply to @jakedduck1 "@artist01 @bustrbrwn22 The medical device wouldn’t help me at least not for my Epilepsy. When I..." + (show)
@jakedduck1

@artist01
@bustrbrwn22
The medical device wouldn’t help me at least not for my Epilepsy. When I have a seizure I have no time to call out. After, when I’m post-ictal I am confused, in fact I don’t know I had a seizure even though my muscles ache and my tongue & cheeks are chewed up. Then I sleep from 8 hrs to 5 days. So by the time I figure out what happened I'm okay.
As far as terrifying is concerned not at all, At least not to me but probably are for people who see me.
Falling off the house, latter's, trees, getting stuck on a fence, that was embarrassing. The fireman rescued me. I'm so grateful for our emergency workers. But they were more terrifying after the fact.
Take care kids,
Jake

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@jakedduck1 Gosh Jake, not good that's for sure. You don't have a prodome ahead of time to warn you a bit? I feel so badly for you. When I was having so many blackouts, I always knew it was happening and even though everything was going black, I was conditioned to press my Alert before I completely passed out.
For me, the Alert really works.
Where I live, here at the seniors' rez, we all have one. The main alarm is always going off on the main floor to summon the staff to the aid of the stricken person who has just pressed their Alert for help, and all H--- breaks out as 2 or 3 staff run pellmell for the elevators to get to the person. They even know from the Alert device which of our four floors the alarm originated from. I sure wish something like that could work for you, Brave One. X0

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Leonard | @jakedduck1 | Feb 20, 2021
In reply to @bustrbrwn22 "This I guess is a macabre question to the whole group but what if something happens..." + (show)
@bustrbrwn22

This I guess is a macabre question to the whole group but what if something happens to one of us, how will the rest of us find out or do members just disappear into the ether?

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@artist01
When I was on an Epilepsy forum in England. one girls sister notified us when anything serious happened to her. She had very severe status seizures. Members also had occassional meetings and got aquanted with the members & some family members and they notified us. One man who died of Status seizures asked his son to call me if anything happened to him. We were very close.
His grandson used to call me and would always say “will you tell me about my grandpa” It tore me up but I did my best to tell him what what I knew.
I have mentioned In the Seizure thread that a 17-year-old girl died from S.U.D.E.P. ( Sudden Unexpected Death in Epilepsy) her Mom contacted me. We always seemed to find out.
Perhaps people could give a trusted friend or family member Colleen’s contact info and ask that they contact her. In the English forum I requested a memorial section and I wrote a memorial tribute to my friend.
You said you lived another 40 years (so far) So if I live another 40 years I’ll be 108 years old and I am expecting you at my birthday party. You’re only going to be 125 then. Granted it won’t be the most lively party you’ve ever been to
Take care all,
Jake

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