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Living with Neuropathy - Welcome to the group
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?
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You’re welcome Laurie @artist01. Thank you. I always have helped my elders out of respect as long as they want the help. I understand the current technology and try to help them feel less isolated because of the virus. More recently, I have finally been able to video chat with an older woman who I have known for years. I give her credit for her abilities to follow my directions. She is happy to be able to see me now. Before we phoned each other. Using technology, I have also figured out a way to tutor high school students. On the screen they can follow my notes as I write. They do the same to show me problems or questions. It works out well remotely. In the beginning I tutored in person at the high school but with the pandemic I didn’t want to take the chance.
Laurie, sometimes you may be able to see the items available for shopping by either going to the store’s website or by downloading their app. I have an Ipad which makes it much easier. I bring my Ipad with me after creating my list. The app tells me in order in which aisle to find my listed items. It makes shopping very quick. Usually in 30 minutes I am done. My husband loves it. He follows it too to get the items into the cart.
I do the same for my mother who has a grocery store within short walking distance for her. We video chat so I can tell her where to find the items using her cell phone.
The more you use the internet on your device the easier it will become. No worries. You are doing well to earn a diploma, lol.
Wow, you are aware of the challenges with the double vision. I am glad you finally found to overcome it. My double vision is a deficit from the AVM. I had to figure that out for myself too. I did see 2 neuro ophthalmologist and put the information together.
I have to be cautious to not fall. It does slightly improve with time. I am hoping it finally settles before the surgery. I have no choice but to wait for 100% medical coverage starting 2/1/2022. So I don’t mind. The outcome will be better in the long run. Sometimes I cover my bad eye to give myself a break. It helps temporarily.
Keep on practicing with your device! I believe the frozen chocolate covered banana are called Dianas Bananas Baby Bananas, dark chocolate. I hope your grocery story carries it. The popsicles are called Chloe’s Dark Chocolate Pops. Hugs, Toni
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3 Reactions@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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2 Reactions@jakedduck1. I am glad you are going to have a roommate. I live alone too and I always wonder what would happen if something happens to me. I hope you don't fall again. You have such a positive attitude albeit the issues you have. Two thumbs up to you. The thought of roommate did come across my mind... for a few seconds. Well, you take care now, I'm sure many of us here in connect enjoy your posts. Keep them coming!!
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4 ReactionsHi Toni. Thankyou for everything. I sure know about having to cover your bad eye. When I developed this awful Giant Cell Arteritis, the first symptom to alert the doctors was that I suddenly went blind in my right eye...just what is so dangerous about that disease. Actually, I had attended our E.R. FIVE different weeks because I was feeling so unwell and experiencing temporal pain. Long story short, I have about 1/6th sight in that eye, which confuses my brain and causes an awful mess of my head. I often cover that eye, just for a break - just like you! Hugs, Laurie
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2 Reactions@jakedduck1
Hi Leonard, you wouldn't like carob. If I remember right it's not as sweet as dark chocolate and maybe kind of nutty tasting. I don't use it. I think they have carob chips for making cookies.
As for the dark chocolate and coffee comments, I am laughing my heart healthy self off. You are a hoot.
FL Mary
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2 ReactionsWhen 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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7 ReactionsUseful information for newcomers to the Neuropathy group: https://www.health.harvard.edu/diseases-and-conditions/new-thinking-on-peripheral-neuropathy
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4 ReactionsHello. These are good truths here. Bravo for you looking out for your mother and all who have needed that. Most people are so intimidated by our healthcare providers because in a very real sense, they hold the quality of our lives in their hands.
It is extremely difficult for the lay person to advocate for themselves and to equip themselves with the knowledge they need to do so. Having worked with over 80 providers in my 20+ years in patient care, I really got a good sense that they are just like us in many ways. Yet, I can still be intimated easily.
Patients have rights and Kaiser Permanente encourages them to become familiar with what they are with handouts, mailings and brochures on the wall. I love that. Their customer service will encourage patients to make a complaint when they call with a problem!
I care very deeply about each one of you and wish for you the very best everything.
Many blessings, Sunnyflower
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6 ReactionsI know! It's hard to be so close to 70!! Where did the time go? #$?! :%_$&?? ⌚🤔🥴🥺😲
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3 ReactionsJake, 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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