michael ring's meeting

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As a chapter leader for the GBS Foundation I basically have a couple of responsibilities. Besides being a point of contact with people who register as patients or caregivers with the foundation, we have chapter meetings. These are local events in a public place for people in your area to meet each other. Often there  a guest speaker who has something of interest to say to people who have GBS or it's variants.  Since we've been doing them all on zoom  lately I get to go to other people's meetings all over the world. I really enjoy going to meetings. Even before Zoom I did everything I could to get to as many as I could. It didn't occur to me why I was going to all these meetings until a wise person told me," Unicorns like being with other unicorns."

Anyway, a few months ago I hosted my own Zoom meeting and a bunch of people showed up. Some familiar faces showed up. and a handful on New Yorkers new to the GBS "family" Some other chapter leaders from all over the country said hi, too. It was okay. But it occurred to me that a chapter meeting doesn't really have to be regional. It could have a subject that interests people from all over the world. So I decided to have a chapter meeting based on a theme that I can relate to. I decided to set the agenda and talk about  something that is common to a lot of people who have had GBS. We all used to live somewhat okay lives until suddenly we had to deal with the effects of peripheral neuropathy. It didn't go away  or some of us.... Long-term residuals.

And right up top I want to share a very important link that was provided by my friend Jennifer the physical therapist. In order to locate a qualified physical therapist or occupational therapists go to the following websites. www.APTA.org and www.AOTA.org

 Here is a link to the zoom meeting

Topic: michael ring's Personal Meeting Room. Meeting Recording:

https://us02web.zoom.us/rec/share/yw8pEXaTemcJPwyUV0_hYbv_SYPKo9AOc1p3OfHLdmG2g2hNrlAj229sgnaEva1Q.3_fS9A5Dv7ZEOcmM

And needless to say I'm really grateful for the foundation to have given me the opportunity to do this. And I couldn't have done it without the help from my chapter leader from across the East River and friend, Danawyn  and my friend and physical therapist Jennifer.

People have been asking me to share this so I figured I posted as quickly as I could. Over the next couple of days I'll update the space below with direct links to a lot of the items that were mentioned during the meeting. If you have anything to add that might be helpful to other people, please feel free to put them in the comment boxes in this blog post.

One of the big takeaways from the meeting  is that there are plenty of items out there that will help us deal with  the fact that we have somewhat permanent nerve damage, nd activities of daily living can be challenging.  Occupational therapist work in a medical setting and have special catalogs that they're required to use. They can be full of enormously overpriced items.  Just use your favorite search engine and find the same item for a fraction of the cost.  I've done searches like this and what lots of stuff. Some of it worked and some of it didn't but it didn't cost a lot of money. Active hands is also a great company. Very patient / consumer centered. https://www.activehands.com/

• First I'd like to provide a link do an item of computer software that I didn't even mention at the meeting. I'm using it at this very moment. Voice to text.  I happen to be using an online program that is free and called SpeechTexter. (so they're not typos. That's what I said.)  I actually used to use products from dragon but when I change computers I lost my registration key. They work better in that I was able to say things like strike that to delete the last thing I said. They will also able to learn my Brooklyn accent because I tawk that way

• And I'll start with the suggestions that are getting emailed to me from participants

  Here are a couple of items I find handy.   The bed rail/rise assist is something I bought for my mother. The bed is built in such a way that it cannot slip between the mattress.  It has a dual function and I can move it from the bedroom to the sofa/chair area to help my mother get up from a chair.   I imagine I will be using it too when I have knee replacement. (Thanks Joyce). Towards the end of the meeting we talked about something that would help people get out of a car seat. It's an item I never heard of and I'm glad I learned about it. It probably wouldn't have helped me because my hands we're never strong enough and still our end to operate it but this looks like a good idea. It's something you can attach to the side of your car door to create a grab bar

   

   

  

  Drive Medical Folding Lightweight 

  Cane with Sling Style Seat

  
  

  

  Bed Rails for Stand Assist 

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• Towards the end of the meeting we talked about something that would help people get out of a car seat. It's an item I never heard of and I'm glad I learned about it. It probably wouldn't have helped me because my hands we're never strong enough and still our end to operate it but this looks like a good idea. It's something you can attach to the side of your car door to create a grab bar
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We talked about stuff to help people out in the bathroom. I've been using this,Ways to watch all sorts of parts of your body when you have weak fingers. This works really well .  It was also mentioned that you can put a bar of soap it's at the foot end of a stocking tied in a knot and attach the other hand to the shower door. That way it's easy to handle and if you drop it you don't have to bend down to pick it up. I'm going to try that.
• There's also a lot of things to help you squeeze the toothpaste tube. None of them work for me and I just reverse the order of things. Instead of putting the toothpaste on the toothbrush and then putting it all in my mouth. I have my own toothpaste and I just suck a little into my mouth and then I put the toothbrush on to the toothpaste that's already in my mouth.

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  We also talked about ankle-foot Orthotics. Devices that help us from tripping over my own toes. I'm currently wearing a pair of Spry Steps.  There are enormous lie better than nothing. But they are off-the-shelf items and I'm trying to negotiate with my insurance company to get more customized things to help me run faster. From a few people who use them I've heard some very good things about the Tururbomed Extern.  However for medical professionals I haven't heard good things. I'd like to see them in action but I'm afraid with the use I would put on them I would destroy my shoes. Unlike spry steps  they hold up your feet  by attaching a Contraption to the outside of your shoe,  by attaching themselves to the places closest to your toes.
• We talked about assistance dogs. This is where I learned a lot. I honestly had no idea of the things they can do. I didn't know they can open doors or pick stuff up. And I had no idea that a dog can help you with your balance.Diane mention to this website https://assistancedogsinternational.org/ and www.can-do-canines.org
  
  
  
• Lots of stuff helps us with our daily activities in the kitchen and the dining room.  Here's a picture of the stuff I was waving around during the zoom meeting. It includes a  weighted fork with a very fat handle. I remember when I came home from the hospital and try to use it. I was able to get my hand around it but I couldn't lift it. Instead we used that blue tube to make my regular silverware have a bigger handle. Also a spoon with a curved handle. When I was cleaning out my drawers I realized I should be using that now it would be easier. Head for some reason  one of my occupational therapists made me that knife/chopping device. It seems like a very big project for the occupational therapist. I also use this french fry cutter which cost only a few dollars.  And this ulu was mentioned as in the meeting