Hi Janie. I don't know when you will read this but I wanted you to know that after reading all your threads you have inspired me. I have not been diagnosed but am beginning the process which was initiated by all things an eye twitch. I live in Elgin which is a few miles north of Columbia. I was excited to see you were near by. I am in the Rock Hill area occasionally. I hated to hear you were no longer posting and will look for any you decide to do. I am very scared and which I could make it all go away but it is what it is I guess. The scariest part is I have no family to help me and I am not married. My sons are both in their teens and are not emotionally equipped with dealing with this disease so....I feel all alone. Anyway I am saying a prayer for you and thanks again for being who you are.
Hello Janie H, My name is Jenny and I have progressive bulbar palsy. I live in France and I think, by reading your posts, I am about the same stage as you are. I recently had a feeding tube inserted and am also on non invasive ventillation. It's odd because I wanted to get the feeding tube sorted out while I was still strong. Prior to the op I could still eat yoghurt and suchlike. I could drink smoothies with a straw. Since the op I can't even take the smallest sip of a smoothie or spoonful of yoghurt without choking. I hate this ventillation device as I have a full face mask and I find it claustrophobic but am persevering. There is no one that I know of here in France who has PBP so I would love to chat to you and swap info. I am 63 years old and have always led a full active life. I was diagnosed in 2013 Looking forward to hearing from you
Hi Janie, I haven't visited this forum since before the DC rally, but just saw the GM6 thread and that you were there. Sorry that you didn't get to be there when the larger group was, but it was awesome that you made it anyway and got to meet some folks. We really wanted to go, but we're in California and just couldn't make the trip in time. My PALS picture was there, though, on the boxes. (He was the one with the huge smile getting "kissed" by the dolphin.) It was nice of Nick to offer having pictures for those who couldn't make it in person. And thanks for posting the petition. I signed it off the Facebook site, but the more often it gets posted, the more often it'll be seen and signed (I hope)! Anyway, wanted to say "hi" and that there are people listening. You've had a lot to say and I've learned from you since my first visit here. Thank you, and best regards.
My PEG tube was very narrow, a calcium vitamin got stuck in the bottom of the tube, we were new at the tube and probably didn't flush fast enough, the new tube that was put in was two sizes larger and I have had no trouble since.
I am a biomedical engineering student, and this semester, a partner and I are working to develop a method to prevent feeding tubes from clogging (especially when administering medications and vitamins). I have spent some time shadowing in an ALS clinic, where I first became aware of the issue of clogged PEG and J tubes, and became passionate about addressing it. We would like to learn more from patients or caregivers with firsthand experience handling feeding tubes, in order to determine design criteria and ensure that we design something that would actually be helpful and valuable to users. If you (or anyone else on this forum) would be willing to provide your input, let me know and I'd love to private message you. Thank you!
Janie, Hello and THANKS for your message to my introductory posting. Your courage gives me courage - AND I may need to ask you some questions about equipment etc down the road. You really made me feel less afraid. xoxo Nancy
Hi Ronnie and Sissy, I was not big on the idea myself, I can still eat and drink but if my breathing got any worse, they would not have been able to sedate me, I'm still sore and it has been a few weeks but when I don't feel like drinking, I can just put it in the tube, really can't feel anything.