Hi Alic, good to meet you as well, sorry you have to be here, but we're here for each other which helps us get through the rough spots. Me, I'm frustrated 'cause I can't get out of my bathroom without assistance, as it has 3 steps and now my arms aren't pulling me up the stairs enough. AGGGHHH!
There's a thread that Marta, SusanF and a bunch of us hang out at, look for it under "Recent" posts, it's called Come for Tea.
I gave Vona my name In a personal message here to search on Facebook and asked her to give it to you so ask her. I'm the only one so should be easy to find. I tried to pm you here but it says you've elected to not receive personal messages. I'd leave it here but you never know who is lurking. Borscht huh? Never had the pleasure! It sounds Russian or one of the Baltic States like Hungary or something.
Also, as for answering questions when someone asks about what's going on with me, my answer depended on who was asking. Sometimes if I didn't want to talk about it or upset the person I'd say it was back trouble and that I will be okay. If I was comfortable enough I'd tell the truth. Sometimes I'd say "Oh, it's a motor neuron disorder. I'm okay". Sometimes that was enough. If they really cared they'd ask what that meant and I'd explain it gently. It's good to let some people know what's going on and educate them a little. People really do care a lot. We need to help them not be sad. That in itself helps us to not be sad. My Mom says "if Marta's alright, I'm alright". I know that that's how everyone that cares about me feels. There are times to cry though and right now this is too much. Give yourself time to process all this. It truly is huge. I understand.
Also,this is just life. No one lives forever. We don't get to call the shots unfortunately. You and I do have the unique opportunity to choose how we feel and think and act during this time and if we can come above the emotion of it all, a trick that takes practice, there are lots of interesting lessons to be learned. People are going to be looking to you so they know how to feel and act in regards to this ridiculous situation in which we find ourselves. They will take your que. I choose love and laughter. We do have a choice in how to do this. I pray for miracles, smile a lot, stay upbeat as much as I can, stay meditative when I feel weak, show my love and concern for my husband, sisters, brother, friends and strangers, laugh a lot and cry sometimes too. Like I said, this is just life. Our task is to show them how much we love them and how to do this.
We are so blessed.
Good morning Alice! I tried to send you a private message but it says you've chosen not to receive them. I know how scared you must feel. Personally, over a few months I could see that sadly there are people in this world that aren't as blessed as I, that are in much worse situations that I, that pass at a very young age, that have nothing. My heart aches for them and their loved ones. I wish I could help them but can't.
Thanks Alic, great to be friends. Your sister is very special. There is a thread called cup of tea. It's in the off topic section. We are a group of good friends who laugh, cry and just support each other from day to day. Feel free to join us. It's great.
I'm glad you can see how beautiful the world is Alic Dear. As for your friends, you'll know to whom you can speak and things will come about naturally. This will all get easier to live with mentally over the months. People are so kind. It sound like you're very strong I'm happy to see. There will be tears and there's no getting around that and that's okay. You have a talent for writing! Very cool! You will need a Neurologist with whom you feel comfortable, a Pulmonologist that knows ALS, and your primary care physician for your team. They all should keep each other up to date regarding your condition and any test results. Well, I'm off to lunch Sweet Alice. I'll talk to you later!
I am so sorry for your dx and I hope you have a very slow progression.I found this site to be very helpful,we are all like brothers and sisters.If you have any questions please ask.I would say you are lucky to have Gretchen for a sister,she is a treasure for you.----------------Hugs Ken
I think you should also contact your local ALS Association. I just looked and there is an office in Victoria. they can be very helpful in answering questions, recommending doctors and treatments or therapies. Stay close Alice. ask any questions or vent any time Sweets.