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  • Hi Steve,

    I had my neruo visit with results of emg and spine and thoracic MRI. No lesions. Still have clinical weakness in my leg and I do feel weak in my arm. I have noticed that I swallow a lot of saliva and the lump in my throat along with intermittent hoarseness is still there. Dr. Held off on lumbar puncture and is going to revisit it in 6 months with another brain mri. I know it's crazy but I really feel as though I could have bulbar onset. I get numbness in my tongue and lips. He did not do an emg for the tongue and mouth. Trying not to be anxious but there is something not right with the whole picture. Did blood work and vitamin D was low. Also attributed to als. Any thoughts?.
    steve, saw your happy birthday post--I have a tip for you on posing songs. when you go to post a link for youtube, type just your message and then post. then, edit it and put in the link for the song. no waiting!!
    Thanks Steve, I too don't know who it is worse for, ALS seems to consume the lives of everyone involved :(. I am definitely trying to get some help one way or another to relieve some of the stress around here, everything with my PALS has moved so fast we are just having trouble keeping up with the constant changes and needs, seems as soon as I solve one issue there are two more to take its place. For now we are just doing the best we can and try to laugh and carry on the best we can. I took a look through your photos and I love your flowers, I too am a big fan of gardening and my pets, both provide peace and comfort for me through all of this :)
    Hi Steve,
    Happy 4th of July to you! I'll be working but will probally go see fireworks afterwards. It's not my favorite holiday really since my mom passed away 16 years ago on the 6th. The 4th was the last day we had a family meal together. Dad got a decent report in Dallas from his ALS doctor so we were happy with that. He's currently at a standstill and progressing slow. We are praying it stays that way. Take care, Kim
    Hey steve! You are right, we are all constantly adjusting and kind of rolling with the punches when it comes to this disease. It does make you realize how important and special the here and now is! Spent 3 years changing our routines and adjusting with mom so I completely understand what you are saying! Also, I will let a little more spunk ouy haha. Just hard to do so with Thanks for all of your advice you seem really genuine and your messages always make me feel at ease!
    Ha, ha, that comment by her was very funy. I loved it too.

    Although, I really meant what I said. Had I met her while she was still single, I would definitely have proposed her. She's one of the sweetest human beings I've come across with, a truly inspiration in these tough times.

    I can't understand how people like that guy could be so rude to her when she's only trying to help him and also trying to reduce his anxiety as he definitely doesn't have ALS but well, at least he acknowledged he was wrong and he did apologize to her.

    Thanks, Steve for standing by her, very appreciated.

    i'm still around. not as frequently. I read ur posts as well. I don't know what happened to my pm or blog. hows ur wife doing? I had a diaphragm pacer in and it seems to b helping. I read a joke that I wanted to post for u but david bann on copy and paste kept me from doing it. typing is harder. take care hugs mp
    Have not been on in a while but wanted to see how you and your wife have been? You were one of the first people to offer support and responses and I really appreciate that because we were going through a rough patch! Hope you are enjoying some summer weather!
    does your wife like milk shakes and you have a blender? if so ckeck out gnc's muscle milk, store or online ( it contains protein, carbs, lots of good vitimins and minerals. look at monohydrate creatine. recommend you try this milk shake, cup of whole milk, muscle milk, creatine, virgin coconut oil, two scoops of ice cream, some fruit and a little honey, blend, enjoy. depending on fruit she likes I have used berries, banana, pineapple, grapes, apple, kiwi, ect. sometimes more than one kind, berries are highest in anti-toxin, especially blue berries, peanut butter is high in calories. muscle milk comes in chocolate or strawberry. the body needs protein, carbs and fat in proper proportion. start counting calories of everything she eats, as it takes lot more than normal for pals to maintain weight. questions, ask away
    Yeah that makes the most sense. Sometimes I'm not focused on the task at hand because I am thinking of 10 other things. Guess what you said is really all I can do! Thanks! Hope all is well with you
    Thank you for the message. I talked to my aunt and we are ok, (incident with her was a while ago) she means well but sometimes doesn't go about it the best way. Her intentions are all good just poor presentation. She has toned it down since then and has been helpful. As for the other woman i spoke to my parents (dad was maaaaddddd lol) We wont be inviting her over much.
    Hi Steve, got your message--it was a big hit! I was very proud but am glad I can start doing other things now! Hope all is well with you!
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