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♥ Atsugi Atsugi is offline

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Showing Visitor Messages 1 to 10 of 420
  1. Tedstehr
    02-18-2018 02:51 AM - permalink
    Mike, you are one of the stars of this forum - helping those who need your help the most!
    Wow, that is incredible you worked building Epcot. You must have a completely different view of the park than us tourists.
    We may have some time on the Wednesday morning before we head down south. We arrive on Apr 22nd, Epcot, Monday, AK Tuesday and then off. Do you live nearby? Please have patience if I don’t return your message right away. I am bad at getting involved with other stuff and not checking.

    I didn’t check this week because I did my last work trip last week and was in Salt Lake City and then Washington State near my house. It was gruelling even though I got wheelchairs through the airports. Strangely, I got very depressed after I returned. Maybe a manifestation of jet lag? Or exhaustion?
  2. WeirdTim
    02-17-2018 04:49 PM - permalink
    Greetings, was diagnosed April 2017 with a second diagnoses as well. Take care, Tim
  3. Tedstehr
    02-13-2018 12:37 AM - permalink
    We are heading to your neck of the woods Mike! Two days at WDW then down to Miami to fly to Aruba. Do you think the weather will be good at the end of April or will it be hot already?

    Thanks Mike
  4. Vangie
    02-09-2018 08:46 PM - permalink
    Thank you for responding, hopefully some positive things will come out of my neurologist appointment. I have two little ones and I am scared to death. Thank you again!
  5. Vangie
    02-09-2018 04:21 PM - permalink
    Atsugi I am writing to you as I have read many postings and you seem very helpful. I have had two EMG NCS that have pinpointed mild neuropathy caused by my oral chem for chronic leukemia in my feet and bilateral carpal tunnel. My follow up with Neurologist is on the 13th. My left foot feels stiff as does both hands. I also have a twitchy tongue that is swollen on the sides and skinny up front. Beloe my left wrist, it twitches under the skin now almost constantly but itís not felt just seen. Feet twitch the most. My left shoulder hurts almost an arthritic type pain and bicep is a bit shaky. My left ear, inside, feels like pins and needles, truly an odd feeling. My oncologist did confirm some mild atrophy yesterday at my appointment. It is my left hand, under thumb. Most mornings while trying to wake up I have left arm involuntary muscle movement and it makes my left hand close in a crawl like motion? Is there anything of concern here? Thank you for being helpful and kind.
  6. Andrea1653
    02-03-2018 07:56 PM - permalink
    Thank you for the Info. I am able to view your PM but not respond to it. Yes, unfortunately I am still here. For two reasons, really. The first is that my symptoms, atrophy and weakness, are getting progressively worse and are spreading to other areas of my body. I have a neuromuscular specialist appointment at Ohio State, but the earliest they could get me in is in mid April. While I am not seeking help from a psychiatrist, I have been working with my gp and i am on medications to help me deal with my anxiety. The second reason is that I want to be able to help people who I believe have BFS. There isn't a lot of support out there, and I wanted to try to redirect some of the BFSer's to a really great BFS support group on Facebook, which is why I inquiring about PM privileges. Thank you so much for taking the time to respond to me about the PM, I really appreciate it.
  7. Andrea1653
    02-03-2018 12:27 AM - permalink
    Hello, Mike! I don’t meant to be of an inconvenience to you but I was wondering how I can private message people. I don’t see it as an option and I wanted to be able to talk to some individuals without it being publicly viewable.
  8. JacobF
    01-20-2018 02:10 PM - permalink

    I have contacted you before but just wanted to give you an update. I have been having these weird symptoms for just over two years now. Body wide twitching, some exercise intolerance, Achiness in shoulders, hips and Calfs/ankles. No clinical weakness at this point just a lot of perceived. I am still able to run jump and do push-ups. I jumped up on the plyometric box earlier this week and both of my glutes went into spasm. I would appreciate your thoughts again. Does this sound more like BFS to you? Have you ever heard of anything like this?
  9. Lkaibel
    11-20-2017 09:50 PM - permalink
    Hi Mike

    After all this time I found your In Memorial post for your wife and your blog here. I plan to read it all, and your eulogy for your wife was wonderful. Thanks for sharing. She was lovely.
  10. blue sky
    11-16-2017 11:16 AM - permalink
    blue sky
    Hello Mike,

    I am sorry for your loss.
    I had a question regarding your experiences with ALS and the challenges at night. I found it difficult and I was wondering if a new communication device for night or sleeping time will help?

About Me

  • About Atsugi
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    Veteran familiar with VA medical benefits
    Retired military
    Ocean kayaking and sailing
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  • Last Activity: Yesterday 05:52 PM
  • Join Date: 01-11-2011


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