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♥ Atsugi Atsugi is offline

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  1. piotr
    11-30-2016 09:49 PM - permalink
    piotr
    i tried to help. i had story with als 12 years ago and i kept being interested a bit in topic. So thats why i figured out my theory.
  2. help1127
    11-08-2016 07:59 PM - permalink
    help1127
    Thanks for your reply Mike. I'm going on 41 years of age Nov 27th and at this point I can't handle these issues anymore. I have been on anxiety medication and feel it works. I have had an EMG 8 months ago that showed re-inirvation on some of my leg muscles. But at the same time have mild stenosis in my lumbar and cervicalarea plus a small syrinx in my spine. Obviously my concern is with the re-inervation in my leg plus the pain I have that is primarily in my thighs and calves.
  3. help1127
    11-07-2016 12:58 AM - permalink
    help1127
    Mike,

    Just wanted to update you on some of my issues and see if you have any good advice as Imuch just lost right now. Some of the symtoms I have have stayed the same and others feel worse. First my legs constantly urticaria and have a burning feeling, left bicep gets sore after I use it to much as lifting items that are heavy, I fell exhausted all the time, twitching continues throughout my body, I have sleap apnea and use a c-pap athe night, Left hand an arm feels weaker but it's a strange feeling, I have lumbar and cervical stenosis plus some bulging disks. My neurologist has said no to MND athe this point but wants to see me in a year, he does see hyper reflexes in my knees but that's it. He just did a emg of my arms , neck and said it was clean. Don't know what to do from here as I still have these symtoms and they are really interfering with my life. Do you have any advice?

    Thanks,
  4. help1127
    11-06-2016 07:13 PM - permalink
    help1127
    Mike,

    I was wondering if I can some type of suggestions from you as a person who helps others on this forum.
  5. mrwrong
    11-05-2016 08:07 AM - permalink
    mrwrong
    Hi Mike! First of all Iīm from Sweden so there might my some typos:-) Iīm one of those whoīs reading a lot in this forum and I donīt got ALS. Iīve had 4 emg and a couple of Clinical exams and nothing that Points to ALS. However thereīs a lot of people here who is terrified and yet they havenīt got this horrible diagnose. Just woundered if you should open a subforum for those who want to continue discussion when itīs not als and they dontīt got any diagnose at this Point. Just a suggestion and thank you so much for your contribution to this site!!
  6. GaTechBMERoboticsTravis
    11-03-2016 05:10 PM - permalink
    GaTechBMERoboticsTravis
    I'm very sorry to hear about your wife. And I think you have a very good point about the actual need or usefulness of such a device that we had in mind, especially in the way that we were targeting this to patients in the later stages of ALS. So if I may, then, could you think of anything that you think could have made it easier for you or anyone else to care for your late wife, or anyone else dealing with this disease?
  7. GaTechBMERoboticsTravis
    11-03-2016 01:42 PM - permalink
    GaTechBMERoboticsTravis
    That is a good point you make, about people not necessarily being able to respond. I assumed that the people using this forum were completely able to contribute to it, and that was not completely thought through. What are your thoughts on such a device? Do you think people with ALS could actually use something like this?
  8. GaTechBMERoboticsTravis
    11-03-2016 01:42 PM - permalink
    GaTechBMERoboticsTravis
    Yes sir, I am a sophomore BME major at Georgia Tech. I have no personal relationship to or experience with ALS, but I'm a part of a BME Robotics team that is trying to develop a system that will help ALS patients interact with their environment. It's a two-part project; we want to design a arm-esque device that will do the actual moving, but more importantly, we are trying to utilize a pre-existing software that tracks eye movement to control this device, and possibly other tools/instruments as well. Obviously, we are trying to learn as much as possible about the experiences of people that currently have ALS so that we understand both if this device is relevant/would actually have use, as well as how to cater the intricacies of the arm and the control mechanism so that it could be used by as many people as possible.
  9. GaTechBMERoboticsTravis
    11-03-2016 10:09 AM - permalink
    GaTechBMERoboticsTravis
    I'm not sure if this is what you meant, or if I'm doing this right... But hello! Were you able to read what I wrote about my project on my thread before it was deleted?
  10. adrivtham
    11-02-2016 02:50 PM - permalink
    adrivtham
    Hi Atsugi,
    I am sorry for your lost.It Is my understanding that your wife had the C9ofr72 mutation .
    My husband was diagnosed in march of this year and he has the C9ofr72. It is my impression that your wife progression went very fast and I am afraid my husband's is too. In January we were jogging together, today he can barely go from the chair to the restroom.
    I am in the process of getting a minivan, and do modifications at home, but sometimes I think that getting all this loans and he won't be able to use this things. I am so overwhelmed with sadness and fears.
    His family support is none. Any way my question is how long your wife lived after the diagnosis.
    My husband is using the trilogy for breathing... I don't know like I said I am living in a nightmare

About Me

  • About Atsugi
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when were you diagnosed?
    12/2010
    City
    Orlando
    State or Province
    Florida
    Country
    US
    Biography
    Veteran familiar with VA medical benefits
    Occupation
    Retired military
    Interests
    Ocean kayaking and sailing
  • Signature
    ________________________
    --Mike

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  • Last Activity: Today 12:17 AM
  • Join Date: 01-11-2011

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View Atsugi's BlogRecent Entries
Latest Blog Entry

Posted 11-29-2015 at 05:08 PM by Atsugi Comments 6
Posted in Uncategorized
I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why.

That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works.

Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that.
...

Posted 09-03-2015 at 02:34 AM by Atsugi Comments 1
Posted in Uncategorized
When I first read EKR's On Death and Dying decades ago, I was elated that someone would bring such an important subject out into the light. But I was skeptical of her methods. Indeed, now there is much criticism for her unscientific approach. The 5 Stages of Grief taught in Psyc 101 are good food for thought, but they're certainly not the final word. You might find a book on grief to help. To be honest, I flipped through some books at the bookstore, but never actually took one home.
...

Posted 08-20-2015 at 05:39 AM by Atsugi Comments 8
Posted in Uncategorized
I was raised as an only child, with no concept of family and terrible social skills. Yet after my wife died, somehow I had to be a single dad.

My own father was usually gone. He fought in three wars, so it was only natural that I would sign up at 17. I served twenty years. I was conservative, I always voted Republican, and I believed in God. I was stationed around the world in Guam, Japan, Korea, and the Philippines. I toured Red China and several Pacific Rim countries. I served...

Posted 07-10-2015 at 02:48 PM by Atsugi Comments 11
Posted in Uncategorized
Up to now, I've always been curious why people would say "you're so brave" facing ALS. It just didn't make sense to me. After all, we're just doing what we have to do.

Friends and family have abandoned me. Sometimes, ALS will even destroy families. I've seen more than one spouse leave a PALS. Why?

People can't relate to ALS. The "terminal" part of the disease freaks them out. They can't get it out of their minds and they don't know what to say or do,...

Posted 06-27-2015 at 04:38 PM by Atsugi Comments 5
Posted in Uncategorized
It's been four years since my PALS Krissy passed. That was the hardest physical work I've ever done. Caring for a paralyzed person for months is a full time 24/7 job full of life-threatening surprises. It was REALLY tiring. I sometimes fell asleep in traffic.

Of course, now I think of Krissy all the time. During the first few weeks, I cried or teared up at night. Now I think mainly of the good times. There are no more tears. Just smiles.

So here's what happened after it...
Recent Comments
I think the book is...
Posted 03-25-2016 at 03:50 PM by BridgetStahl BridgetStahl is offline
My husband is a remarkable...
Posted 03-25-2016 at 03:43 PM by BridgetStahl BridgetStahl is offline
Hello Mike, thanks...
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Wow. Good words. I...
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Hey mike, good post,...
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