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  1. Audrey1952
    04-02-2015 01:22 PM - permalink
    Audrey1952
    Hi, Tokahfang...Just got the news from my neuromuscular doc a few days ago that my diagnosis is PLS. Never heard of it until he explained it to me. And reading your post explains my situation. I was starting to think I was nuts..;) Thank you for the enlightenment.
  2. aegento
    02-23-2015 05:37 PM - permalink
    aegento
    Hello there.
    May I ask question?
    I just posted new topic under Do I have ALS headline. When the post get confirm by mods? Do you know?
    I know it's stupid question but ı registered 10 min ago and really don't know how it works. And also i want to some advice and opinion about my topic asap as everyone else.
    Sorry for disturbing you with these stupid questions. Thank you.
    Utku
  3. CaptainPlanet
    01-14-2015 11:38 PM - permalink
    CaptainPlanet
    So yeah, I still say ALS has ruined my life whether or not it is what is killing me. Yet, I know deep down. The never ending fascics in my diaphragm and body are the dreaded killer. I just didn't think it would take my breathing so soon. Every day I'm suffocating just a little bit more. I'm so terrified of the end. Caught in a whirlwind of Drs that don't listen. I've just about given up hope. Yet my complaints are nothing to the human suffering that ALS is causing right now as I type this. There are many out there that wish they were back in the position I am now. So where does that leave me? It kinda feels like no matter what I do my suffering goes ignored, compared to the next person. I'm invisible.
  4. CaptainPlanet
    01-14-2015 11:38 PM - permalink
    CaptainPlanet
    I can't PM you back so I will just communicate my reply here. I totally understand what a DIHALS situation can do first hand. It destroyed my family, many relationships. As it gets harder to lift my diaphragm I am getting increasingly bitter. My mother whom I share a house with sees me on the couch laboring to breathe day in day out and choses to treat me with nothing but anger and hostility. Not even a month ago I was caught in the middle of a scene where I was crying about my breathing and my arm (couldn't take anymore and sort of erupted) My sister was here and next thing you know i'm shouting every obsenity I can't muster the air for while my mother and sister stood over me clamoring for me to get a gun and kill myself. I had a moment of clarity where I wondered just how I got here. Before you know it my sister jumped on my and tried to strangle me in every literal sense. I was wide eyed and begging my mother to intervene but she wouldn't.
  5. CaptainPlanet
    01-11-2015 03:07 AM - permalink
    CaptainPlanet
    I appreciate it though I really am beginning to see how unwelcome I am here. This has really been an eye opener for me. I've really made myself unwelcome almost everywhere in my life since ALS/MND entered it. I'm just going to step back and read from now on, it's clear to me I can't contribute just yet and noone is interested in my experience; though I'm glad I kept my dignity by staying honest about my diagnosis when it would have been easy to just say "I have ALS". I'm still hoping for a differential diagnosis even if the hope is running out. That being so, I can't walk away without expressing appreciation for the value i've gotten and continue to get so thank you.
  6. CaptainPlanet
    01-08-2015 09:43 PM - permalink
    CaptainPlanet
    I also wanted to add if I may: I don't know what to believe anymore with my condition. I haven't been tested for CIPD MMN or any of the diseases 'when it wasn't ALS' stickies. I'm caught in a whirlwind with 2 Neurologists (One who is the Jesus of stem cell research and EVEN specializes in the diaphragm DR Nanette Joyce of UC Davis). I'm couch bound with a medi-cal pulm who won't consider a Bi-pap until March. I've lost 50 lbs (was 400 lbs) thinking it was my weight and my weakness in breathing continues to degrade. The unrelenting cramps and fascics in my diaphragm side and chest continue. I'm suffocating in a fat suit with a FVC of 70 ish. I have no choice but to keep coming back here and read. I guess all I can ask for is mercy. Please let me ask questions. I find it impossible to ask without including information about my experiences. Isn't that the nature of questions? I don't know...that is all I got.
  7. CaptainPlanet
    01-08-2015 09:21 PM - permalink
    CaptainPlanet
    I realize at this point that this community is modded with an iron fist as to which the barrier to entry is more than just limited to a diagnosis of ALS. I think it's important to remember here that I've been restricted to not posting about myself which doesn't allow me to make updates. It's been a month since then. Things change as do the progression of this awful disease. I realize that this community is full of sick, miserable, dying people and is a toxic nesting ground for friendship esp for someone like me with a personality that has proven to not mendwell with the hivemind. That being said, I kept reading, I found some helpful tips and pulled my chart from UC Davis and read the awful 'probable ALS' verbage with my own eyes. I knew I wasn't breathing right and the fasciculations were there. But that chart. My heart was played with enough, I thought it was over. I just wanted someone to relate to with my breathing issues by asking Nebhra. Can't I just do that?
  8. CaptainPlanet
    01-05-2015 05:20 PM - permalink
    CaptainPlanet
    I will say that from jumping further down the rabbit hole of this forum I found an incredibly helpful tip from a couple CALS who mentioned clearing of mucus. This made me more aware of clearing my throat which eases my breathing slightly.

    I truly believe that this community has pushed away a rare 27 year-old thoracic onset ALS patient. Just sayin. I wish I could have been treated differently in the beginning instead of being used as a punching bag for a couple of PALS that were having a bad week. Yet somehow i'm still paying for that. What a shame I think.
  9. CaptainPlanet
    01-05-2015 05:20 PM - permalink
    CaptainPlanet
    So it's Monday and I'm unbanned. Great...I've really lost the desire to reach out for help in my current situation so I won't be posting in DIHALS much less ask for permission. I sincerely doubt there are any PALS who are severely affected in their breathing with enough energy/mobility to respond to me anyways. I'm currently couch-bound. The weakness inspiring air has found it's stasis in a nice balance between feeling like i'm suffocating to lifting weights like a never ending workout in my chest/stomach with those lovely cramps in front and behind my chest. But there I go talking about myself again...am I banned again?
  10. CaptainPlanet
    12-19-2014 12:11 PM - permalink
    CaptainPlanet
    Cont:

    Now we’re moving fast we’re picking up on speed we got no energy creating fast as we tunnel deep & no time to think here we just react to the things we need hold on to your world

    Look around there’s no time left to stall
    (you’ve got to) stand up while you can don’t miss the call

    To live just in your mind is some kind of crime stuck in your station in isolation never too late for beginning to set your captive free

    Tonight the moment has arrived
    to live while we’re still alive

About Me

  • About Tokahfang
    If diagnosed, when was the diagnosis?
    07/2009
    City
    Richmond
    State or Province
    VA
    Country
    US
  • Signature
    Beky
    I have a unique mutation of SPG7

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  • Last Activity: 12-06-2015 06:57 AM
  • Join Date: 01-31-2010

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