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Thread: Feeling sorry for myself or what?

  1. #11
    missmuffett
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    Hi Bob,Thankyou for your reply and a big welcome to the forum!
    I have only posted a few times myself but have found great solace in the fact that I am not alone with this awful illness! Take care ! xxx

  2. #12
    barefik
    Guest
    Hi Missmuffett, I havent any answers for you but I can relate to everything you are saying. I was diagnosed in October 2015 and have become progressively less mobile since then. My daughter is getting married in September, Ihavent got an outft yet but I also dont want to spoil it or the day!! I seem to cry so easily, which then upsets my poor husband. Yesterday I started crying because I was so exhausted after cooking the simplest dinner! Sometimes there is no real reason at all.
    I am lucky that my speech hasnt been affected yet, I am planning to bank my voice soon.
    Take care, Karen x

  3. #13
    Dude
    Guest
    Hi Barefik What was your diagnosis because some mnd doesn't affect speech unless you have Bulbar onset (pbp) as I have . I may be wrong but I'm sure I'll be corrected. Dude x

  4. #14
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Dude View Post
    Hi Barefik What was your diagnosis because some mnd doesn't affect speech unless you have Bulbar onset (pbp) as I have . I may be wrong but I'm sure I'll be corrected. Dude x
    Sadly you are wrong.
    Speech is affected with limb onset ALS, PLS, PMA and any other MND.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member Ellie's Avatar
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    Barefik,

    You could be expierencing Emotional Lability - do a search as there are many posts on it. I think some people manage it well with antidepressants.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
    Forum Member Nettie B's Avatar
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    How are things today Missmuffet?
    Are any of those issues getting resolved?
    My hubby had emotional lability, strangely, just early on. It was one of his first symptoms but his was embarrassing in a different way. He used to giggle or laugh completely inappropriately, such as if someone told him something really sad.
    I'm sure your GP will be helpful and you'll have the down episodes under control soon. Sometimes the meds take a couple of weeks to have much effect but stick with it if you can.
    As for the tiredness. Trevor's neuro nurse told us that just HAVING MND is tiring...something to do with the fact that the nerves have to keep firing in order to get the message through to the muscles...not very scientifically put I'm afraid!
    So maybe do keep doing things when you can but at the same time be gentle with yourself.
    X Nettie
    Last edited by Nettie B; 31st March 2016 at 16:36.

  7. #17
    Dude
    Guest
    Thanks Ellie MNDA website is not clear. Dude x

  8. #18
    Dude
    Guest
    Tiredness, emotional lability and frustration are the movers and shakers in mnd. 'Normal' folk say they are dog tired but they don't know the meaning of tired and weariness. I get up every morning at 6.15am. My sleepover carer sits me on edge of my bed , gets me a brew and I watch SKY news, drink my tea and blow my nose to clear mucus build-up. Second carer arrives at 7am and I go the toilet, have a shower and, depending on carer, have a shave. They then dress me and load me in my little Pride Go-chair using an Etac patient turner, i cruise along the landing into my Wessex thru-floor lift. Exit lift into dining room and into living room and transferred to my recliner, drink my Ensure and brew , put MTV on and completely knackered, fall asleep. TBC Dude
    Last edited by Dude; 31st March 2016 at 17:08.

  9. #19
    Forum Member Barry52's Avatar
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    Quote Originally Posted by Dude View Post
    Tiredness, emotional lability and frustration are the movers and shakers in mnd. 'Normal' folk say they are dog tired but they don't know the meaning of tired and weariness. I get up every morning at 6.15am. My sleepover carer sits me on edge of my bed , gets me a brew and I watch SKY news, drink my tea and blow my nose to clear mucus build-up. Second carer arrives at 7am and I go the toilet, have a shower and, depending on carer, have a shave. They then dress me and load me in my little Pride Go-chair using an Etac patient turner, i cruise along the landing into my Wessex thru-floor lift. Exit lift into dining room and into living room and transferred to my recliner, drink my Ensure and brew , put MTV on and completely knackered, fall asleep. TBC Dude
    Hey Dude,
    Your fun packed day had me laughing my socks off. Talk about emotional lability!!!

    Barry
    Iím going to do this even if it kills me!

  10. #20
    Dude
    Guest
    Emotional lability & frustration : Never knew the term 'til it happened. Laughing in the wrong places. My eldest daughter dropped by the other day at the same time Mrs Dude was visiting and a small disagreement ensued, I wanted to interject, but not having the power of speech I simply laughed with frustration . My daughter scolded me for laughing. family do not understand mnd, how could they.
    Taking a tissue out of a box and blowing your nose, Spilling your drink when nobody is home, Not being able to let the cat out, asking people to do simple jobs that you did with ease pre-mnd , these are a few of the multitude of daily challenges with this stinking illness. I have pushed my family away because I feel 8 years watching me slowly crumble is too long, but I don't want to die yet. I want to get better and pick up the 3 youngest grandkids that have only ever seen me like this, disabled.

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