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Thread: Hello !

  1. #11
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Debbie and welcome to the forum;

    Your head must be all over the place because of the recent diagnoses but you post doesn't show it.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  2. #12
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    Hi Debbie.
    So sorry to hear of your diagnosis, ( my wife Mary was diagnosed in October last year ), it is very overwhelming, shock and a vast amount of information that you are initially unable to take in, it's good you have close family and friends to help and support you, and the people on the forum will supply any information or try to address concerns whenever they are able to do so. You are right not to look to far ahead, but at the same time be positive.
    Both my wife and I wish you well
    Tim - Mary

  3. #13
    Hi Debbie,
    I've just read your post. I was diagnosed 16th May and wondering how you feel now it's been a few weeks on?

  4. #14
    Sorry Debbie I'm new to all this and pressed the reply too son I just wanted to ask if you have found things have gotten any easier? if that's the right way to put it? I know this weekend I'm feeling angry and upset about being like this but hoping that the more I learn and the more people I meet on here that I will find ways to be positive and get through it better. It's not me to feel angry but I understand why I am. Wishing you lots of love
    Jo x

  5. #15
    Forum Member
    Join Date
    May 2018
    HI Cruisegirl
    I am so so sorry for your diagnosis . It's really hard isn't it ? Sorry also for the delay in replying. I had two years of frustrating tests and for a while it was hoped it was MMN or PPMS but unfortunately it has been confirmed as ALS . I was a primary school teacher and first felt a weakness in my legs when teaching PE. The weakness is confined to my legs at the moment and I am using a scooter and a wheelchair to get around. For me at the moment safety is the key as I have had some falls when I have been too stubborn to use the scooter. My diagnosis was probably expected but it is still an awful shock. A few weeks later and I am very up and down .Sometimes I am able to try to live for the day and not look too far ahead and the next minute I am terrified! People on this forum with far more experience than me reassure that these feelings do calm downand it is good place to look for advice and support.I also really hope you have support from a close family and friends. I wish you all the best in the days ahead.
    Lots of love,
    Debbie x

  6. #16
    hello debbie, i mite have sent a reply to you meant for chebs on here,if i have my apologies, im pretty bad with computers not used to the iconsand dont quite know yet how to send private msg or how to get around on here so much

    Seems like u and my mum have thesame diagonis.....i have read that some people take a few months till things settle down a bit

    I have read that if u are taking rilazole that there are diffeent makers and that they have different coatings on the tablet......and that also you can get liquid form also, im assuming those that can afford it get the liquid one.because it is easier to swallow.

    I have also read positive reports concerning cbd oil..... and that this is being sold in a number of high street outlets....and can have positive effects for 12 to 16 weeks with keeping some symtoms at bay.

    I have watched the vidoes on here concerning the ways of still eating and getting all the vitamins etc that are needed to fight back against this illness, the peg or rig.......from what i read the peg seems the best way.its a tiny sort of tube that is fitted,very discreet and cannot be seen under clothing.

    Tthe videos also show a number of people with their peg, and how they are very glad they got one fitted,and wsome wish they had it sooner, but they had not seen the info on here, and maybe therefore had lost a number of months worrying about other things whilst stuggling to swallow.

    IT easy for those of us who are carers or freinds and family to imagine why WE would do if we had the diagonis,and probably we all think we would go straight to the with my mum, she has decided without talking to us, that she doesnt want any sort of feeding solutions, this is most likeley because she is scared ,and frightened, and hasnt had the chance or advice to look on this forum, they have pretty much told me that they want to do their own thing for now, so i cant talk or advise her in anyway at the moment.

    Im guessing that no one wants to spend hours on here when u are diagonosed, yet if you do, i believe everyone would feel more in charge of the situation then they do now , once they have read the info and posts on here .

    do u do fb? much love and positive vibes to you, and sorry if i send you a mail for chebs on here..... maybe u could foward it to her.

    Im off to find more info concerning cbd oil....i will go to a specialist shop here in glastonbury and will post up what i find out briefly.

    SO debbie, if i could spk withmy mum i would say the day at a time, stay positive, its well known that negative thinking with any illness does effect the body.....get the peg slightly ahead of ur own symtoms, and perhaps get the technology regarding comminication also asap,even thou u may not need if for months or years,.... get used to it, match it too ur tablet or whatever computers u have.....the more things you do in advance is better,.... then you are ahead of the diesease....... rather than the disease chasing you.

    Everyone here is fighting ......and for me ,as someone without the diagonosis, this is so inspiring to see and read about......for those of you that have had the diagonis for years, your info and openess leads the way for those of us that are following behind, you hold light for us, and for new people who are coming every day newly diagonosed. and i cant say thankyou all deserve a big gold medal....and love from us all.....jeremy xx

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