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    Beginning or End?

    Is Rizol giving us time now or at the end? I ask as the shortest time possible is what I want these days. My life my choice.

    #2

    If that is really what you want (and nothing wrong with that whatsoever) - why take Riluzole at all? Just curious 🤔

    Love Ellie.



    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      I just don't see the point in prolonging if I have no one to care for, apart from you lot obviously. x

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        #4
        This maybe just not relivant If so I apoligise

        but I see a lot of similarities to dementia. I have a family history and was a nurse in elderly care.

        There is only about 2 drugs for delay of symptoms in the dementia field so many drug trails have crashed and burned around phase 3 and 4 in the last 20 years. Obviously no cure. The mantra in campaigning is "Care Today, Cure Tomorrow"

        and they only say medication delays 6 months at max.
        Mum has been on Aricept for 14 years and I now know many people that their symptoms have delayed in some ways so long with only incremential deteriation.
        So long that the original diagnosis was questioned and a second opinion sought and confirmed Alzheimers

        You cannot tell if it will work until you try it and there is no control group that is another version of you.
        So many people I know with dementia live what they call "beyond the diagnosis ie longer than the time scale" we were told 4 to 6 years in 2006.
        Dad is on the other drug and he is at 12 years, both live seperately and consider life worth living, with major alterations on what they can do.

        Mum is house bound and has a wide range of friends on Twitter and Zoom but only seeing her support worker twice a week, in the flesh.

        Sorry if this is not helpful. My care plan for dementia was disney movies, musicals, red wine (with a straw if neccessary) and cake (maybe liquidised), this would work I believe if I was the one with MND . Also going back to computer gaming if it was possible. But I am an introvert and I also live with my husband. Living alone with any illness is hard, mum lost all her friends she knew before dementia. Having support is hard to get used to. But made friends in the world of dementia. Some friends had a "normal" tragetory with dementia so mum has grieving and survivor guilt too.

        My Husband is struggling with inactivity and frusration at all he cannot do. can you talk to the MND nurse or the association?

        Best wishes

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          #5
          I lost my mum three years before she died due to Altzimers. So many people who I loved have died that death doesn't scare me, in fact I am looking forward to it. Sorry if this upsets anyone but truth hurts. x

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            #6
            Mathew, I read recently that trials had shown that Riluzone can prolong life by 9 to 18 months. But it’s hard to tell, even at the end of trials because our metabolisms vary. A pill that helps one person a lot may do much less good for somebody else.

            The MND SMART trial has started in Edinburgh and be in other regions soon. This isn’t necessarily looking for a cure although that would be a bonus. It’s going to test drugs that are already licensed for conditions other than MND with the aim of finding treatments or groups of treatments that would delay deterioration or improve a symptom or symptoms.

            Remember HIV, it was a death sentence in the beginning but now people with the disease can live a long healthy life while maintained on a collection of different medications. This would be a fabulous result of the MND SMART Trials. I’m thinking positive but I maintain my rationality. If it wasn’t beneficial at all I’d be disappointed, but w
            oul be philosophical. We’d just have to keep volunteering for other trials until some success either for those of us living with MND now and/or future sufferers.

            Can you please talk to MNDA to see what would they can suggest that would make your life more worthwhile to you. This being carers, speaking with an MND volunteer/s or some or other gadgets. I hope that you feel stronger and happier soon.
            Love Lynne xx
            Last edited by Lynne K; 16 August 2020, 22:49.
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

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              #7
              Thanks Lynne. I have had more conversations with people who were trying to help me than I can remember but at the end of the day it's just words. I'm not going anywhere just yet but I don't want to wait for the man. 😊😊 x

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                #8
                How was the Army Matt?
                Copyright Graham

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                  #9
                  Lol I sadly have never served.
                  ​​​​​

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                    #10
                    I thought you did, my mistake.

                    My thought was to contact the Army and the Army to offer a 'buddy' service. Our life of experiences is much undervalued.
                    Copyright Graham

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                      #11
                      Well at least one of every generation of my family has served so I guess it's in my blood 😊

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                        #12
                        Originally posted by Graham View Post
                        I thought you did, my mistake.

                        My thought was to contact the Army and the Army to offer a 'buddy' service. Our life of experiences is much undervalued.
                        Hi Graham, are you ex military?
                        I am, and think we have a different view about situations.
                        I have pretty much accepted what I got, and intend to work with what I'm given, very similar to postings, you make the best of it cos you know you will be moving on in 2 or three years.
                        Perhaps an idea for you Matthew?
                        Diagnosed 2nd Jan 2020
                        Both arms/shoulders affected, left worse than right.
                        Progressive Muscular Atrophy suspected

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                          #13
                          Hi Beemer, Matt,
                          Just a civilian. My uncle took a bullet at Anzio '43 and was posted to the Grenadiers after. Sadly, his entire platoon were killed.

                          My view is that I have survived MND. Many doctors/nurses have tried to write me off without success. I run a company and I am developing a care app. I also run my own care with Direct Payments.

                          Although MND is very tough, there are always battles to fight and it makes you want to wake up in the morning.

                          Yes, perhaps we will move sooner or later but like David Bowie, I hope to work/fight to the very end.

                          Regards
                          Copyright Graham

                          Comment


                            #14
                            Hi Graham

                            Great to hear you are getting Direct Payments, mum with dementia gets them (called Self Direct Support in Scotland).

                            Has been life changing for her to have only one or two named carers, who understand her. Rather than any old person, which was happening with home care.

                            Still at the PIP stage with husband, should hear by end of August

                            Mum and I have talked about end of life and quality or life but the deteriation has been so slow that she has been able to get used to each limitation.

                            She is now an avid Twitter and Zoom user as she has insight into her condition

                            (I hope my comparision to Dementia does not offend, the gradual or rapid loss of abilities as some similarities)

                            Glad of the support and information on the forum

                            Thanks

                            Comment


                              #15
                              Hi Dee,

                              Yes, DP/SDS works for me too. Like your mum says, consistency of carers is so important/critical. My app further lightens the burden.

                              Technology is such a boon and I am pleased your mum has had the courage to get to grips with it. She is now having great fun, like me.
                              Copyright Graham

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