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Making a "Crap Book"

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    Making a "Crap Book"

    I am planning on making a Scrap book / memory book as a way of capturing some days out and memories while I can. It isn't easy to craft, but I'm hoping when I am much less mobile being able to look through this and re-live memories will help to keep me positive. Might be appreciated by my family too.

    As my speech is poor, it has become the "crap book" because the s sound doesn't happen 🀣 (and cos things feel pretty [email protected] at times).

    Has anyone else attempted something like this? Do you think it will be a positive thing? I did manage to sellotape the scissors to my hands when I attempted to wrap Christmas presents... I might need to manage expectations πŸ˜†
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    I haven’t but good luck with your scrap/crap book πŸ˜‰ xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

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      #3
      TinyLady sounds like a very positive thing to do. I've thought of it but yet to start...I thought more of my potted life story....with photos. 😎
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #4
        I admire all of you for your positivity
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          #5
          Brilliant idea. Memories are very precious things. πŸ’‘πŸ‘πŸ‘πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            Thank you all for your encouragement and support. I think there are days when I won't feel like it at all... but just a walk in my wheelchair in the sunshine is feeling like a treat these days and I need to try to enjoy everything and not dwell negatively on what I could do but celebrate it.

            LindaB - I think a potted life story sounds great! I'm putting photos aside in a folder for printing and got a blank scrap book for Christmas, so no excuse for me not to get started...

            Rosemary6NT I hope I can stay positive 🀞
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

            Comment


              #7
              TinyLady that sounds a lovely idea, help you appreciate what you are able to.
              ​​​​​​​I am just finishing a year with "Storyworth" (American online ), which my daughter set up for me. The website has lots of suggested questions to answer in different stories eg what was the happiest day in your life, person who influenced you most, what were your parents like when you were a child? My daughter has asked me a different question each week (some harder than others eg what do you think is the meaning of life?!). At the end of the year it is made into a book. You can add pictures.
              I also have made a book each for my 2 children and grandchildren, before my hands got too bad, with photos and pictures and memories I have of them, trying to show how I appreciate them, their successes and also funny hiccups. Snapfish.co.uk.
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #8
                Heather R that sounds fantastic, what a great idea of your daughters! I might have to go and look. Not sure anyone is particularly interested in my answers - my family seem to be avoiding me (head in sand style) since my news, which is a bit awkward πŸ˜†

                I subscribed to Freddies Flowers while going through the uncertainty of tests and appointments - hubby and I love flowers and it has given us something to look forward to. Also gives my hands a challenge πŸ˜€
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                Comment


                  #9
                  TinyLady Don't forget to include things such as the names of your favourite perfume, novel, poem, song, TV show, film etc. etc.

                  I count myself very fortunate in that I've updated my memory box as the years have passed and made it more age appropriate as my kids grew up, but it's extremely unlikely that I'll live to see any grandchildren, but I want them to get a 'sense' of who I was, not just to have photos. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

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                    #10
                    Heather R Storyworth sounds a good idea...thanks for that.πŸ’‹

                    Ellie I agree for me it's also about little anecdotes of things I've said and done. Makes me who I amπŸ’‹
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      So many things to think about . One step at a time as they say x

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                        #12
                        Hi
                        lovely idea
                        ive started writing a journal for each of my 3 daughters as crafting was never my thing anyway
                        Diagnosed 17/2/22
                        summer 2020 - Left arm onset
                        Jan 2022 - breathing now affected

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                          #13
                          Sounds like a good idea and way to stay positive. Also a way to bring back memories of happier times.

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                            #14
                            my hands are way past any 'crap book' (that makes me chuckle as some of the words I can still say have the same problem!)

                            what I have done is spent an inordinate amount of time importing photos on to my grid pad for the same reason.

                            I think it's a great idea xx

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                              #15
                              Good to hear many of us are inspired t do a similar thing. My hands are not great, but I'm determined they will get it done before they give up working totally!!

                              Unfortunately not made any progress yet as I am so busy with appointments and the whirlwind of recent but late diagnosis. I'll let you know how I get on xx
                              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                              Comment

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