Originally posted by matthew55
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Mindset - can it help?
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At well over 9 years, with classic als, I'd agree with all the points. Personally I struggled to handle the diagnosis for 6 months then decided to book a holiday and try to live a 'normal' life and not dwell on what might be. We had a famiily tragedy shortly after, so I had to support others. Clearly I am both lucky in terms of progression, but have tried to be positive too. My consultant said in her many years of working with mnd, those who were more positive did better...I guess in a degenerative condition, this can make sense.
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Olivia H also depends as you say on where you're 'at' time wise....for me early days so all the usual grief process to get through before I even know how I am -if that makes sense. For others- years in - the place they are mentally may be very different.
matthew55 life can never be the same with such loss...yes the love lives on.πInitial 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.ββββββ
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So difficult to stay positive when every day you are reminded that you cannot do some of the simplest things in life.
As a family we joke about it, it's a military way of dealing with dire situations, we seek the funny side of my condition.
What do you say to anyone when they greet you with "how are you?", which is an often used greeting statement?Diagnosed 2nd Jan 2020
Both arms/shoulders affected, left worse than right.
Progressive Muscular Atrophy suspected
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Originally posted by Beemer View PostWhat do you say to anyone when they greet you with "how are you?"
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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Have I introduced you to my "happy" cushion? A friend knitted it for me and said it would make me smile and therefore feel happy! Not sure if it would work if feeling depressed, but it gives me warm feeling that she cared enough to make me one.x
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This gallery has 1 photos.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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Originally posted by Heather R View PostHave I introduced you to my "happy" cushion?
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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Thank you all for replying. Noone has told me that i have a specific diagnosis, but i'd guess the 3 -5 year, ALS as i have a known wonky gene. I also accept that one feelings will chaange at different stages of the disease. If there really are studies that say positive mindset helps, i wouldn't be surprised. I consider myself very fortunate thus far, but have had a few moments wondering if i would still feel this chipper if there was a lot more progression. As it is, i have not felt surprised, shocked, upset or anything negative so far, and am grateful that i have not succumbed to any.
Reading about other conditions has made me wonder about my specific version of the disease, but, as long as i stay his whole, it really does not matter.
So sorry to read about the terrible losses some of you have suffered. Deciding to stay positive after those appalling results is a choice that not everyone can make.Mum died with MND in 1979 β My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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