Today we took a trip to Papworth for my pulmonary assessment. I was impressed with the staff who were so considerate and explained everything. Good news is that despite having copd, my results were all good so I don’t have to go back for 3 months. Tomorrow is Addenbrooks for second opinion (though really I think it’s just a confirmation). Life is certainly busy since my diagnosis!
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That's a big vote of confidence for you Karen 👍👍Originally posted by Karen62 View Post
Hope Addenbrookes are as nice tomorrow as Papworth were. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Karen62 busy it can certainly be!!! Glad you had a positive experience 👍🏻😉xxInitial 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.Comment
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Than you Ellie, I was so pleased because it confirmed moving away from a busy main road has made a difference and I am so well aware of the massive impact a chest infection can have on me now. Here’s hoping about tomorrow 🤞🏻🤞🏻XxOriginally posted by Ellie View PostComment
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Another good trip to a hospital today without the mega long wait to be seen 😊. ALS confirmed and all care now moved to Addenbrooks which I am pleased about. Rather than getting down about it we went to Scottsdale’s garden centre and bought plants. Had a go on one of their electric scooters and loved having some independence back. Have told family no more tears we must enjoy life as much as we can.Comment
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Great to hear your strength Karen and enjoy your garden 😘Foxes Never Quit 💙Comment
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That attitude will serve you well Karen - today you are living with ALS, not dying with ALS. 😘🤗Originally posted by Karen62 View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Karen62 its great to hear your positivity. Love that you went and bought plants, that's my kind of solution to things. 🌱🪴🌾🌿🌷🌻Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.Comment
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Karen62 positive vibes from you...💙🙏😘💐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.Comment
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Mine too 😊. Our garden needs lots of work it had nothing in it expect 3ft high grass when we moved in in September, but now we are paying people to do the patio and lawn and just doing the fun bitsOriginally posted by Tabbycat View Post
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I definitely am Ellie, I am realistic about the future but want to enjoy life as much as I can xxOriginally posted by Ellie View Post
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