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    Hi Wanda
    you have me thinking. I wrote/emailed to hospice, mnd team at the hospital. I didn't want to just wait for them to contact us I wanted them to know the situation. I felt like I was doing something. 😘
    when i can think of something profound i will update this.

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      Hi Hairbsb

      most people are referred to an MND clinic - and you should be.

      I've been taking Riluzol since diagnosis, 5 years. Need to keep an eye on your liver ALT levels

      Doug
      Diagnosed April 2017

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        Doug Carpenter denise. I want a fighting chance at life so thank you. X

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          London, Oxford, Sheffield have specialist clinics. Other regions too perhaps.

          Doug
          Diagnosed April 2017

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            Doug Carpenter just emailed. Cheers

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              Happy Victoria Day long weekend hugs for all! šŸŽ‡šŸŽ†šŸ‘‘

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                AngieCanuck long weekend hugs to you too.....and Happy Victoria Day
                Last edited by Tabbycat; 20 May 2022, 16:54. Reason: Accidently pressed post too soon....again!
                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                  Hugs here whatever day it is. I šŸ˜˜šŸ¤—šŸ˜˜šŸ˜˜šŸ¤—
                  when i can think of something profound i will update this.

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                    Hugs everyone everywhere what ever day it is! Need one today, my daughter and granddaughter were coming this weekend, but have gone down with sickness and diarrhoea x
                    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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                      Heather R oh no! 😢 that's very disappointing for you šŸ¤—šŸ¤—. I hope they make a speedy recovery and can rebook to visit very soon.
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                        Hugging morning to everyone. Lovely start to the day here.

                        Breakfast this morning: Marmalade sandwiches and I managed to get the lid off. sooo easy. I bought duerrs Marmalade and was just ready for a wrestling match and the lid came off. The bit that goes round the rim loosens with the main lid and hey presto it's off. We need more like this.

                        Sorry me going off on one.
                        šŸ’•šŸ¤—šŸ˜˜šŸ¤—šŸ˜˜šŸ’•
                        when i can think of something profound i will update this.

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                          So agree Denise, and hugs to You, Paddington bear and all marmalade sandwich lovers xx
                          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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                            Hugs here and a hug for Matthew. I think about him every day. I hope it's nice where he is.
                            šŸ˜žšŸ˜˜šŸ¤—šŸ’•
                            when i can think of something profound i will update this.

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                              Hugs for all and especially you Denise! I’m positive that Matthew is in a wonderful place. He is likely cuddled up and cosy, smiling down on you šŸ„°šŸ¤—

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                                Sending hugs. I've not been on here much. Got so much going on. The fight in me is escalating and hopefully I can post a positive update soon.... you won't believe the farce I've been dealing with.

                                In the meantime came here to share some much needed hugs with you all xx
                                Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                                Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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