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    #16
    Thank you.
    Diagnosed May 2021 bulbar onset als.

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      #17
      Well Dad had his appointment today, they came to the house which was so much better. 2.5hr assessment, they need to wait for the interpretation of the results plus bloods before they make a decision. Apparently the Dr from the SMART trial was really nice. That's the longest contact Dad has had from anyone since his diagnosis in December. I actually think Dad would get a better standard of care being on the trial, at least someone would actually be interested. We've no faith in his current specialist nurse or none specialist consultant.

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        #18
        Great that the appointment was in your dad's house - imagine how long that would taken if it were in a hospital, + travel time 😟

        Originally posted by Drumond30 View Post
        I actually think Dad would get a better standard of care being on the trial, at least someone would actually be interested.
        That is just so sad to read and such a poor reflection of your Dad's so-called 'team'.
        ​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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          #19
          It would have been a full day all in and would have been far too tiring for Dad, he really couldn't have managed that right now so it's great they are back out doing house appointments. Hopefully that's the case for all SMART hubs, Dad is under Edinburgh.

          I'm actually appalled at the lack of 'care' whilst in theory he has a team they are impossible to get hold of. His specialist is a team of 1 covering a huge area and works 3 days a week. It took my Mum a week and half to get a response to voicemail message. Dad is struggling with breathlessness and the medication he was given isn't working. The only response they've had is that the team are surprised the medication isn't working but no alternative has been given. They are now waiting for the ventilation nurse....again.

          Dietician is less than useless, Dad has lost an unbelievable amount of weight, he is waiting for his PEG but Mum has been left to try and manage his diet the best she can, she's been ordering purees from specialist sites, build up drinks, its so so stressful.

          Sorry for the rant 😳

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            #20
            Drumond30 Gosh that is awful and deserving of a rant - that your mum is left choosing, sourcing and buy supplementary nutrion drinks when they are prescription items is a disgrace...

            Has she, or you, reached out to MND Scotland? 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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              #21
              Hi Ellie

              We did at the beginning and they said they would contact Dad's team themselves to find out what was going on and nothing ever came of it, so we haven't bothered again. Ventilation nurse is now coming on Wed so hopefully Dad might get some help with the breathlessness.

              The District Nurse came today and my Mum nearly put her out of the house, it was her first visit and she literally just walked into the house! She commented on Dad's weight and Mum told her he was waiting for his PEG next week and her response was 'well it will buy you some time!' Mum was so upset.

              On the plus side the consultant at the SMART trial sent me a message today to say he hoped Dad's appointment had gone well on Monday. How nice of him. Shows there are some people out there who care.

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                #22
                Drumond30
                The District Nurse came today and my Mum nearly put her out of the house, it was her first visit and she literally just walked into the house! She commented on Dad's weight and Mum told her he was waiting for his PEG next week and her response was 'well it will buy you some time!' Mum was so upset.
                What an awful experience for you, your Mum and Dad.
                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                  #23
                  Originally posted by Drumond30 View Post
                  She commented on Dad's weight and Mum told her he was waiting for his PEG next week and her response was 'well it will buy you some time!' Mum was so upset.
                  Oh. My. Days. What a callous numpty nurse 😱😱😱 I'll bet your mum was upset.

                  I'm so sorry that your dad's care falls far short of what's recommended, needed and deserved. 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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                    #24


                    Abstract from upcoming AAN 2023 meeting:

                    A 40-week Phase 2B Randomized, Multicenter, Double-blind, Placebo-controlled Study Evaluating the Safety and Efficacy of Memantine in Amyotrophic Lateral Sclerosis



                    "We enrolled 99 subjects and randomized 89 subjects. Patients treated with memantine (n=58) did not show a significant difference compared to placebo (n=31) in the rate of ALSFRS-R decline (-1.26 vs -1.23 monthly rate of decline, p=0.92). ALS-CBS and NPI did not significantly differ between the two groups. Serious adverse events were reported in 26% and 6% of subjects in the memantine and placebo groups, respectively. Neurofilament data is currently being analyzed and will be reported at the conference.



                    "Memantine did not slow the progression of ALS nor did it ameliorate the neurocognitive or behavioral effects of ALS."

                    https://www.aan.com/MSA/Public/Events/AbstractDetails/54463

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                      #25
                      Originally posted by svarog View Post


                      Abstract from upcoming AAN 2023 meeting:

                      A 40-week Phase 2B Randomized, Multicenter, Double-blind, Placebo-controlled Study Evaluating the Safety and Efficacy of Memantine in Amyotrophic Lateral Sclerosis



                      "We enrolled 99 subjects and randomized 89 subjects. Patients treated with memantine (n=58) did not show a significant difference compared to placebo (n=31) in the rate of ALSFRS-R decline (-1.26 vs -1.23 monthly rate of decline, p=0.92). ALS-CBS and NPI did not significantly differ between the two groups. Serious adverse events were reported in 26% and 6% of subjects in the memantine and placebo groups, respectively. Neurofilament data is currently being analyzed and will be reported at the conference.



                      "Memantine did not slow the progression of ALS nor did it ameliorate the neurocognitive or behavioral effects of ALS."

                      https://www.aan.com/MSA/Public/Events/AbstractDetails/54463
                      Disappointing, although I suspected it was the less likely of the two to be effective.

                      Meanwhile, further testing of more promising treatments with supplements remains suspended ...

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