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    Diet advice

    My husband was diagnosed with ALS 4 1/2 years ago he has lost muscle in right arm and leg compared to some he feels lucky however over last six months he has been loosing his appetite and loosing wait he is awaiting an appointment with dietician for last 3 months and being told it could be at least October before he gets appointment due to backlog.

    Does anyone have any advice regarding diet to help with weight loss?


    #2
    Hi Poppy. Surprised your husband doesn’t have quicker access to a dietician via the medical team providing his care. Assume he doesn’t have swallowing difficulties. My dietician emphasises 3 important elements hydration, calories and protein. Have you searched the MNDA website for info? For example this might be helpful https://www.mndassociation.org/app/u...de-2020-V1.pdf
    Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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      #3
      I hate being the bearer of bad news but weight loss and muscle wastage are part and parcel of MND/ASL. It's like the tide. ☹️
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Hi Poppy, like John suggested you need to get referred ASAP to a nutritionist/ dietician in your husbands palliative care team.
        I was referred recently with a similar situation and a home visit was arranged for a week later.In the interim I was guided by the nutritionist to include full fat everything In my diet.
        After consultation I was prescribed supplements ( fortisips) to top up my diet and prevent weight loss.
        A swallow test was all so done .
        Best wishes
        Mary

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          #5
          Hi PoppyP. Does he like ice-cream? I have expensive tastes (hargen dazs) I put in microwave briefly to soften x

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            #6
            PoppyP A warm welcome to the forum, Poppy.

            I too advocate for an early appointment with a Dietitian, either through the MND Clinic or the local hospice/palliative care team.
            Losing muscle mass with ALS is inevitable, losing weight is not, but it is important to be assessed by a Dietitian asap to stem and reverse weight loss.

            Re his lack of appetite: sometimes this is due to difficulty chewing and swallowing, oral secretions, low mood, apathy, fatigue, chronic constipation, dehydration or side effects of medication.

            Perhaps eating smaller meals more often might be more appealing?

            Love Ellie.
            ​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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              #7
              Originally posted by John D View Post
              Hi Poppy. Surprised your husband doesn’t have quicker access to a dietician via the medical team providing his care. Assume he doesn’t have swallowing difficulties. My dietician emphasises 3 important elements hydration, calories and protein. Have you searched the MNDA website for info? For example this might be helpful https://www.mndassociation.org/app/u...de-2020-V1.pdf
              Fully agree with John’s advice. That book from the MNDA is really useful
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                #8
                Hi Poppy and welcome to the forum,

                I hope your husband gets to see a dietician soon or gets advice from his MND team. i am fortunate in that i can still eat normally but my appetite isn't great. In my case i think its because of lack of mobility. I eat smaller meals more often and enjoy food i would have restricted in the past .( chips, crisps butter etc )
                High protein and staying hydrated is recommended.

                I see a dietician at clinic and they check what I eat in a typical week. If anything I've put on weight since diagnosis and they want me to carry on. I
                would be outfaced by a big meal but my hubby , who is the cook, knows to give me a titchy portion and then he laughs if I ask for more.

                Love Debbie x

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                  #9
                  Welcome PoppyP I echo all the other replies. I feel I lost weight initially when waiting for confirmation of diagnosis...pure anxiety just destroyed my appetite.
                  However finding out more about MND (mainly on here) I realised I had to make myself eat...little and often...not always easy. I have snack type foods too on hand just to keep up calorie intake. Life saver for me cheese and eggs. So scrambled eggs for breafast...or Welsh Rarebit if I've got the energy to make.
                  I'm due to meet with a dietician from the Neuro rehab team to make sure I'm on track. Good luck👍
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                    #10
                    In a way, I wish I was losing weight! I've been a weight watcher for years, got to the goal weight I set, but completely failed to stay there! Especially as I really wanted to be 2 lbs less than that goal. Now i have maybe 10 lbs to lose to get there! Losing weight is certainly not happening to me!

                    I know that losing weight can be very distressing and I am not making light of your issues. Please forgive me for posting this self-oriented comment
                    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                      #11
                      Does he like milkshakes?.........loaded up with supplements of high protein and calories.

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                        #12
                        My body was a temple that I prayed in daily with squash (the game). I was a butcher's dog weighing 85Kg. The last time I was weighed in Salford, I tipped the scales at 60Kg. In the past 8 years even more muscle has gone and I am guessing approximately 55Kg.

                        I only eat two meals a day. I find I have enough calories and it is essential that I am hydrated for no. 2's.

                        Vitamin D and folic acid are my supplements.

                        Copyright Graham

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                          #13
                          Well I have been 17st and recently I hit 8st but I have levelled out around 10st. I love the washboard stomach it's the wrinkles I don't need. 😉😁😆😍xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            #14
                            Thanks everyone for advice continuing to chase dietician appointment in meantime reviewing website and trying more smaller meals often 👍

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                              #15
                              stephen insists he's not hungry. then i put a plate of food infront of him and he eats it all. if your husband can eat its finding things that he will still enjoy and perhaps something that smells like he wants to eat it. like the smell of bacon cooking!

                              stephen will say "im not really hungry" " i will just have a sandwich". so i have given him and sandwich and sat down to eat my dinner and funny enough i have ended up giving it to him. what if you ask him what he would like?

                              sometimes i think its the hassle of trying to feed himself and the fact that his arms ache and trying to catch the food on a spoon or fork. i like to see him still eating because its such a social thing to do. i dont mind feeing him if hes had enough with trying. he enjoys his food once he gets going.

                              he has gone through periods of not wanting his peg food and not wanting to eat. no food, no energy i say like a mantra. seems to work.

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