Hi, I now realise that I should have joined this forum a long time ago but like a lot of us with MND I was in denial for a long time.
I was diagnosed with Progressive Bulbar Palsy MND in January 2019 with speech and swallowing difficulties at the time. Although my MND has progressed, speech and swallowing wise, I feel lucky that I’m still physically ok and active.
The main reason I’ve now joined the forum is to share a positive experience with other MND suffers and their families as I have now had a RIG feeding tube fitted. Like most of us, I kept getting advice to think about having a feeding tube fitted but I really didn’t want it. However, despite my reluctance, I had a RIG tube inserted in January 2020 and it’s the best decision I could have made. I’ve easily adapted to overnight feeding, put weight back on and feel so much better. Therefore I would strongly recommend to people with swallowing difficulties to have a RIG or PEG feeding tube. During the year January 2019 to January 2020 I lost over a stone in weight due to difficulty in eating food despite all the adaptions my wife had made and I was only about 10.5 stone before the loss.
I was extremely anxious when I had the feeding tube fitted but it's so much easier to manage than I ever thought it would be.
Although the professionals always suggest you consider having a feeding tube they also always say “but it's your choice” I’m not knocking the professional because that’s what they have to say but I do think they should be more persuasive or give more accurate information.
What convinced me, last October, was when my MND medical trial doctor explained, in no uncertain terms, that it's really not good to lose weight and that it’s best to have the RIG procedure done whilst you are relatively well as you stand more chance of recovering well, possibly gaining weight and surviving longer. She convinced me and I went for it, as I said above I’ve put weight back on (over half a stone) feel fitter, stronger and it’s taken away all the stress of trying to eat, drink and taking medication. I can still drink thickened tea and the calorie drinks, with a lot of concentration, but I don’t have any normal food anymore.
If you have any questions please ask, but my advise is don’t put it off.
I was diagnosed with Progressive Bulbar Palsy MND in January 2019 with speech and swallowing difficulties at the time. Although my MND has progressed, speech and swallowing wise, I feel lucky that I’m still physically ok and active.
The main reason I’ve now joined the forum is to share a positive experience with other MND suffers and their families as I have now had a RIG feeding tube fitted. Like most of us, I kept getting advice to think about having a feeding tube fitted but I really didn’t want it. However, despite my reluctance, I had a RIG tube inserted in January 2020 and it’s the best decision I could have made. I’ve easily adapted to overnight feeding, put weight back on and feel so much better. Therefore I would strongly recommend to people with swallowing difficulties to have a RIG or PEG feeding tube. During the year January 2019 to January 2020 I lost over a stone in weight due to difficulty in eating food despite all the adaptions my wife had made and I was only about 10.5 stone before the loss.
I was extremely anxious when I had the feeding tube fitted but it's so much easier to manage than I ever thought it would be.
Although the professionals always suggest you consider having a feeding tube they also always say “but it's your choice” I’m not knocking the professional because that’s what they have to say but I do think they should be more persuasive or give more accurate information.
What convinced me, last October, was when my MND medical trial doctor explained, in no uncertain terms, that it's really not good to lose weight and that it’s best to have the RIG procedure done whilst you are relatively well as you stand more chance of recovering well, possibly gaining weight and surviving longer. She convinced me and I went for it, as I said above I’ve put weight back on (over half a stone) feel fitter, stronger and it’s taken away all the stress of trying to eat, drink and taking medication. I can still drink thickened tea and the calorie drinks, with a lot of concentration, but I don’t have any normal food anymore.
If you have any questions please ask, but my advise is don’t put it off.
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