Comments Received
Dawn and Andrew - 14 Nov 2017
Hello! just wanted to thank you for your website, I am so sorry about Alex but what a lovely thing you have done to help others in his memory!! So happy to have found you and know it will help us!!
My son is 20 and has Down’s Syndrome and autism. He has lots of issues but GI issue, I believe, is most difficult to handle. He is non verbal so it has been such a hard thing to find his problems.
He had a swallow test, tests to find out if it was Crohn’s as he had some signs that it could have been Crohn’s and on and on. He has terrible heart burn, and just recently had his gallbladder out and appendix. The one test that is positive was the swallow test. The pudding form of food would not go all the way down without sips of sprite so now sadly he has to have all pureed and liquid diet and needs to take sips of sprite during meals to make that go down!
So thank you again for your great website! I only wish my son could feel better after being on this diet for maybe a month. The burping gas, etc just is so very hard on him I know although I cannot ask him where etc it hurts. I just don’t know how to help him.
God Bless you, and thank you so much, you are an angel!!
Thanks
Member of discussion forum on Oesophageal Achalasia and Spasm on www.patient.co.uk - 29 January 2015
Great site, thank you.
Brad – 26 May 2016
Alex was so blessed to have you look after him. Thanks for sharing your story and the tips and tricks too for coping with Dysphagia. Good advice from caring people such as yourself is invaluable.
Thanks
Member of discussion forum on Oesophageal Achalasia and Spasm on www.patient.co.uk - 29 January 2015
Great site, thank you.
Sarev from USA – 20 June 2014
Anna, I can't thank you enough. My speech and language therapist gave me suggestions, but your booklet has more details and practical information. Alex's technique for swallowing is just what I had figured out on my own, but didn't know if there was a better method. My condition developed suddenly, so I have been rather panicked and disheartened, and this was reassuring. My condition affects swallowing liquids only, and I have no other medical problems of any significance. I am active in the community and my condition is largely invisible. The reason I am telling you this is that in addition to the medical issue, I am trying to figure out how to cope in a social context. Obviously my burden is much lighter than Alex's. However, I am trying to avoid calling attention to my swallowing, especially since when other people see me having difficulty they comment, and that makes me more anxious, and makes it worse, as you understand.
NOTE
Since this lady is from the USA, she was unsure about donating to a UK charity for the guide. So it was agreed a donation would go to one of her local charities, ""FOOD for Lane County”. This is an email from them. “I am emailing you to let you know that Sarev has made a generous donation to FOOD for Lane County in honor of Alex and your courage and caring. Thank you for inspiring this gift that will help us provide emergency food boxes to over 68,000 residents throughout Lane County."
Specialist working in dysphagia rehabilitation – 5 September 2013
This website is an excellent resource with some fantastic ideas for families and patients to manage (and enjoy) food & drink despite the limitations and risks of dysphagia. It is a lovely tribute to your husband. It sounds as though you made every effort to help him continue to enjoy his eating and drinking, with both his pleasure and safety as your priority.
Anonymous - 2 May 2013
I have just read through the whole of your article which is a real pearl of wisdom and above all caring.
It is beautifully written (and I love the humour in the pictures) and so very informative. You have put a lot of effort into it.
I am sure it will be a source of help and comfort to many people and I will be trying some of the recipes myself, they sound lovely.
Many years ago when I was in my late twenties I suffered a problem where I could not swallow. I would chew food that rolled around in my mouth for ages and I could not get it down, and on many occasions had to spit it out or, physically hold my throat and shut my eyes tight to endure the swallowing process. Fortunately not as severe as what Alex had to endure but still very distressing and embarrassing when I ate out – and I am a person who loves my food!
Mine turned out to be nerves and a stress thing; I was going through several traumas at that time, and the severity of the swallowing problem got much less and eventually went away of its own accord. But still today, every now and again, I will get it, in that I am nervous at swallowing what is in my mouth, even water. Very strange!
I will pass on the information whenever I think it appropriate to be of help to others.