tag:blogger.com,1999:blog-3790510248331911332.post8563736204994644914..comments2023-07-27T02:11:02.416-07:00Comments on Sarah Ezekiel: How Some Health Professionals Continue to Fail UK MND SufferersSarah Ezekielhttp://www.blogger.com/profile/08263830318167443946noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3790510248331911332.post-47510620691901851502009-09-11T01:27:13.433-07:002009-09-11T01:27:13.433-07:00hi Sarah, i can only echo the above sentiments (re...hi Sarah, i can only echo the above sentiments (re social services) and remind you again of how much of an inspiration you are to so many people. Your comments on those experiences made me frustrated. I couldn't belive the insensitivity of that nurse. We were incredibly lucky (i have come to realise) when we were caring for dad, his GP was extraordinary and did everything he could to get us as much help as possible - even phoning social services on several occasions when we were banging our heads against the wall of bureaucracy. <br />Re the lightwriter - i can only relate the fact that dad struggled immensely with his. He found it cumbersome and frequently got frustrated with it to the extent that he ended up preferring to sit and watch tv rather than have to try to communicate using it. His MND nurse (another fantastic individual) helped him programme a few bits in but it was really not the answer to his problems. His frustration with it increased as his dexterity decreased and he found typing to be really tough. It was further compounded by frontal lobe dementia (which i believe is often seen in people with bulbar palsy) which meant the process of even thinking through how to spell the word was enough to send him a bit nuts! He tried with it and doubtless it did sort of help on occassion but i think you're right to say that so much more ought to be being done. seeing him shut down because commnuication became impossible was one of the saddest parts of looking after a man who had once been so gregarious.<br />much love to you as always sarah, xxsarahnoreply@blogger.comtag:blogger.com,1999:blog-3790510248331911332.post-56378318448223025622009-09-10T14:04:35.089-07:002009-09-10T14:04:35.089-07:00It is great that you are doing this blog and reach...It is great that you are doing this blog and reaching so many people!<br /><br />I am appalled that basic needs such as the provision of adequate communication and bathing equipment are not being met but with your help, I am sure that this will change - it's just a shame that everything is a fight... and I remain disgusted that your case with Social Services is still closed.<br /><br />There is only one thing to do and that is to carry on and fight the good fight my lovely Sarah..... xxxShireennoreply@blogger.comtag:blogger.com,1999:blog-3790510248331911332.post-29633513745992572962009-09-10T14:04:05.858-07:002009-09-10T14:04:05.858-07:00It worked! It worked! It WAS my bad after all.
Ok...It worked! It worked! It WAS my bad after all.<br />Okay, here goes the comment again:<br /><br />I am so sorry that the children's services case is still closed...it's ridiculously unfair, as are all the experiences of MND families that you've shared. I'm wondering if there's a sympathetic professional and/or academic who you may be able to partner with on this...perhaps for establishing protocol, or training purposes, or tightening policy and accountability, and politician(s) who may assist as well...I'm thinking of the model of my local (Ontario, Canada) social services agencies to assist abused women and women in need: the work they have done to make changes has required a great deal of time, and people in positions of influence, to accomplish their goals. As wonderful as you are, I worry that this is systemic, and if so, requires some infrastructural tweaking. Organizations tend to be mountains when it comes to moving them even an inch!<br />Still, everything you do is phenomenal and extremely valuable - and, I'm sure, very much appreciated by the families. My very best wishes to you, as always!<br />Mary Jo Winkler-Callighen/"Gran"Unknownhttps://www.blogger.com/profile/10290653154620699600noreply@blogger.comtag:blogger.com,1999:blog-3790510248331911332.post-36038163356575862482009-09-09T12:36:08.642-07:002009-09-09T12:36:08.642-07:00This post makes me feel so helpless. People should...This post makes me feel so helpless. People should do their utmost to help pALS, not be so indifferent. Have you read the book from Joss and Rosemary Acland? I think it was "my better half and me". She seemed to get much more help with when she had MND. <br />Thank you for your battle and for being so assertive.<br />Love and greetings LianneLianneGoeshttps://www.blogger.com/profile/06393211359104762789noreply@blogger.com