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hope returned



I was wrong about the sweet little girl. She rang back late afternoon and said she had given it all some thought and she will try to get the modified Barium swallow as soon as possible and maybe send a dietician to go over the foods we eat and make recommendation. That is a new approach so I hope it can work.

Thanks Bonnie. In your reply to my last post you talked about "pride" and that is what it is with Ray!! He does put on a good front with his doctor and some times others not realising that it is a hindrance to the medical profession if the patient denies the symptoms. And I guess it doesn't really matter if they think I over-react sometimes, because I do. Panic would be closer to the truth, that is never far from the surface as he has had multiple strokes, falls etc and I am so aware of danger just around the corner.


I've never heard lack of treatment called "parking lot syndrome" but it is a very sensible term. WE have a saying here: "hospitals get rid of their waiting lists by keeping people waiting so long they die." and it is true. Just keep putting off the operation or the treatment and the patient will eventually give up trying to get help. It is a cruel and pragmatic way to keep the budget down and one I fight as much as I can. I have no intention of letting Ray die and am out to get the best possible treatment for him.


I am not ready to put him on soft food and thickened liquids but if that is the way to go then I will have to be ready. It is "pride" for me too. I want him to be "normal", to be able to go out to dinner and sit up to table like all the others, to have a soft drink or eat a barbecue (cut into tiny pieces) but a soft diet will make that more difficult. But this, like all the other things we ave coped with so far, will also be "doable" in the end.


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Yes Sue, great attitude.... it is all "doable" in the end, the passage of time is a great friend of us survivors.


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Sue there is a new little "gadget" on the market it is called the "Magic Bullet" it is a small food processor, very compact ...I think Wal Mart sells them now also, Would this be a possibility for you to Puree some of Rays foods. it is electic and actually small enough to be portable.

Yes I know "pride" and try harder when others are around, but am learning to let some of the "new" me out.. and to be honest with my doctor, (but he actually) knew the "old me" so don't fool him too well.

I always say if someone is ill, they really do need a patient advocate to "fight" for them and Ray has an excellent one!!

(and most caregivers on this site!!) my hats off to you all and dozens of roses..Bonnie

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