Old 06-03-2015, 09:25 AM #1 (permalink)
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Default 2nd clinic visit

well i go for 2nd clinic visit tomorrow,i don't really have any expectations as i realize they are just a team of observers . seems so pathetic. we just wait one day at a time for what is to come. but really everyone is terminal. love and light chally
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Old 06-03-2015, 10:36 AM #2 (permalink)
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Default Re: 2nd clinic visit

Hi Chally,
I hope there is some benefit to the trip for you. Not sure how far you need to travel, that can be very tiring before you even get started.
All the best, you are in my prayers.
God bless, Janelle x
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Old 06-03-2015, 11:03 AM #3 (permalink)
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Default Re: 2nd clinic visit

>,i don't really have any expectations as i realize they are just a team of observers . seems so pathetic

Ditto that!
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Old 06-03-2015, 11:53 AM #4 (permalink)
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Default Re: 2nd clinic visit

Hope you gain something from it Chally. I'm not sure I'm going to go back. When I need prescriptions for medical devices I'll call or go see them for the appropriate evaluation but I think that's about it. I can think of a million better ways to spend my day.

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Old 06-03-2015, 01:14 PM #5 (permalink)
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Default Re: 2nd clinic visit

While they are just observers, they can recommend ways to make what ever time left somewhat easier. I know it's not much but it is something.
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Old 06-03-2015, 05:12 PM #6 (permalink)
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Default Re: 2nd clinic visit

Chally, make sure that you plan for equipment with them. We made that mistake and needed to have Grumpy stay at respite while we waited on a hospital bed and lift.

~ Kaye
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Old 06-05-2015, 07:04 PM #7 (permalink)
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Default Re: 2nd clinic visit

just back from clinic visit. for me keeping expectations down is the key to feeling like something actually happened. it was a good visit especially w/ the Dr. as i ask him many questions that i garnished from this site about the tech part of this disease e.g. where does mine originate ( primary (brain) --secondary (spine). spine for me hence the lose of hands arms and legs at the present. did get better re pore going with the "team" then last time. all in all a better visit and a total family sigh of relief for now. thanks for you thoughts chally
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Old 06-05-2015, 09:07 PM #8 (permalink)
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Default Re: 2nd clinic visit

Glad it was productive for you Chally! Lots of Pals are going to clinic right now.
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Old 06-06-2015, 12:29 AM #9 (permalink)
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Default Re: 2nd clinic visit

1st clinics can be so overwhelming--nice to hear at this 2nd one you got some important questions answered and are getting to know your team and, especially, they are getting to know you. That can be a big help when you need equipment or follow up. (Always helps to be able to put the face with the name.)
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Old 06-09-2015, 05:30 AM #10 (permalink)
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Default Re: 2nd clinic visit

I think the whole thing with the clinics is to realize where they are coming from. For them the have excepted the idea that there is no cure for us so it is only about observation and trying to assist with symptoms. They can help with the symptoms. They can also scare us, by pushing us into equipment that mentally we are not yet ready to deal with. Thankfully due to this board we get more ready and understand things better before going. And then have a place to discuss there recommendations.
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Old 06-09-2015, 08:33 AM #11 (permalink)
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Default Re: 2nd clinic visit

Well said Pete. Most of the clinics are staffed by good people doing their best to help us get through our journey. they certainly could have picked higher paying and less heartbreaking specialties. They are doing their job when they urge ( scare?) us to have a feeding tube or bipap or mobility aid. Some of us have seen consequences of poor choices in our lives and among our online friends. They see them every clinic. I think sometimes they must long to say I told you so!

I think they have to take the long view working for an eventual cure or treatment or they would despair.
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Old 06-09-2015, 10:34 AM #12 (permalink)
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Default Re: 2nd clinic visit

As yet, I don't do clinics, don't even know if we have them, only appointments with 4 different doctors whilst they try and figure me out (Wayne reckons after 18 years he still hasn't figured me out, so doesn't know how the doctors will manage!). I always try to be as polite and friendly as I can, and still apologise for tears, because I know their job must be difficult, wouldn't have many patients they can offer that magic pill to.
So I agree with Nikki...well said, Pete.
God bless, Janelle x
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