Author Topic: Help please  (Read 731 times)

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Offline Raemermaid

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Help please
« on: May 24, 2017, 12:56:02 PM »
I have just recently been diagnosed with EDS after almost 15 years of symptoms. I'm starting physical therapy soon and have many doctors appointments ahead but I also don't believe a service dog to be a last resort. I wondering how and when you knew it was time to start the process? I think it would be better to start sooner rather than later so that I have a service dog with the ability to assist me as my symptoms progress. Every year for the last 8 it has gotten worse and worse. I was also wondering how you got family on board if you had to.

Offline EverConfused

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Re: Help please
« Reply #1 on: May 24, 2017, 04:41:41 PM »
not immediately or shortly after diagnosis.
not before embarking on appropriate treatment.

you've been in decline for the last 8 years, but you also weren't getting treatment that is specific to your condition. it's not unheard of for people to get treatment aimed at managing symptoms that turns out to be unhelpful or even harmful once an underlying cause is determined.

the next 8 years will not necessarily look like the last 8.

at a minimum, you really ought to have your doctors appointments, do your physical therapy, learn about your condition, and give the dust a bit of time to settle. then you can talk to your treatment team about whether or not your are disabled (now, not potentially in the future) and how to move forward if you are. that's a discussion that might be about service dogs, but also many other strategies depending on your needs.
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Offline ccunnin3

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Re: Help please
« Reply #2 on: May 24, 2017, 04:44:56 PM »
I would not start trying to get a service dog until I knew what tasks I woukd need (at the very earliest). You are so early in treatment, how do you know what you won't be able to do? How do you even know what you will need the dog for?

Yes, you have been ill for a long time but proper treatment can mitigate or even completely aliviate symptoms.
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Offline Ariel

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Re: Help please
« Reply #3 on: May 24, 2017, 06:26:58 PM »
Just echoing EverConfused and Ccunnin3, until you are in treatment long enough to reach relative stasis, you likely won't be able to derive much benefit from a service dog. It takes roughly 2 years to owner train a service dog if all goes absolutely ideally (most OTers wash out at least 1-2 dogs prior to successfully owner training a SD) and typically 1-2 years to receive a fully trained service dog from a program post application acceptance. 2 years is a long time in the scheme of treatment if you've had none so far.

Once you have been treated for quite some time you may find that your symptoms are no longer disabling with treatment, or you may find you've been helped some but your doctors still think you're disabled and experiencing major deficits in ability to perform daily functions. If you are found to be disabled while still in treatment at some point in the future, at that point you'd think about what you cannot do for yourself safely, easily, or at all, and how a dog could be trained to assist you with those functions. I'd focus your energy on researching and trialing treatment options though, given how premature (and possibly ultimately unnecessary) service dog exploration is given your present situation.
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Offline Raemermaid

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Re: Help please
« Reply #4 on: May 25, 2017, 10:24:19 AM »
I'm sorry I wasn't feeling well yesterday and just reread what i wrote without and realized that it didn't say anything about treatment. The only new treatment I will be receiving is physical therapy. I've been in treatment for every other symptom I've had since I began having the symptoms. I am hoping that the physical therapy helps with the overall joint pain I'm expeirencing however, the damaged beyond that is very severe and has not responded to treatment. I just wanted to clarify that the only reason I am asking now is because they have found the cause of the problems I have been having and understand that there is no treatment or cure for it. I fully intend of continuing treatment and adding the physical therapy in but as far as my symptoms that aren't joint pain, they are permanent as I have been told by my doctor.

Offline Suse

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Re: Help please
« Reply #5 on: May 25, 2017, 09:09:12 PM »
I have no clue what EDS is.

Offline EverConfused

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Re: Help please
« Reply #6 on: May 25, 2017, 09:35:17 PM »
It's a group of heritable connective tissue diseases.

or more than one person called ed.  :laugh:
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Offline Kirsten

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Re: Help please
« Reply #7 on: May 26, 2017, 02:29:33 AM »
or more than one person called ed.  :laugh:

Ever, you're naughty!  I needed the chuckle.  Thanks.  :wink:
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