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Ernie


morgan617
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I got a short email from ernie! She has been in the hospital since Jan 13! She can not stand at all without fainting and the doctors are at their wits end.

They want to start some therapy, but have no idea where to start. She is, of course, about as deconditioned as you can get, having not been out of bed for over two months.

She asked if anyone knew of a program she could work on to please post it. Her therapists and doctors are willing to try anything.

I am relieved to hear from her, but really upset she is so sick. She did ask me to update people, so if anyone has ideas or anything that might help, she would really appreciate it....Thanks worriedmorgan

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Morgan,

Thanks so much for posting about Ernie. She has definitely been missed and I'm sad to hear that she is in the hospital!

Please take care Ernie and I hope the dr's can find some help for you,

Lisa

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Hi,

Thanks so much for posting this! I'm so sorry Ernie's been stuck in the hospital for so long. I hope they can figure out something to help. I also hope that her doctors are in contact with the specialists!!!!

Feel better soon, Ernie!!!

Lots of love,

Megan

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I am soo sorry to hear this about Ernie...I wish I had something to contribute to help her, but I'm sending my good wishes!

Jacquie

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Lois, chloe is sooo much better today! Thanks for asking.....what a stressor.....

Ernie does miss the site and everyone, I forgot to add that in my efforts to get some info for her. I have no ideas, as i pass out like a rock with just about any type of exercise.....

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Gosh, all I can think of is for them to get her hooked up with PT to work on building her core muscles while still in bed. A good PT should be able to help her at least get started building back her stamina--but if that's not at the bottom of the problem it may not be the solution she needs.

thinking of Ernie...

Nina

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Wow, I'm sorry to hear that she has been in the hospital for so long -- but at the same time relieved to at least have an update on her. Could her doctors try calling Dr. Grubb or Mayo to get some advice on how to treat her?? Are there any meds that she hasn't tried that they could administer in the hospital, or even IV fluids? I agree with Nina - if she can't stand for more than a couple of seconds it could well be something more than just deconditioning. Let Ernie know we're all thinking about her.

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yikes. and i thought my 5 & a half week stay was long. i agree with nina that in bed PT could theoretically help some with the deconditioning aspect - that's all i'm able to do these days too. though the objective is more to keep things from getting worse conditioning-wise; it is probably helping in gaining back a small bit after i literally wasn't out of bed for a month or so but it's not going to help in any great strides b/c deconditioning isn't at the core of the problem. and thus the conundrum that ernie seems to be in as well...

it seems like the canadian health system must have different criteria for keeping people hospitalized; i've been discharge many a time while bedridden (unable to get up at all); at my last discharge i was transported home via ambulance for this reason. not right or wrong, just sounds different. but i digress...

so glad to hear an update, even if not the best of news. thanks for posting morgan.

sending lots of good thoughts & prayers up north to ernie,

B) melissa

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Thanks for the update, Morgan.

Ernie I am so sorry to hear you have been in the hospital so LONG and hope somebody can help you out to address this situation for you.

Sending thoughts and prayers to you.

Sophia

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Guest tearose

Thank you for the news morgan, I am sorry to hear this news.

I can't imagine how hard it must be to have the doctors and PT's unsure what to do to make things better.

I hope someone helps your medical team soon Ernie!

please get well soon!

tearose

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just a P.S. regarding the PT issue. i know that we (my doctors, parents, & myself) generally have to have a real "heart to heart" so to speak with PT folks. they're often of the mentality that more is better which is NOT always the case. in hospitals they often want to come several times a day, etc. i've never been able to tolerate this (in recent years) and since autonomic dysfunction isn't something they see every day we have to really detail WHY...that it's not laziness, lack of motivation, etc. and that pushing too much can - in some situations - make things worse rather than better. most want to learn/listen but there are some who don't seem to be able to "get" why PT twice a day every day isn't always better than a few times a week, once a day, etc.

for me i do some "PT-type-stuff" so to speak when i'm able but it was decided that regular home PT/OT sessions (after trying them a few months back) was counterproductive. as one OT put it, day to day living stuff(i.e. putting on clothes that someone else has gotten out for me) - when i'm able - and medical maintenance stuff may be all i can handle.

just thought i'd throw out this issue to give a heads up based on my experiences with PT (in the hospital, via home PT, & outpatient over the years).

B) melissa

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Great advice Melissa!

Thank you so much Morgan... I am SOOOOOOOO Relieved!!! I have thought of Ernie several times a day lately... been getting more and more worried....

Not that her situation isn't worrying... but I'd rather know what's going on than be in the dark.

Poor thing... give her our love and let her know she's missed. I do think the health care in Canada is quite different... but maybe Melissa's input will be helpful.

Tell her I'm praying for her.

~Melanie

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i understand what you mean melissa! my pt wanted me to stop exercising as she thought (and i knew) that it was unwarranted as it made me more sick. my daily "moving" like walking to the kitchen making coffee or go out (if possible) to buy the bread (or some nice plants for my garden!!!) is my exercise.

ernie,

i am so sorry to hear you are in the hospital for so long. if you would like, please send me your telephonenumber, i would be more than happy to call you and keep people updated. i have been very worried about you and have been writing you. you can email me at my new address via ppforum (i haven't been able to use my old address as i don't have access to that computer since months now, because of the rebuilding). wishing you all the best and sending lots of healing your way,

love,

corina :lol:

oh and thanks morgan for updating us!!!

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morgan thanks for the update!

Ernie Im so sorry that you are in the hospital and have been in so long...your certainly are a rare bird!! :lol:.. I do hope tht your doctors can help you get back to baseline and get down to the nitty gritty of waht is going on with you.. can they by chance contact any of your doctors that you have seen here in the states? Like maybe dr. goldstein or something?

big hugs hoping that you feel better soon ernie

love

linda

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Thank you for updating us, Morgan. It is good to know what is going on.

Dear Ernie, I'm so sorry that you've been through such a terrible 2 months. I've been thinking about you. You have certainly been missed here. I'll keep you in my prayers. I hope the doctors can find a knowledgeable PT who is willing to work with you.

Big hugs,

Rachel

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Thanks for the update Morgan, I was so worried about You Ernie.

How about some PT in a pool?---------of course with high supervision by the PT. I'm wondering if the gravity is taken away it would be easier to recondition?

Ernie, you are in my prayers for healing and strength. I hope each day brings you more strength.

Sending you a BIG HUG.

Maxine :0) happypinkpanther.jpg

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I am sure ernie will appreciate all the love. I believe she had to use a hospital computer to email me. I'm not sure they have laptop connections there. Or she would have been keeping in touch. I emailed her back right away, but as there was no address, I'm not sure she's getting the emails being sent. She just said she was emailing from there and had to go back to her room, she was in a reclined bed/chair.

I will email her everyone's good thoughts and wishes and see if she can send a phone number so she can at least talk to people who can call.

Melissa, you are so right! My son is in P.T. and the doctor said, if it makes you hurt more or makes you sicker, it is too much. P.T. should never make you feel worse. He said that "the more is better" thought is a great misconception among many doctors and therapists.

I have no idea what they do in Canada. She said the doctor wants to put her in a nursing home, but she refused flat out. So now she is just trying to get home. I'm certain she is very frightened....if I get anymore info I will send it straight away.

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I agree with all your thoughts about the PT Melissa- that has also been my experience with hospital PT and home PT. I also focus on just doing any ADL's that I can manage. I wear a pedometer and count my steps- it really gives my perscpective of how the day has been. If I can get beyond a few hundred steps- it's a great day!! That is usually bathroom trips. :blink:

As far as the pool idea----- I may be wrong, but it doesn't sound like Ernie is a candidate. That was a PT order for me and they wouldn't do it. I was too high risk and they could not do one on one with therapist. There would be like 4 people in the pool.

I was able to sit or stand a few minutes, it doesn't sound like Ernie is at that point. I did have some PT where they would just do simple things like arm and foot exercises for circulation, just very simple movements to whatever I could tolerate. Didn't get out of bed.

Will keep praying for you Ernie-

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True Nadine,

She would need more then one therapist in a pool, and that just doesn't sound like it could be done, not to mention she can't even sit up.

Morgan-------thanks so much for the updates, plese let us know if you get a phone number where we can reach her if you can.

Maxine :0)

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