A Doctor's Wake-Up Call on "Awareness" Day

[Min]

This isn't care, it's institutionalised abuse that the Nazis would have been proud of.

You can't even have a member of staff to push your wheelchair! I'm so very sorry you are experiencing this living hell on top of your debilitating illness.

When did doctors stop believing that physical illnesses which have no current diagnostic tests are real?

hang in there Dr Yes

 

[Robin]

Perhaps we could fundraise to hire an advocate? A good social worker could help Dr. Y (or should I say King Yes of Castle Nursing Home? /eyeroll) but apparently the one on staff at the nursing home hasn't been helpful. I'm unsure what profession such an advocate would have -- attorney? public health professional? physician? Would anyone have any ideas?

 

[JT1024]

Does anyone know if Dr. Yes is from Long Island? Does he have any family close to where he lives?

Just trying to think of factors when finding a nursing home...

 

[leelaplay]

Calling all people with knowledge of the NY area health system and nursing homes

The problem is that Dr. Yes needs an advocate. Getting his story out to the media at this point has a HUGE potential of backfiring and making his living conditions and treatment by doctors exponentially worse. Sure the Daily News might run something like this, but aside from consciousness raising, how is this going to help him immediately and directly?

What he needs is someone who can navigate the NY system and help him find alternative housing (a better nursing home?). Aside from the mistreatment by his doctors, his severe allergies are aggravated at this location in Long Island. Additionally, the food is of poor quality and of insufficient quantity. He has lost substantial weight since he has lived here and is continuing to lose more weight.

Though he can currently walk a few steps, he would not be capable of independant living without ample home health care. Whatever number of home care hours insurance would cover would not be enough to help him with ADLs. Although independant living sounds like an appealing solution, the likelihood is that home health aides won't always show up when they are supposed to and Dr. Yes will be left alone, hungry, and without any help at all.

We have a collective wisdom here that can perhaps be put to use.

What is the best nursing home in the New York City area? How should we define "best?" What criteria would we use? Does it matter whether it's garden style or a high rise? Close to the urban area or farther out? I know there are government ratings for nursing homes, but I don't know if they are helpful.

In general, what personal experiences have people had with nursing homes--especially in the New York City area?

Advocate

I'm so glad to see the outpouring of care for Dr Yes, and how so many want to help.

I can only reiterate that I think we have to be very careful. We don't want to do anything that will bring harm to Dr Yes; We do want solutions that lead to a fairly quick improvement in his situation.

Does anyone know:

• how to find a competent medical advocate in the NY area?

• any contacts with the local ME/CFS groups who can help?

• any effective people within the medical system who will only make things better for him and not worse

• anything about any alternative living situations for Dr Yes - negative info being as important as positive

 

[_Kim_]

I IM'd briefly with Doc last night but he was IMing someone else at the time. I skyped him a link to this thread a little while ago but he's not online right now.

Dr Yes, you are loved.

Let me say that again:

Dr. Yes, you are loved!!

maybe one more time:

Dr. Yes, you are loved!!

I want to point out that Dr. Yes posted his story for us. I truly hope some help comes out of his telling it, but the intention was to offer evidence that this kind of mistreatment is happening to someone with ME/CFS on International Awareness day in New York, USA in 2010. Here. Now. This kind of mistreatment is happening.

Can we help Dr. Yes find a better home? I'm hopeful that we can do this. But what about the next Dr. Yes? This isn't an isolated case, with one isolated jerkoff doctor who doesn't believe in ME/CFS. This is happening elsewhere. And soon may be happening more. Many in our population are being cared for by elderly parents. Where will they go when their parents are too old or ill to care for them?

 

[outofstep]

God's Love We Deliver

Maybe they could help out Dr. Yes when he's outside.

http://www.glwd.org/about_services.html

They deliver food 2x/weekday to people who are seriously ill in NYC area. They also do client advocacy and referrals for housing etc.

They began as an AIDS charity: http://www.glwd.org/about_history.html

 

[_Kim_]

Does anyone know if Dr. Yes is from Long Island? Does he have any family close to where he lives?

Just trying to think of factors when finding a nursing home...

SPWC seeks bed in NY nursing home. Must be within one hour from Manhattan (or better yet, in Manhattan). Urban area preferred. Private room essential (allergies). Good and abundant food a must.

 

[rebecca1995]

SPWC seeks bed in NY nursing home. Must be within one hour from Manhattan (or better yet, in Manhattan). Urban area preferred. Private room essential (allergies). Good and abundant food a must.

Excellent summary, Kim. To this I would add:

-Nursing home must have good HVAC system, essential for people with allergies
-Must provide aides to push residents' wheelchairs, or at least make an exception in special cases

Dr. Yes wrote that his nursing home won't get people to push his manual wheelchair outside. Wouldn't it be great if he could have an electric wheelchair, then? But insurance companies won't pay for power chairs for people in nursing hiomes. Why? Because they assume that wheelchair assistance is being provided! It's another one of those crazy Catch-22s that seem to define the lives of PWME!

Keep the faith, Dr. Y.

 

[jackie]

Just one of many ideas to throw into this brain-storming mix.....IF we can't relocate him (and he MUST stay in that hell-hole indefinitely) can we "fund-raise" for assistive devices to make his life easier? (of course we have to determine - with his help - what those would be) What about a "hoveround" chair-thingy (the tv commercial shows that they train you in using them)...don't know the details but could easily find out. Also...need to know the "rules" at the hell-hole about bringing in "outside" gadgets etc. - maybe a true electric wheelchair would be better...just some crazy ideas....to help our most "humane" of friends...feel human! j


(Jerry...I may be in the "State of Confusion"...but I thought you said you LIKED that excessive flagellation? oh - that wasn't YOU, that said that?)

 

[Andrew]

Reality has a way of being very ironic about the times it chooses to bite you in your privates. Today, on International ME/CFS Awareness Day, I was woken up after four hours of sleep by one of the nursing home doctors who I had been trying to reach for two weeks...

This is horrible. I am so angry I can hardly type.

Some States have an ombudsman group that helps people in nursing homes who are being mistreated. A problem you will face it that the ombudsman group might be anti-CFS too. I guess if I were to try to present my case to a third party, I would not get stuck in the details. The CDC says it's a physical illness. You have citations from journals backing up with the CDC says. The doctor refuses to respond to a legitimate illness that is recognized by the CDC and supported by research. This is abandonment of patient. And if they don't like something that is Canadian, there is also the New Jersey manual.

 

[dannybex]

Thanks Dr. Donnica for your advice. The problem is that Dr. Yes needs an advocate. Getting his story out to the media at this point has a HUGE potential of backfiring and making his living conditions and treatment by doctors exponentially worse. Sure the Daily News might run something like this, but aside from consciousness raising, how is this going to help him immediately and directly?

What he needs is someone who can navigate the NY system and help him find alternative housing (a better nursing home?). Aside from the mistreatment by his doctors, his severe allergies are aggravated at this location in Long Island. Additionally, the food is of poor quality and of insufficient quantity. He has lost substantial weight since he has lived here and is continuing to lose more weight.

Though he can currently walk a few steps, he would not be capable of independant living without ample home health care. Whatever number of home care hours insurance would cover would not be enough to help him with ADLs. Although independant living sounds like an appealing solution, the likelihood is that home health aides won't always show up when they are supposed to and Dr. Yes will be left alone, hungry, and without any help at all.

I very much agree in general, but Dr. Moore did offer to help him find other media connections, as long as she can get his name, number, and contact info -- and those connections could possibly help really protect him, and might have other resources/connections to advocacy options.

But you're right -- he needs some sort of advocate ASAP to help him put all these things together -- and watch out for him at the same time.

Isn't there a way the moderators or Cort could send him an email? I'm sure he's completely drained after writing out his story (and just going through that hell!), but I'm very concerned if he's okay...

 

[Gerwyn]

I very much agree in general, but Dr. Moore did offer to help him find other media connections, as long as she can get his name, number, and contact info -- and those connections could possibly help really protect him, and might have other resources/connections to advocacy options.

But you're right -- he needs some sort of advocate ASAP to help him put all these things together -- and watch out for him at the same time.

Isn't there a way the moderators or Cort could send him an email? I'm sure he's completely drained after writing out his story (and just going through that hell!), but I'm very concerned if he's okay...

This is why i get so angry at people repeating psychobabble.This is the result a bigotted uninformed doctor who has been brainwashed by the psycho lobby and a defenceless sufferer of our illness being abused as a result

 

[Orla]

Dannybex
Isn't there a way the moderators or Cort could send him an email? I'm sure he's completely drained after writing out his story (and just going through that hell!), but I'm very concerned if he's okay...

Danny, I would say better not as he might be getting overwhelmed with messages he might never be able to reply to (though I am the pot calling the kettle black here as I PM'd him myself) . I got a message from him this morning. He is wrecked from sleep deprivation so might not be able to respond here for a while.

Gerwyn
This is why i get so angry at people repeating psychobabble.This is the result a bigotted uninformed doctor who has been brainwashed by the psycho lobby and a defenceless sufferer of our illness being abused as a result

Yes, me too Gerwyn. One of the main reasons I do some work around awareness (as much as I can) is that I want to get out there that this is a physical organic medical condition, and that research has shown this to be so.

Edit: Sorry, I didn't really mean to put people off sending him messages, it is not up to me. I just meant that if people do he might not be able to respond, or respond for a while.

Orla

 

[_Kim_]

I'm sure he's completely drained after writing out his story (and just going through that hell!), but I'm very concerned if he's okay...

He's okay. Wiped out, but okay.

 

[sunlady]

Have been watching PR for a while now but have felt too unwell to post before.

Can someone contact Marly Silverman of PANDORA ? She is a great advocate for sufferers of ME. If anyone can help she can.

 

[leelaplay]

Have been watching PR for a while now but have felt too unwell to post before.

Can someone contact Marly Silverman of PANDORA ? She is a great advocate for sufferers of ME. If anyone can help she can.

thanks for the idea sunlady. Welcome to the forum.

I just emailed Marly, but think she's on holiday. If anyone has a personal relationship with her, or with any advocate experienced in the NY area, could you please write as well? thx if / sb

 

[Dreambirdie]

Hi Sunlady-- I emailed Pandora a note, with a link to this thread. Hopefully they will be in touch. Thanks for the good idea.

ETA: Hey IF great minds think alike!

 

[Melodie]

Quote "jackie

Just one of many ideas to throw into this brain-storming mix.....IF we can't relocate him (and he MUST stay in that hell-hole indefinitely) can we "fund-raise" for assistive devices to make his life easier? (of course we have to determine - with his help - what those would be) What about a "hoveround" chair-thingy (the tv commercial shows that they train you in using them)...don't know the details but could easily find out. Also...need to know the "rules" at the hell-hole about bringing in "outside" gadgets etc. - maybe a true electric wheelchair would be better...just some crazy ideas....to help our most "humane" of friends...feel human! j"

If the Doc wants an electric wheelchair and it is do-able I think it's a great idea to fund raise for it.

 

[Robin]

I don't think Dr. Y would mind if I shared that I just spoke to him and he's OK. He's going to respond when he feels a little better; he's just really tired. He has read the thread though and all of the good thoughts and love cheered him up!

 

[flybro]

Hey Doc,

LUBS YA LOADS
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LUBS YA
LUBS YA
LUBS YA
LUBS YA
LUBS YA
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