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By billo On 2009.01.19 02:07
I should have looked for a forum like this a long time ago I know but I didn't think it would really help and didn't actually realize I needed to.
I have been living with a woman who has PD for almost nine years now. She also smoked cigarettes for years but quit last summer after being admitted to the hospital and they diagnosed COPD. She hasn't smoked since then.
New Year's eve morning she awoke me complaining that she was having trouble breathing. I took her to the emergency room here and she collapsed in the ER floor as soon as we walked in. She had stopped breathing. They took her into the back and put her on a ventilator. She remained there until January 8th. She came home that day and was admitted to hospice care.
The reasons I'm here are varied as I want to learn how to comfort her and learn more about other's experiences as well.
Everyday, in the afternoon, she starts these episodes of constantly kicking and flailing her legs until she no longer gets enough oxygen. That's what happened that morning I took her to the ER. Anyway, they've started giving her roxanol to get her to stop the kicking and flailing. Now she's so out of it that she doesn't even seem to know where she is or anything. It's horrible to see her going through this.
Is the kicking and flailing something you guys have to deal with regularly and is it as intense? One day it lasted for around five hours. Today for three.
I'm tired and it's late so I'll cut this short for now and will return with many more questions later tomorrow or when I can.
Thank you in advance.

By lurkingforacure On 2009.01.19 07:34
That almost sounds like a seizuer, I would want to know from her neurologist whether it is PD related. I have never heard of it and it sounds very scary.

What is "COPD"? And was the lady you care for dx'd nine years ago or has she had symptoms for 9 years but didn't get dx'd until she was in the hospital you mentioned?

This sounds rough, let us know what the doctor says. You will find great people and lots of support here.

By susger8 On 2009.01.19 07:45
It might possibly be dyskinesia -- some people with PD get dyskinesias (involuntary movements) due to fluctuations in dopamine levels. Adjusting the medication sometimes helps.

COPD is Chronic Obstructive Pulmonary Disease.

By annwood On 2009.01.19 07:53
Welcome to our forum. Glad you found us. There are many very caring people here who will attempt to answer your questions.

It is unclear to me just what your relationship is to the PD pt. Friend, spouse, significant other? Not that it matters but it might help us to answer some of your questions.

I assume that she is on the regular PD meds. The COPD certainly may complicate things as PD has a tendency to involve all muscles, including those of the rib cage which cause us to breathe.

I would cerrtainly accompany her to the next neuro appt and have a frank discussion about where this is going as far as the PD. I have no idea what is going on with her every afternoon but the neurologist will be able to give you an answer.

Stay with us and welcome aboard.

By billo On 2009.01.19 12:21
thank you.
I will try to explain as best I can.
She is my girlfriend/roomate for almost nine years now.
She is on carbidopa/levo 25/100 every 8 hours now as the Dr. says to wein her off of it and,
Mirapex .125 increased to two tabs(.250) every 8 hours.
Clanazepam= two .50 mg pills every six hours,
Amantidine=100mg twice a day,
Remeron=45mg at bedtime,
Zoloft=100mg daily,
toprol, duoneb, advair, altace, and prednisone
and now roxanol. It took 2 ml roxanol to settle her down yesterday. She's still out of it now.
She didn't like the neuro dr, so I don't know the situation there but when she came out of the hospital she went under hospice care per her family's wishes I guess. They aren't looking for aggressive treatment anymore. I think it's wrong but I'm technically just a friend.

By billo On 2009.01.19 12:24
p.s. she's on medicare, no insurance, and hospice supplies the drugs.

By billo On 2009.01.19 13:13
and thank you lurking, and susger8. I may not always reply to everyone because I'm spread thin now but your feedback is very appreciated.

By annwood On 2009.01.19 19:58
In reviewing the medication list it appears that she is on a ton of drugs. Why are they stopping the PD meds? A patient does reach a point where the drugs no longer are effective so maybe that is what is going on here. You mention that Hospice is involved - they are wonderful. As you know they do not become involved until the pt is far advanced and in her case you are also dealing with COPD. Have you discussed the prognosis candidly with the Hospice nurse - I think it may be time to do so.

We are here for you. Ask anything you want. We make no judgement. This is very hard and we are all going through it.

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