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By lurkingforacure On 2009.12.19 08:54
Ah, the ebb and flow of PD. Yesterday my husband told me that parrot green outlined everything he saw, along his peripheral vision, but the middle stuff was normal. Anybody have this, and what does it mean?

He also told me this week that he is experiencing "the symptoms people have before they die". We will be at our fourth year of this disease come April. I asked him what these symptoms were, after saying good morning, because this was what he hit me with first thing that morning. He said he "felt like he was going to die", and that he had gone onto some hospice websites and there is a laundry list of things the body physically does before it shuts down and he has many of those, he said. What do I do with this? I want to believe he was just having a bad day and feeling worse than normal, and so was in that frame of mind, but I also believe that if HE believes he's going to die, well, that doesn't help me help him much, now does it?

IS there a laundry list hospice puts out? And if you have some of those symptoms, what does that mean? Crap, I probably have some of those symptoms, myself.

I should mention he still won't let our kids know he has PD and that, in and of itself, is damn near killing me. Our daughter is no fool and as crafty and clever as he is at "hiding" things, she is seeing that something is not right. The older and more perceptive she gets, the worse he is going to be and the less able he will be to hide it. I feel like we have this huge pimple of deceit festering in our family that is looming ever larger and is going to explode with who-knows-what consequences. I am so tired of hiding this from our kids and running out of excuses for it as well. With them out of school for Christmas it is going to be so much harder.

By annwood On 2009.12.19 10:19
I haven't heard of the eye problem but I guess with PD anything can happen.

Is your husband on an anti depressant? I think I would discuss that with his neuro. Does he want to die? Is that what he is telling you? I imagine that somewhere on the internet there is a list of how the body shuts down before one dies - like you, I have most of those symptoms every morning until I get my coffee. On the other hand, you always question when a person starts talking about dying sometime they have a sense about it. Three weeks before my husband died he told me that he was tired of fighting PD and just didn't want to do it anymore. My final comment on this is Christmas! Many people become very depressed at this time of year. There is so much pressure put upon us to be festive, grateful, merry, etc. Sometimes it just isn't there.

You know my feelings on telling the children. This is tough for you, I know. I would be willing to bet that they know and without an open, honest dialogue about it with them they are going to feel excluded, frightened and angry. This has to be causing a great deal of tension in your home. You are between a rock and a hard place. We are here for you.

By lbellomy On 2009.12.19 10:28
My husband every so often says I am dying - meaning that he is dying on that day. I will tell him that yes he has parkinsons but he does not have an infection, pneumonia or is sick so he is not dying. Whenever his meds kick in I will ask if he is dying and with a sheepish grin sometimes he will say 'no'. But after being 'off' for an extended time he just feels awful and probably does feel like he is dying. (He also has dementia)
P.S. He does have vision problems, never described what your husband did. I doubt that my husband can read at this point.

By caregivermary On 2009.12.19 11:08

my husb has vision problems but he hasn't mentioned the colors. In the last 5 months we have had the "I'm dying" discussion many times and it is generally when he wakes up. This has been after his all night sleep and naps. My husband will be starting his 20th year with Parkinson's and is in hospice care. He hasn't read anything about the dying process recently but I have and the discussions we have are somewhat in line with what I have read. Now that he is beyond most of the shingles attack the dying discussions have been reduced. I also believe we have moved from the denial stage to some kind of acceptance stage. I say it that way because neither of us fully accept this. Hospice has helped in this regard. I believe your husband has a long way to go but maybe he is starting to move just a tiny bit out of the denial stage. My husb also has dementia. Take care

By Emma On 2009.12.19 12:19
A while back my husband thought he was dying, he started sorting through his stuff, reviewing his life, etc. He's over it now, but in retrospect I realize that it was happening at the same time his Parkinson's was starting to worsen. My theory is that he had gotten used to his symptoms and knew what to expect so when they starting changing he took it as a sign that he was dying, rather than seeing it as the normal progression of the disease or movement into a new stage.

Some of the "signs" that Hopice talks about regarding impending death are things like withdrawing from other people, eating less, sleeping more, reviewing your life. Those are all also signs of depression. It's hard to know what's going on though, sometimes people do, as annwood said, have a sense of it. That was what I thought when my husband first brought it up and I was scared.

My husband's vision isn't great anymore but I think that's normal aging. Never heard of the green eye thing before, although when I had cataract surgery I saw black arcs in the corners of my eyes for a while.

If it's not one thing it's another. Hang in there.

By LOHENGR1N On 2009.12.19 12:49
Ok Lurking, I'm going to wade in on this one. The A.P.D.A. has a web site for young on set Parkinson's, I suggest you go to that and request information on dealing with children and this disease. What you're doing is living with as it is referred to sometimes an Elephant in the room. There are just so many times you can walk around it before someone asks what's this Elephant and what is it doing here? It might be time for a heart to heart talk with your husband. I'm sure He's trying to protect the children as long as He can from having to alter their lives around His disease. There are many things to be considered when trying to do this. When the Children find out and they will, questions will arise like why weren't we told? How come you didn't let Us help? Is it "catchy"? Resentment of being keep out. Also this is a chance to help re-enforce unconditional love, You love Him, He still loves you the Children will still love Him and want to help. You said they know or sense something wrong, you're right they do and by not telling them............well you know children they think it's something they did or their fault. It's a hard decision when to tell but problems will occur if this continues, at least they will have some grasp of why Dad isn't spending time with them or staying away because He doesn't want them to see tremors. It's because He's sick, NOT because he doesn't like them or can't be bothered by them. (they probably know or have heard about MJ Fox. Well Dad's sick like Him) Remind Him of the opportunity to instill in them that We don't un love or push aside someone because they're sick. We don't shun family because one has an illness. Again I suggest visiting the above web site for help. They even have a forum like posting where Children can post just like we do here on the forum! They like Us are in all different stages of living with Parkinson's Disease and can ask questions about and get advice from other of coping and dealing and helping. Or just vent and admit they're scared to someone around their ages dealing with the same things. Their support group. I don't think your Husband will or would want to keep His Children from any help and this may be a way to get Him to open up if He's helping Your Children.

As for vision Yes it is Probably Parkinson's related. Vision is processed in the brain and with dopamine lacking it can cause problems. Vision problems can be somewhat common in P.D. I believe if you look it up online you'll find more information on these problems. As for looking online and having symptoms? Well if we read them we've all got a lot of them ...I'm not dismissing his concerns we just have to keep going on. He can ask his Neuro about symptoms and perhaps a med's tweak is needed. A tweak may help with the vision problem too.

You've got your plateful right now, I wish you and yours the best! Take care, best of luck and hang in there.

By susger8 On 2009.12.19 13:04
My dad has described some vision problems, especially if he's outside in sunlight. He says he sees a fractured light-and-dark design -- I think it must be kind of like those Op Art designs from the 1960s, if anyone remembers this far back.

I recommend trying to keep up with an annual eye exam. I didn't get my dad to the opthalmologist one year because he was recovering from his broken hip, and it turned out that he had developed glaucoma. It's unusual for glaucoma to progress that fast, but he already had damage to his optic nerve. I read that low blood pressure accelerates that kind of damage, because the optic nerve doesn't receive enough oxygen through the blood. Since PD meds tend to lower blood pressure and most of our PWPs probably have low BP, it's something to be aware of.

By lynn On 2009.12.20 15:22
The erectile dysfunction drugs can cause visual disturbances.

By in-faith On 2009.12.21 12:25
My FIL has been having vision problems, but when I took him to the eye doctor, the results were confusing. He could read the letters one time, but not the next time (yet it was the exact same print). The eye doctor (who wasn't aware of his PD) suggested it could be because of droopy eyelids. But after doing some research, I realized that it is quite likely related to PD.

My FIL had been using drops to help with irritation, but the eye doctor also suggested "TheraTears" (an Omega 3 capsule especially for eyes) and my FIL said that these have been helping him with the irritation. (Just a warning though, if you are interested in these - they are very large capsules).

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