For those who care for someone with Parkinson's disease
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By Shadow99 On 2016.07.12 13:29
Hello, I am new here and look forward to getting a few answers. My wife has COPD, CHF and recently diagnosed with Parkinsons. Her demeanor has changed so much. I ask her if she's depressed and she says no. She shows little to no emotions and has very short answers to questions. Is this part of the disease? I can't tell if she's mad, angry, sad or happy anymore. Hospice has been called in after this last hospital visit and she has limited motion. She can walk with a walker a few feet to the bathroom. Anything too strenuous she gets very short of breath (COPD). I don't want to keep asking her questions about what she is feeling or thinking....but I can't figure it out anymore. Thank you.

By jcoff012 On 2016.07.12 14:22
Welcome to the Forum.

There are so many similarities in the Parkinson's journey, but there are, too, so many differences. Each of our PWPs is at a different "stage"/time. We count on each other and we often discuss hot button issues, although we all know we have ONE rid the world of this awful disease.

My husband is my PWP who was diagnosed eight years ago and only this past few months has started to show signs of PD advancing. It is hard to see the love of your life for over 50 years start to decline.

So, yes, lack of facial expressions and emotions is a huge part of PD. Often, it is maddening. It shakes us to the core to want and need affirmation from someone who no longer understands how hard it is to NOT receive it. We do not blame the PWP, but we want and miss the affection!

I wish you peace and the patience you will need in this journey. Rely on family and friends. Ask any questions you need...sadly, someone here has most likely faced it! Hugs, Jane

By Shadow99 On 2016.07.12 14:39
Wow Jane, thank you! I have read about this disease and symptoms but never heard it from another caregiver. It is sooo extremely sad. Do you think my PWP knows she is lacking these emotions? Almost everything I ask her is just ok or alright. No fuss no nothing :( Thanks again, Melissa

By jcoff012 On 2016.07.12 16:47
Melissa, others will respond, too. We all understand the challenges of PD. Our resident expert here is Lohengrin, real name Al. He can address and answer from the PWP's side. He has had PD for many, many years and offers his insights into the inner workings of the PD journey.

I can only offer my opinions based on our eight years facing PD. That said, we also had a 22+ year journey with my husband's amazingly strong woman!

Al will correct me if I explain this wrong, but to answer your question, I have to say it seems to me that the changes in emotion and personality are PD rearing its head. This disease takes and takes from a PWP and keeps taking until we often no longer know the person we once knew.

This is why you see and read postings here that are sad or ones that will hit home...there is a LOT of "I felt so alone til I came here." Part of that is because this disease robs us all of freedom, love, and companionship when we thought we would finally be able to retire and enjoy each other.

Remember, it is NOT ok to ignore YOUR needs. You MUST keep doing things you enjoy and things which lift you up. You need to take care of yourself so you are able to help her. Talk to her doctors and tell them what you need, too!

Unless Al or someone else says differently, I would say try not to delve to deeply into the "whys" because as of this writing, no one knows why, when, or why her/him? We just have to do the best we can to face this beast! Higs

By LOHENGR1N On 2016.07.12 17:10
Hi Shadow, Welcome to the forum. I'm a patient with Parkinson's. Facial masking is part of this disease and can lead to many, many frustrations and misunderstandings. We don't show our emotions much anymore. Our body language lies. Add to this a slowness of movement (and think response time as movement) We can come across as depressed even when We are not. People in general use and rely on facial expressions and body language more than they realize, it's common a communication method that is almost subconsciously done. Then We miss it and automatically because We the non-patient substitute to fill in the gaps missing in communication. I.E. facial expression missing slow movement and or response time = depression and lack of emotion. Mostly We patients still have our emotions it is just the disease makes it hard for us to express them. So please don't mistake failure or trouble expressing an emotion as lacking that emotion. I caution a lot of caregivers about "hovering" If She tells you She is not depressed try taking Her word for it. While trying to help and thinking She's depressed by keeping asking if She is may contribute to frustration in Her because you keep asking, also if She is having trouble getting the words from brain out and into speech happens with some Parkinson's patients so repetitive questioning becomes to them pointing out they aren't functioning and depresses some or frustrates others. Please don't get upset at yourself now because not many places will tell you these things and it is rare to find it written up many places online. Take it as a no harm no foul kind of thing you didn't understand before now you have information to help you in helping her. You have found a great place here on the forum. There are many, many people here to help you along with this journey none of us asked for but have found ourselves and our loved ones on. Again welcome to the forum and ask away we're all glad to help. Take care, best of luck and hang in there

By Shadow99 On 2016.07.12 21:37
Thank you Jane and Al! I've gotten more insight into this disease from this forum than any doctor or google search. Now i realize my PWP is having emotions but just not able to express them. And I can quit asking her over and over if she needs to talk. And now i realize her "stares" are slow movement of processing and nothing more. I will keep hanging out online here. Thanks, Melissa ♡

By Trusting On 2016.07.13 20:54
Welcome Shadow,
I have also learned so much from this group too and am thankful to have each one of these wonderful people to help in this journey.
My husband has an extra problem with communicating. Not only has he lost his facial expression, has slow movement, he also wears hearing aids in both ears and now has progressed into dementia. I can never tell if he "just can't hear me" or "can't process what I'm saying." I know he can't help it but some times I just want to scream b/c it gets so frustrating. Blessings to you.

By Shadow99 On 2016.07.14 22:00
If my PWP already has lost most facial expressions, has slow movement and slowed processing....what stage might she be? Is dementia the next to come? She already takes sinemet to help with encephalopathy.

By LOHENGR1N On 2016.07.14 23:47
She takes the Sinemet to replace lost neurotransmitter Dopamine. I myself don't like to use "stages" the Hoehn - Yahr scale has been around since 1967 and much has changed since then. Is Dementia next to come? No one can say it was viewed that around 50% of PWP develop Dementia, but many contend it is lower because Doctors didn't consider delirium vs. dementia. So many suffering side-effects of medication were being labeled as demented. Some like to use stages however the stages are not set in stone as much they use to be you can go from a 4 back to functioning as a 3 by tweaking some medications that were not around in 1967. Also each of us seem to get a custom made package with Parkinson's Disease. Some develop balance problems and fall several times a day others don't fall at all. others develop sight problems some don't , others have wild blood pressure difficulties while some don't. So we can't tell what is next to come best anyone can do is guess. And when it all comes down to it what comes, comes. We can't stop it all we can do is try to live as comfortable as we can with it. Caregivers can drive themselves nuts with stages and what comes next. We watch for signs was that a tick or silent sneeze? Is that the disease progressing? Do I have to watch for that now? They stumbled is that a precursor of falling or was the rug edge up? We can stressout over every little wrinkle if we don't watch oueselves instead of interacting and enjoying what we have left with our PWP. It's nice to know and be on top of things but sometimes ignorance is bliss too. Sorry I can't give you the answers you seek right now. Maybe someone else here can give you more on the "stages" best I can do is hang in there.

By Shadow99 On 2016.07.15 01:13
Thank you so much Al, for your feedback!

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