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Topic Most Unexpected Aspect of PD Go to previous topic Go to next topic Go to higher level

By makrivah On 2013.03.16 15:53
Sometimes I feel like PD is a vast unexplored (undocumented?) universe. Even though I read a lot and have informative doctors, there is always a surprise waiting just around the bend.

Once your PWP was diagnosed, what was your most unexpected aspect of PD?

Maybe by sharing this information, we can all be better prepared.

For me, it was the cognitive decline. I expected the physical tremors, rigidity, walking, turning over, etc.; but NOT the loss of his mental capacities. Any books, articles, conversations always listed cognitive issues as possible but usually happens with normal aging. Big surprise when things started to fall apart for my PWP (and thus for me and our family).

By jcoff012 On 2013.03.16 17:38
Mine is a common aspect, but for us, it was devastating...the belligerence and sharpness of his attitude that came so unexpectedly. My husband is generally the kindest, most gentle man, but in the beginning, he became so harsh. Not sure if it was one of the stages of grief, or if it was meds, but it drove me to this board.

He seems more aware of these outbursts, and hasn't really had a bad one in over six months. Or, maybe I have learned to fight the bigger battles and walk away from the small challenges? I don't know...

I remember asking Al if "being a jerk" was part of had a great answer...Simply put, no PDer WANTS to be so, but often he/she is too tired to take the time to give the caregiver a long explanation, so he/she comes across as abrupt (I still say, "a jerk"!) lol

Hugs, Jane Just my observation with PD.

By parkinit On 2013.03.16 18:52
The mental issues, yes, that is the most devastating: The hallucinations, the dementia, the side effects of the drugs (isn't the disease ENOUGH??) such as hypersexuality, the punding (mentioned in an earlier article), DDS, mood swings, and the belief he can still do things that he cannot (like driving).

Those are tough aspects to handle.

As mentioned in another previous article - the enormity of being so "responsible" for everything.

By LOHENGR1N On 2013.03.16 19:25
To Me the most unexpected aspect of PD was after being diagnosed was the lack of information "out there". The foundations and org's lack of educating on or reluctance to discuss the "hard facts of PD". A sugar coating of the disease. Young onset was almost unheard of back then. Finding information about Parkinson's was hard and you almost couldn't find anything about young onset.

I found this forum in the back of a neurology magazine, got access to a friends computer, joined and then it was gone...vanished! I kept looking for it as did others and then it was back re-organized but back! Boy were we glad too! Thankfully it has been here ever since.

Now the most unexpected aspect is still information. It seems still most are diagnosed and sent home without much of any basic information, any what to expect. But at least more information is available once you find out how and where to look.

By Poostie On 2013.03.16 22:19
For me I think the most unexpected aspect of Parkinsons is its unpredictability. My husband has had Parkinsons for about 10 years and I am never able to forecast how he's going to be in a week...a month...a year. Right now he seems to be doing well. He seems happy, works in the yard and in his woodshop etc. Next week who knows. You just have to be able to roll with the punches. Our grown children and others don't seem to be able to "get" this and to tell you the truth I'm not sure I do. Sure as we plan a big occasion Daddy is not doing so well and doesn't feel up to traveling, sleeps most of the day, and is having memory problems. A week later you might have a hard time guessing that he has Parkinsons because he seems so normal. Not to complain.....I have him with me and for that I am most blessed.

By Lynnie2 On 2013.03.23 14:45
I think the memory is also an unexpected aspect of PD. He has many symptoms and another unexpected sypmptom is excessive blinking called Blepharospasm. He was blinking rapidly and it caused tiredness in his eyes. He couldn't drive without difficulty. For the last year he has been getting Botox injections above and below the eyeball which has helped tremendously and he's able to continue driving.

But back to the memory. He entered a Parkinson's program where he would be wearing a visor and instructed to do certain things, e.g. watering plants or picking out groceries on a shelf in a virual reality room. This was the second stage of this program and after they gather all of the information, the students will be making a microsoft program using the visor for rehabiliation.
Anyway, he had to take a cogitive test before he could continue with the program and they would also test his balance . He didn't pass the memory test though. I found that hard to take but he wasn't upset about it which was a good thing. the way, one of the things they asked him to do was count by 7's backwards from 100. How many people can do that on a normal basis? Try it. and think if you were stressed and only had a few seconds to come up with the answer, how would you do? Anyway, I am off the subject at hand.

It's just hard all around seeing your spouse loose control of his body....and you can't do anything about it.

By makrivah On 2013.07.01 23:16
I'd like to re-start this thread. I am really interested in exploring the question: what was/is the most unexpected aspect of PD in your particular situation? I'm wondering if we could communicate our observations to the medical community to help other people as they start their journey with this disease. Many thanks for your comments.

By jcoff012 On 2013.07.02 09:36
I think on of the most unexpected things that is happening to our family is the denial. I think my husband and I are well aware of PD and the future, but our grown children have yet to understand. While they are avid Internet users and have researched PD, I wonder if they are convinced their Dad will "beat" it and not have to face the full effects of the disease. Therefore, they don't appear to think PD is as difficult as it truly is.

This denial has brought on unexpected problems for our family, as I am sure it does for others. While one daughter seems to embrace some aspects of PD, one simply doesn't remain in contact with us, chosing to not accept the inevitable. This is VERY hurtful to a man who was, and still is, the consumate "Dad". He simply is hurt by it all. And, for me, this is devastating. The loss of closeness, the loss of being an active part of her life is often unbearable to see in his eyes when we have little or no communication unless we initiate it. This was a totally unexpected aspect of PD...the emotional loss.

By Freespirit On 2013.07.02 12:03
Yes, I believe the denial is an issue in our family as well. People think PD is a disease that produces motor symptoms only. We all know that is the furthest from the truth, but hey, if WE were not informed as the actual patient/spouse then how can we expect the general public to know?

For me, the cognitive decline was the shocker, and above all, the most difficult to deal with of all symptoms.

By olpilot On 2013.07.06 00:55
I think I have to go with being cut out of family life. Maybe it's easier to pretend it isn't real if you never see it. My youngest daughter is a nurse, who is specially trained for things like dementia care, before diagnosis we talked at least once a week, now it's month's. Maybe It's a form of denial, I drive very little, they live 2 1/2 hours away and I haven't seen either of my daughter's for 2 years, or their children. I'm about to become a.greater grandfather and I've had one phone call to tell me, and everything else I learn is on Facebook. I guess I never saw that coming. My son lives 600 miles away, a couple of years ago we.had a terrible falling out, now we talk nearly every day. It really makes no sense. My wifes family thinks I'm trying to take advantage.of the disability system. It is after all so much better than what I was making as an airline pilot. What and how.people think is a mystery, as much as day to day life is. I guess the fear of what they might see makes them uncomfortable, out of sight out of mind.

By phoenix On 2013.07.07 22:37
Freespirit, I agree. When Dave was first diagnosed, we were of course upset but thought the PD meant he would have tremors and eventually not be able to walk. 10 years in, and he doesn't know who I am most of the time, doesn't know how to use a remote or a telephone, forgets how to floss his teeth or why he should...the list goes on and on, and I am continually shocked and overwhelmed by the decline. Hate this disease.

By Freespirit On 2013.07.08 09:46
God bless you, Phoenix.

By Trusting On 2013.07.09 21:25
I didn't expect the mental decline either. I knew very little about PD. I thought it was just shaking. My PWP doesn't shake, he just moves at snails pace. He gets lonely and so do I as the caregiver. He has so much trouble completing his sentences and thoughts so it's difficult to communicate like a couple anymore. He doesn't retain what he reads so he watches tv. If it's not a show that he is really familiar with he says he fights to keep up with what is going on. It's just sad.

By Poostie On 2013.07.09 22:29
Trusting, I could have written your post. I try not to dwell on it but I too feel VERY LONELY as my husbands symptoms are the same as you described and we're not communicating a lot either. There are probably many more caregivers who feel the same way.

In the Parkinson's Disease Caregiver Commentary there is an article called A CAREGIVERS JOURNEY by Georgianna Grant which has been helpful to me in giving me strength and courage. I think Georgianna used to participate on the forum but I don't think she comes here any more as it seems her spouse passed away if I'm not mistaken. Georgianna, if you see this thank you for your article and sharing. I hope I can be as brave and loving a caregiver as you were.

By makrivah On 2013.07.09 23:04
Trusting and Pootsie, I too am lonely. Our 44th anniversary is coming up... where is that man I married? No more entertaining conversations. Lots of miscommunication due to my thinking he understands what I said, or he thinks he's passed on information correctly. He hasn't read a book in ages. So can't talk about that. TV that has content is too hard for him to follow. He is just fine to watch repeats and repeats and repeats of simple plot shows. When I ask what he is watching, his typical reply is "I don't know." And then there is all the sleeping (he says he's "checking his eyelids for leaks"... at least a bit of humor). I wish the medical community would address the cognitive side of PD.

By stillunsure On 2013.07.10 14:42
Unbelievable! You all could have been describing my husband. He's only 1 year into diagnosis, and the only visible sign is his right hand tremor. He also cannot follow any TV show even though he tries. If I ask him a question about what just happened, he tries to bluff, but it doesn't quite work. Not on many meds, and even had to decrease Sinemet due to dizzy spells. After only a year ... I can only imagine, especially based on all these posts.

Still can't believe it.....

By lilflower On 2013.07.10 15:49
My husband is also a Teddy Bear on most days but then out comes the grizzly I've learned to walk away and after the first couple times he finally realized he was the reason I was walking away. He can still have his moments but now I just look at him and he knows. What I'm going through now is panic on his part whenever he can't see me. I was in the garage doing laundry and he forgot I told him. When he couldn't find me he started to yell for me and I couldn't hear him over the washer and dryer noises, needless to say when I came back in he was a wreck. Next time he will be my helper doing the laundry. Every day is an adventure most of them not so good. I'm in a wheel chair myself right now and he has his power chair he was tailgating me I stopped he didn't now we are dealing with a huge gash on his leg. At least the Dr is having home health care come to the house twice a week for awhile to clean and monitor his leg. Hallucinations change from day to day. Slid out of bed the other day it took me an hour to get him up. I could go on but I would rather stop before I get depressed.

By phoenix On 2013.07.10 22:23
Hey lilflower, vent as much as you want, that's why we are here. Your life sounds a lot like mine. Yesterday my hubby was convinced the Pope was in our living room. Today dune buggies were racing through our back yard, and he was very upset because I was doing nothing to stop them. Every day is a new adventure - hang in there, you're not alone!

By makrivah On 2013.07.10 22:47
This afternoon and evening were interesting... well not really... in fact, quite boring. He fell asleep (and I mean ASLEEP) at 3:10pm in his recliner. The dogs and I were making normal household noises and the TV was on. I woke him at dinner time, he didn't want to eat. Then immediately fell back to sleep in the recliner. Still out cold at 10:40pm. (That make 7.5 hours that's he is out cold.) I'll be going to bed at 11. I can guarantee that he will be fully awake by 11:15 with the TV on and loud until the wee hours. I can't imagine how ya'll deal with hallucinations, etc etc, but the quiet and loneliness is a killer too. sigh. As Scarlett O'Hara said "tomorrow is another day!" Everyone hang in there. p.s. at least when he is asleep, I can watch (or do) what I want. There is always a silver lining, isn't there?

By Poostie On 2013.07.11 16:37
Why am I laughing??? I know it's not funny but you know the saying--If you couldn't laugh you'd cry! Your descriptions are too real but too funny at the same time. My PWP is asleep and I am lonely and in need of a good laugh--the Pope, racing cars. Those will do until my husband wakes up and tells me he wasn't sleeping-- just "checking his eyelids". Just kidding, I hadn't heard that one. Good thing we love them so much!

Yes, hang in there and remember Scarlett O'Hara!

By jcoff012 On 2013.07.12 10:27
After thinking about this for a bit, other than my original post of watching how our oldest daughter reacts/ignores her Dad's PD, I have to say that the loss of a strong bodied husband is one of the things I wasn't expecting. I guess I thought he would be "different" than the others we know and have met who have PD. I really miss his strond hugs and being held close by the "Marine" I married. What remains is just a very slight, thin man who shuffles his feet, slouches forward, and has no body mass. True, he has been on Weight Watchers with me, but it's the PD that has done the damage. He eats only healthy foods now, that doesn't cause the extreme changes to his physical appearance that PD has done.

How do you cope with losing your love of your life to this disease? It isn't his "fault", but he is slipping away...and I miss him. Like others here, he sleeps a great deal. He now takes a nap two hours after he gets up, one in the afternoon when our grandson naps, and one before bed! That's a LOT of sleeping! There are days it is a struggle to stay on Weight Watchers because of the loneliness and boredom...I USED to bake! lolol

We still are lucky in many ways...we are still able to do most things, just at a much slower pace...we are going to a movie at noon (because he needs to plan it around his naps...HIS words...)...but, at least we can still go together.

I hate PD. We all do. Maybe it is a blessing that we are all at different stages of the journey, so that we can bolster each other along the way. I just wish none of us were here. But, more than us, I wish our spouses and parents did not have to face the daily challenges of PD. I wish they were free of disease. They do not deserve this assault to their body and mind.

I think what keeps me trying to stay positive is the look in his eyes. I see it. I understand it...I see him looking at himself in the mirror, or getting out of the shower, or watching me watching a handsome young man on tv...and there is an extreme sadness in his eyes. He almost implores me to NOT notice his body withering away...It is then that my love kicks into high gear...I need him to know it really doesn't matter, that we are going to fight this together...without saying a word. A hug, a pat on the rump, a suggestion "we" need to get some new clothes to fit "our" weight loss...anything to let him know it's ok.

Life does go on, even after the worst that we face brings us down. It's how we have learned to get back up and keep going that makes it worth living.

I wish for everyone to have peace and to be able to find joy. When things get bad, when life is tough, know that we all are here. No matter where we are in this journey, someone here will be there to listen and understand...and help.

Hugs and love, Jane

By Grammy7 On 2013.07.12 10:35
Jane your posts help me so much. You have a way of putting into words the things I and many of us need to hear. Your dedication is above and beyond. Thank You!!!!

By jcoff012 On 2013.07.12 19:47
Sweet Grammy, thank you. I guess my Mom and Dad raised the eternal optimist! lol Maybe it is because we have faced so many trials in the last seven years...who knows...but, to me, it does no one in life or on here especially, to constantly dwell in the negative. Life is awful sometimes. There are things about it we cannot change. But, sometimes life is wonderful...

I just responded to Dan on another topic...he is an amazing man who dearly loves his wife, June. We met here through a mutual love of Hawaii..he is such a good man and a wonderful, loving see it in everything he writes. His goal this fall is to host a luau for his wife, husband and I are going to Maui for 10 days and he is having his luau...a beautiful idea. LOVE it!

Michelle and her husband just married a few months ago and she speaks so lovingly of him, too...she knows what is coming, but she embraces their is a joy to get to know her, too.

Donna is an amazing person who works fulltime in real estate and gets weary because of her husband's needs but she still posts regularly on Facebook in an upbeat way and I enjoy reading her thoughts and her zest for life.

Olpilot is an amazing writer and kind person who seems to love life and is fighting the fight with great dignity. I look forward to reading more thoughts and experiences.

Al is my mentor and a wealth of information. He is glib, dislikes the hubbub surrounding MJ Fox (we agree to disagree on that!), but, he, too, is kind, understanding, and is my well as the foundation for many of us.

The list goes on...Carman, Phoenix, and so many others...we all have been at this different lengths of time, with different spouses or parents involved.

So, although I appreciate the kind words, remember, there are a great many kind souls here to help. Just ask! Hugs and love, Jane

PS..It isn't hard to love a man who, even now, puts my and my kids' needs first...

By dans316 On 2013.07.13 10:37
Thanks for those kind words.

The one aspect of PD I never expected was the lack of emotion. I knew about the stone face but since June's diagnosis in 2006 I've never seen her cry since. Even when she fell and broke her hip in 2010 and with a breast cancer diagnosis and subsequent mastectomy in 2009, she didn't shed any tears. In January of this year, two of her sisters died on the same day and once again no tears by her. I know there is no normal with Parkinson's but is this typical?


By LOHENGR1N On 2013.07.13 11:02
dans, While there is no normal with P.D. I don't think this is typical. Has She had Her eyes checked? Sometimes P.D. will effect the eyes so tear production is lower than normal or almost non existent. Also perhaps there is some blockage of the tear ducts. Another consideration would be some of her medication causing emotional dis-connect? I really don't know and can only toss out ideas. I do know most of the problems with perceived lack of emotion is facial masking leading others to believe our feelings are lacking which I can testify is not the case we generally feel and hurt the same but P.D. robs us of showing that feeling in facial expressions which is not what you're describing here. I'd Ask the Doctor about it and insist it be looked into as it is neither normal or typical in my opinion.

By jcoff012 On 2013.07.13 16:33
I agree with Al, Dan...take her to the doctor for a MIL didn't show emotions much, either. Now that you mention it, she didn't cry when my FIL died the year before she did...however, I distinctly remember her sitting beside him, holding his hand, with her head on the bed til the EMTs came to the house...the emotion was there, but she didn't cry. Carl seems to have the opposite...his eyes tear WAY too much...there are times when he looks like his is crying, it gets so thick...I would suspect it's the meds, but it comes and goes, so he says he's not bothered by bothers me more than him! Do ask June's doctor; he would know the side effects of her meds, her history, Al says, and like we SAW...the emotions ARE there, they just might not be as WE want...but, they are there. Hugs.

By dans316 On 2013.07.14 15:56
June was just to the eye doctor this past week and all was well. Also, she only takes 3 prescriptions, Sinement, Fludrocortisone and Tamoxifen. She also takes Iron, Caltrate and Vitamin B-12, so not sure it would be the meds. She is on a very low dosage of Sinement, 1/2 tablet 25-100 3x per day. The fludrocortisone is for low bp and the tamoxifen is for breast cancer. When we go for her checkup, I'll bring this up. Thanks for the comments.

By abruno310 On 2013.07.16 11:18
jcoff0102..i am new to this board..driven here by the aggression as well..I reconnected with a childhood friend last year with Parkinson's and I thought he was not that bad till we started living together. I know aS A CAREGIVER I AM SUPPOSSED TO BE PATIENT, BUT what am i to do when he punches me in the mouth, spits in my face and tells me he is going to kill me. I called the police and they arrest me because they see his walker and his ranting. When he is mid dose of his carbidopa levidopa and the other agonist i can't remember now, he is a different person...rude, awful, manic, calling other women, I tried to talk to his neurologist but then the doctor told him i said his meds were too strong for him and he took me off his HIPPA... he takes them so he can walk and do his daily activities but then he is just awful to be around. i am trying to leave..his family will not help him..his exwife has blocked his number and his 23 year old daughter has not spoken to him in 6 years. I have tried to email social workers, whatever, but he is not aware of how he is and when he sees these people is on his best behavior....when he is not on his meds and can't walk he is sweet and wonderful. he says he has no where to go, so I stay..i am so out of my mind with what to do about this.

By jcoff012 On 2013.07.16 18:16
Abruno, there are a great many people here (sadly) who face or have faced situations such as yours. They WILL come on and try to help you. My husband and his mother both have/had PD (she died three years ago), and did not exhibit these awful symptoms, so I cannot be of much help. I know you really want to help your friend, but I think you need help yourself. I think one of the first steps I would take is to contact a local PD group for help. There is also the Council on Aging.

I am certain someone here will have much better answers than I. I wish you well and please keep posting until you get the help you need. Hugs and take care of YOU...Jane I admire your dedication and loving heart, but get him help...and yourself some respite.

By carman96 On 2013.07.17 23:41
No one should ever be hit or threatened! His Parkinson's is no excuse. My advice to you is to get out immediately. I would say this to anyone who has been abused. Just my opinion.

By Witsend On 2013.07.19 12:25
For me, all of the cognitive issues were unexpected. AND the doctors never, never, mentioned them. Never. We've been to three neurologists, and they just walk right around it, only paying attention to how he walks and moves, and then they say "Well, you're doing great". Really? Seriously? Wrong!

So I guess the most unexpected thing for me is that the doctors are zero help. All they do is prescribe and rush us out of the office. Very disheartening, and without this forum I would feel completely alone and unsupported.

By makrivah On 2013.07.19 15:08
A corollary to being surprised by the mental/cognitive decline is unfolding this week. Last Friday evening I fell stepping off a curb made from railroad ties which resulted in uneven heights between the sidewalk and street. Broke my ankle pretty bad. I'm in a cast with total bed rest... keep ankle total immobile with NO weight for 3 weeks. On Aug 5, Doctor will reevaluate and decide if surgery is necessary. (You can bet your bippy that I am following his orders to the letter!) So my dear husband (PWP) wants to take care of me so badly. OMG. His heart is in the right place, but the execution of his "plans" is sad to watch. For example, "Can I get you a glass of water?" He does, but he leaves the full glass on the kitchen counter. I ask him to bring it to me. He says: "oh, I thought you'd come and get it." huh????

Fortunately, friends are bringing in meals. Unfortunately, he can't remember what was brought in that afternoon so he gives me whatever he can find in the fridge. (I hope I've taken care of that by asking friends to bring the food closer to dinner time, give me a list of what they've brought, and what needs to be heated, mixed, etc. Hopefully, I can walk him through prep and serving.) We will see what happens this evening.

The cast is VERY heavy and makes me lose my balance. I have crutches, 4 point walker, and the kneeler walker... I've fallen on each one because of being "side heavy (if there is "top heavy," I guess there is such a thing as side heavy???). The other complication is: I had a total hip replacement last August on the same leg as the broken ankle. Soooooo, my leg and back are still not back to 100% strength. When I need help moving around, he just doesn't know how to stand and distribute his weight What a pair we are!

Back to the point of this post. Seeing his inability to think ahead is so terribly obvious. His marathon afternoon naps take a toll on missing lunches and very late dinners. Since I'm in our bedroom laid up, and he's in the great room watching TV (i.e., checking his eyelids for leaks), it is almost impossible to rouse him. ARRRRGGGGG!

enough. Just another aspect of PD I didn't expect.

Thanks to everyone who has added their comments to this thread. I hope to analyze the replies and prepare a report. I'm not sure what to do with that report except to pass it along to our doctors, PD foundations, and PD research organizations. Keep your comments coming.

You guys are the greatest.

By carman96 On 2013.07.19 15:54
Definitely the cognitive decline is the worst part and the one you can least prepare for. I never know what kind of weird thing he is thinking
or seeing or trying to do.
So sorry you hurt yourself! Sounds a lot like what lilflower is going through. I try to be very careful but accidents do happen. Not sure what I would do in that situation.
Hang in there!

By sharonj On 2013.07.19 16:43
My younger sister was diagnosed with PD 2 mos. ago. She had a bad fall, ended up in the hospital and then a rehab facility. I knew something was wrong with her for a long time, but she wouldn't go to the doctor. She is now in an assisted living apt., as she cannot live alone - tremors, still falls, etc. The biggest change has been her cognitive decline - she cannot follow through on plans or handle her own affairs - she is so different. She has been a dear friend as well as a sister for many years, and this mental change in her has been so traumatic, I think more for me than her! Her emotions seem pretty flat. I am glad I found this forum.

By tipplelady On 2013.07.20 03:02
Most unexpected aspect of PD is, it is soooo not just about tremors! 42 years married in Sept. And never raised his voice, not once, until 6 months ago. Very sarcastic, snide, belittling, just to me so far but I am who spends 24/7 with him. I am on oxygen since March and now the new vs therapist feels that hubby is my caregiver, I wish. I am sorry but I can't keep going right now. I hope and pray all of you have someone they can talk to and maybe get a hug that they didn't have to ask for. Bless all of you and caregivers everywhere.

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