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Topic Gap between PWP and caregiver's perception of symptoms? Go to previous topic Go to next topic Go to higher level

By NW_Raven On 2010.11.03 14:20
A gap is growing between me and my wife, who was diagnosed with PD two years ago, over our perception of her symptoms. Since we have in all other respects a close and warm relationship in which we share thoughts freely, this is distressing to me.

My wife has tremors on her left side, in the arm and sometimes the leg. Her left arm is atrophying-- it is always drawn up to her waist, like a bird's injured wing. She has pain in that arm and its hand, which is weaker than normal. Her left shoulder is drawn up higher than her right. These imbalances have altered her walk so that she rocks side to side a little and her stride is shorter. Not an expressive person, her face is getting even less so. Finally, she has increasing difficulty with any form of stress and sticks even closer to routine than normal. In all other respects she is extremely fit and healthy. She walks, plays field hockey, does yoga, works with weights, eats carefully, and more -- all of which gives her a slim and toned figure and healthy skin. Her mental attitude is also healthy. She is not taking any medications yet, although the neurologist has given her the option.

Nevertheless, every week, I see some small progression in the symptoms. I don't think I am looking for them. But as the person closest to her, I tend to notice how symptoms rise and fall in severity and what new symptoms arrive and appear to stay. Our children have left home, so the only other people observing her (her mother, her friends, her naturopath) do not see her as frequently as I. Her neurologist, who sees her only once every 6 months, has said that the symptoms are progressing only very slowly.

I have stopped discussing with my wife any new symptoms I observe. I let her tell me about anything new, but, a stoic person, she volunteers reluctantly. I have stopped because I discovered that we would disagree on them. She just wasn't seeing some of the things I see, such as the change in her walk, her shoulders, and her face. She insisted that the symptoms were progressing very slowly or not at all. One reason I have ceased discussing our differing perceptions is that I think she needs to believe in her perception and I don't want to undermine such a positive outlook. So I keep my perceptions to myself, perceptions which I feel are essential to being prepared for her care.

Unfortunately, this means that a gap has appeared between us, one with which experienced caregivers out there might be familiar but I am not. It seems to be my first shift into the role and mindset of a spouse who must look out for the PWP's best interests while that person might not understand or appreciate it fully. Indeed, I could even see resentment building up on my wife's side should the gap in perception increase. She has already suggested that I need to be less pessimistic. Perhaps she is right. But tremors of increasing severity are hard for me to ignore. And now, slight personality changes may be appearing. Am I the problem?

By LOHENGR1N On 2010.11.03 19:33
NW_Raven, Hi and welcome to the forum. Interesting post, the drawing up of the arm isn't atrophy it comes to some with Parkinson's Disease (the arm draws up resembling at time the arms of a kangaroo.) Atrophy is wasting away of muscles. You reminded me of many years ago when I went to train with my service dog. Lots of pictures were taken and much to my dismay in every one of them my arms were drawn up like described! I've never been a vain person so mirrors and pictures don't play a large part in my life but it did upset me. As I talked about this to my neurologist he said well yes but a lot worse could have been happening or happened than that. Thinking about his reply, he was right. Plus if I had noticed or been told I probably would have thought about the arms or worse yet thought everyone else noticed and was gawking at me! What I'm trying to say is don't worry about many of our symptoms...........We've got Parkinson's Disease, We'll manifest symptoms of Parkinson's Disease. It can't be helped. You as a caregiver have a very tricky path to walk. I as a patient have to walk another sometimes parallel path or intersecting path. Yes, you'll get resentment if you point out symptoms we don't mention. We might not mention these symptoms hoping others aren't noticing them and if you point them you've kind of told us hey people can see that! Instead of helping like you mean it to we may get self-conscious about it. The more pointed out the more we'll feel like we're under a microscope of you watching our every move. We have to live day to day with this disease, You have to be careful not to let this disease overwhelm your life and thus become more the victim than we the patient. You're both new at this, there is progression yes but to worry too much about it is to live it twice. What your imagination perceives in the future, then what actually develops in the future. (they may and probably will be different)

Your Wife sounds active and adapting. Enjoy these activities and moments now. Don't let the disease steal them from you with worry of the future no ones knows what that will bring. You show wisdom already in deciding to not mention your perception she does need to keep a positive outlook. You, just out of love and concern might be watching and reading more into a little hitch in the get along than is really there. Again welcome to the forum I'm sure these great caregivers/partners here will have more wisdom and guidance to give and help you than I have. Take care, best of luck and hang in there.

By sarakayhatch On 2010.11.04 15:33
I, like you, noticed my husband's symptoms and in fact knew something was very wrong long before he did. He just kept telling me it was the aging process. He is 74. But I could see he was having trouble getting up from chairs, had a stone like appearance in his features, his handwriting had changed and he was shuffling while he was walking.
He finally agree to see an ankle and foot doctor who said the circulation was fine in his legs and feet and he needed to see a neurologist. The neurologist gave a diagnoses of PD. We will see her for tests results and treatment next week. We Think he has had PD for more than two years but the disease is progressing more quickly now.
I see subtle changes in him daily especially with his cognitive functions. He is getting forgetful and can't seem to keep my work schedule straight. He still drive, shops, cooks and does the laundry. It just takes him much longer as he seems to do everything in slow motion these days.
I was very worried about him driving out on the highway and I asked the neurologist in front of him if this was wise and she said no. It was a great relief for me to have her affirm what I was worried about.
I drive when we go anywhere because I am too nerveous when he is driving as he seems to have debth perception problems and he drives slowly.
We are trying C0Q10 as I read that it can helps PD. Also we are hoping that the meds will help him function better.
We have had this diagnosis only a couple of weeks so this is all very new and we are taking it a day at a time. Fortunately I am a caregiver by profession so I have had a lot of hands on experience taking care of disabled people.
I am trying not to point out his the physical manifestations of his disease and appreciate this information site.

By Emma On 2010.11.04 16:15
Hi and welcome to the forum. We have been at this for a while now but I remember well the early days of the disease. I too noticed my husbands symptoms long before he did.

As LOHENGRIN pointed out, the future will unfold and it may or may not be what you expect. The symptoms you see may or may not be important. Nevertheless, I personally think that it's a good idea to keep a log or diary of what you notice. If it turns out to be nothing no harm no foul. However, over time many situations have come up when the doctor has asked me if, when, where I first noticed a certain symtom and I just can't remember. As the disease progresses this information could be useful to the doctor.

I have also found that our neurologist is receptive to having me mail notes or summaries to him prior to our appointments. That way I can make him aware of things that are going on without upsetting my husband. I do this infrequently but there have been times when it's been very helpful and lets the doctor open the door so to speak without me always having to be the bad guy.

Again, welcome to the forum. For me the information, support and friendship I have found here has been a lifesaver.

By NW_Raven On 2010.11.04 19:17
Thank you, LOHENGR1N, for the thoughtful reply. I had not considered a couple of the points you made as a PWP: that my wife (I'll call her "Azalea" after an essay I wrote about us and PD entitled "Trembling Azalea") might be aware of a symptom and hope to conceal it and that she might be self-conscious about some symptoms.

Indeed, I now recall Azalea saying that she was self-conscious when meeting a couple of my acquaintances for the first time. Even though, on those occasions, her tremors were barely noticeable. The point is that she was aware of them.

As for concealing symptoms, perhaps Azalea is trying to shield me from some things so that I don't overreact. In fact, once in a while I hear more about her symptoms when she is on the phone to a friend!

Thanks for the fresh perspective.

By NW_Raven On 2010.11.05 14:08
Thanks EMMA for your pertinent suggestions: to keep a log of changes that I notice, and to establish a direct line of communication with Azalea's neurologist.

I already keep a personal daytimer/diary, so I'll just write notes on changing symptoms in there. Until now, I hadn't gone to the neurologist (at a highly specialized Parkinsons Research Centre at a nearby major university) with Azalea--her mother insisted on having that privilege. However, we discussed this and Azalea surprised me by saying she would like me to go with her. Unfortunately, her appointments are at 6-month intervals. She sees a great naturopath every week and a physiotherapist when she needs to.

Azalea is 53 and I am younger, so you can imagine why I am seeking the benefit of this forum's experience and collective wisdom.

By NW_Raven On 2010.11.05 14:40
It is interesting, SARAKAYHATCH, that you noticed so many symptoms in your husband before he was diagnosed with PD. And that you already have a line of communication with the doctors, as EMMA suggested to me.

In my wife's case, she lost her sense of smell about 4 years ago. This was one of her first symptoms, we realize now. Unfortunately, the children and I made a little fun of her for it. Not any more.

I was interested to hear your description subtle changes in your husband's cognitive functions. These are the kind of changes that worry me the most, mainly because they increase that gap between my wife and I. That may be the subject of a future post on my part.

By parkinit On 2010.11.14 22:19
NW Raven -

Your role will change, most surely, but also, in my spouse's case, he doesn't like me to point out his declining health. I, like others here have mentioned, communicate ahead of appointments with the doctor to bring him up-to-date on my perceptions. I find more and more they rely on my perception rather than my spouse's as it may be different from mine. He perceives he should be able to drive even though he swerves over the line and cannot even drive a powerchair through the house without scraping the walls and taking out furniture. He doesn't see that he gets extremely stressed about changes in his routine or even getting out of the house for any length of time. I don't bring this to his attention, but I see these changes. It is difficult to change roles in a marriage, but it slowly happens with time and the progression of the disease.

By oshroshr On 2010.11.26 23:05
I have been reading the posts about changes. Am I getting it right that what I see is not what the pd patient sees. My husband will tell me he is doing better while I am percieving something totally different.

We have been in this at least 5 solid years diagnosed but years longer going to all kinds of doctors to figure out what was initially happening. Hind sight is 20/20. I am also scared of the future because as things change, I feel the role change that others mention.
Is it good to push a PD patient to do things they seem to want to do? Seems like this becomes more and more of an issue.
I am quite afraid that I will not be ready for the inevitable changes that will require more help because I see this coming but do not know when or how soon?
I have read the stages in different sources but can anyone offer an idea of how to know where one is in the stages. Sorry I am rambling but reading all of the posts helps me clarify what is causing my fear. Happy to hear from you

By lurkingforacure On 2010.11.26 23:18
This is interesting to me because I have the opposite situation. I am my husband's cheerleader, always telling him how good he looks, doing so well, etc., and he always dismisses me and tells me I'm wrong, he's not doing well at all, drugs aren't working, etc. I guess he thinks everyone sees him as he feels, so since he feels so crappy, he thinks he must look that way too.

I guess I am grateful that I do not have this problem yet. I've always been the "half full" person and he is definitely the "half empty" perceiver. Maybe that has something to do with it.

By Emma On 2010.11.27 05:01
oshroshr, I understand your concerns and I'm very sorry if some of our posts have caused you to worry. Remember that Parkinson's is different for everyone and your husband may never experience some of the things you read about here. I often encounter discussions on this board about symptoms we have never had to deal with. I file the information away in my mind for future reference, just in case, but I don't dwell on it because I know that it may never happen.

The "stages" are not set in stone, they are just a guideline based on research showing that in general this is how people with PD progress. However, in real life no one has Parkinson's "in general", it is different and specific to each individual. For instance, my husband has been diagnosed for about 10 years (and has had it much longer than that) and has never had tremors, which many people think of as the hallmark of Parkinson's. On the other hand he has had dementia almost from the start. There are others on this board, I'm thinking of Lohengrin, who have had Parkinson's much longer and do not have one iota of anything that looks like dementia but deal daily with the frustrations of tremoring. Two different men, both with Parkinson's but experiencing it in completely different ways.

Fortunately, changes usually happen gradually and we just incorporate them into our lives and routine. It's highly unlikely that your husband will be in say stage 2 and suddenly wake up in stage 4. It's amazing how adaptable we human beings are. With this disease we are all, patient and caregiver, continually learning to live with a new reality. It's not easy, that's why there are boards like this. Take each day as it comes and do the best you can. That's all anyone can ask.

By karolinakitty On 2010.11.27 08:30
oshroshr... As Emma so eloquently said there is nothing "general" about it. My guy like Emma's has very few outward tremors, mine also has dementia, but, while his dementia is mild, he still deals with not being able to work. This was extremely hard on him as he was one who worked, at times, almost 80hours a week. He was an awesome chef that can't make cookies from a recipe now. However, he needed something to do, he couldn't just sit still or watch tv. He doesn't like movies and has to be outdoors all the time. We have made some changes so he can do almost anything he wants, with me lurking in the shadows.
He "supes" up little red wagons and passes them on to young children. This involves the use of many different power tools. Our #1 rule is safety, we want no fingers lost on top of anything else. We, yes, the both of us, have made up rules together to avoid any issues. He knows my concerns and i understand his feelings about being supervised like a child. We met in the middle and so far so good. I do keep a watchful eye if just from a distance.
I have to worry on the inside but not show it as i want him to feel as whole as he can.
We can't compare one to another here as far as stages, as Emma said they are just guidelines. If i followed them, i would really be confused, just the as docs are to put a label on just what Plus disease he has. He has symptoms of all, but not all of one, they put him in LBD(Lewy Body Disease) for insurance purposes as he said. I could put him at stage 4 and almost 5 for some of the issues he has but yet he has no issues in some of the other stages.
He has swallowing issues, yet is not incontinent. I have to help him dress, but he can take his own shower.
We recently have lovingly referred to it as Jim's PD so because he is so different than the stages and the plus diseases themselves.
It's frustrating because at least with other diseases, like cancer for example, you can pinpoint one thing, like brain skin cancer or colon cancer. you can't do that with PD because it effects the receptors in the brain, each persons brain and personality go with that, it's off the charts.
The best thing, i feel, to do, is learn and hold it all for later use. kind of a reference library, keep al kinds of info but only pull it out when you need it.

By oshroshr On 2010.11.27 22:43
Thank you all for the kind responses. I just want to be prepared. Today we tried to Christmas shop but he has such a hard time walking. Really needs a scooter or something like that. It wipes him out. Our house would not accomodate a scooter at all so I just keep thinking I should be doing some thing to get ready for the next stage etc. He does have the tremor and it can be sporadically bad but then can calm for awhile. Really had this year before the diagnosis too so I guess we are in the 8th or more year in reality. Thanks again.

By LOHENGR1N On 2010.11.28 01:31
oshroshr, The underlying Disease starts way before symptoms become visible and diagnosis can be made. They say between 60% to 80% of the dopamine producing cells in the Substantia nigra have died before symptoms begin to show. So We all really have had it for quite some time before diagnosis. To try to pinpoint exactly when it started is next to impossible. With that much loss we're all doing remarkably well if you figure we're operating on 40% or less of these cells. Take care, best of luck and hang in there.

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