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Topic Variation in early-stage PWP's energy levels? Go to previous topic Go to next topic Go to higher level

By NW_Raven On 2010.12.07 15:50
Is a variation in energy level over a cycle of several days a potential symptom?

My wife, 53, was diagnosed two years ago, although we now realize that she had PD symptoms for a few years before that. She has tremors on the left side, including at night, and her left arm is drawn up, painful, and hard to use. Her walk has changed and she is less expressive than before.
In all other respects she is fit and healthy. She is not taking any medications yet, although she has said she would like to start soon.

Over the last couple of months I have noticed that she seems to go through periods of several days where she is unusually upbeat and capable. Then, suddenly, she will go through a period where she gets tired early and she is prone to anxiety and, it seems to me, less capable of handling any kind of change or stress. During these periods, I tread carefully because some otherwise small thing might get her upset, even angry.

I know this may be a small thing to many of you whom are grappling with much larger issues. However, for someone new in the care provider role, these cycles are important for me to understand. Especially since the low periods she sometimes behaves in ways that make me feel that, in a subtle way, I am talking to someone different.

The first few times this occurred, it upset me. To the point that I worry who I will find when I come home from work. Now, I pull back a bit and just try to find a calm and reassuring way through the difficulty.

Since I havenít read anything about these cycles in the literature, I was wondering if anyone could offer some insight.

By packerman On 2010.12.07 17:55
my husband (53) is bipolar as well as a PD'er. he has experienced highs & lows for many years. we did not understand it well until he was diagnosed (2007). try looking up info on bipolar (www.dbsalliance.org is a national support organization) and see if that sounds similar to what she is experiencing.
good luck!
Pat

By Michele On 2010.12.07 18:02
Dear NW. Welcome to our forum. This is not a small thing. It sounds like your wife is going through periods of depression which is very common in PD. If her "unusually upbeat" periods are different than you have seen before they could be manic periods. If this is the case, she could be experiencing Bipolar episodes. It's hard to tell if depression comes from neurological changes caused by PD, situational causes from the losses she is experiencing, or both. Depression can bring on anxiety, feeling overwhelmed, being unable to cope and irritability and anger. This is something for you both to discuss and bring up with your neuro. Is she aware of these changes in mood? Emotional and mental changes that come along with PD are just as harad to cope with than the physical changes - sometimes harder. I'm sure you will get many other insightful responses and that you will find your way through this maze. Hugs to you and your wife.

By Michele On 2010.12.07 18:03
p.s. depression also causes decreased energy and fatigue.

By oshroshr On 2010.12.07 18:58
what you are describing is exactly what I experienced as my husband moves through the progression of the disease. Sometimes when I try hardest I find myself being really annoying to him. We also are well into the fact that there were a number of years prior to official diagnosis.

He started Mirapex a year ago now and that has helped but it comes with many side effects. You will find on the posts that I am always asking for how to know what stage and where we are in the disease. There appears to be no answer. Wanting to be prepared for what might be coming is very frustrating.

By LOHENGR1N On 2010.12.07 19:45

NW_Raven, Michele is right, You and Your wife should discuss this with Her Neurologist. Bipolarity is caused by wildly fluctuating dopamine levels. Too much dopamine results in the manic behavior, Too little and depression. When treating mania by suppressing dopamine levels Parkinson's symptoms can occur (these symptoms are reversible by stopping the medicine lowering the dopamine levels). Perhaps it is time to start on some medication for Parkinson's. Your description doesn't have her bouncing off walls or full blown manic actions, but unusually upbeat. As we know the underlying disease is present for years before symptoms occur visible or pronounced enough for diagnosis. Along with this subtle changes are going on. Looking back we can say I bet this action or event was Parkinson's and we didn't know it at the time. So with a gradual decline our "upbeat moods" become less noticeable. BUT, with depressed moods the comparison is markedly plain. She may be at the cusp of needing medicine to supplement the dopamine being produced by her brain. Some days it's enough others it isn't, this should be discussed with the Neurologist so they can make a judgement call wither to give med's a try or if something else may work. With Your Wife saying she might like to start med's soon perhaps She's sensing something out of whack and a need to be proactive correcting it? I don't know, I don't know if I've been clear in this ........another way one can think of what's going on is a car (your brain) you've got a full tank of gas (dopamine) but there's water (Parkinson's Disease) in it. Now you go along and it starts to buck, misfire even stall. Not at all like the car you're use to. You restart it and it runs along ok for a bit then bucking, spitting again. What the heck? You restart and it's running fine until .....now it's getting to be a problem so you go to the mechanic (Neurologist) tell them what's happening. Here...they hand you a can of dry gas (medicine) to smooth out the water (lack of dopamine). I hope I've helped with what might be happening. Take care, best of luck and hang in there.

BTW, like the screen name.

"If men had wings and bore black feathers, few of them would be clever enough to be Crows"
___Rev. Henry Ward Beacher (Mid 1800's)____

By oshroshr On 2010.12.07 19:56
Lonhegrin,

always wonder what my husband "sees" while I am seeing him and the outward signs of his PD.
Can you tell me if he sees what I see?
Also, thanks for the many responses and you do it so well.
I now sometimes get overwhelmed especially when I have to try to wake up my husband from those sudden deep sleeps or when he suddenly is sleeping with his head hanging in a precarious position. So afraid he will get hurt.
Me him when he was 16 and he is now 65. Thanks and your insight is priceless

By LOHENGR1N On 2010.12.08 00:47
oshroshr, You ask a hard question. I can't answer what your Husband "sees". I can guess from my view the patients view. While you are "seeing" the outward signs He can "see" the worry or concern on your face. When you "see" him having a hard time fumbling or clumsily attempting a task, he can "see" his hands and fingers ignoring signals they once automatically obeyed, which now must be willed and concentrated on to get them to work. And probably, He can "see" more, when patients stop doing things they once enjoyed many people will "see" apathy, depression, lack of interest. They very well may be right but the patient just might "see" the problems of time and effort involved and judge it not worth the exertion. There is a wonderful site which explains some of these things the Woman who wrote it has Lupus but it does well explaining living with a disease. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-misercandino/
It's worth a click, I had a longer response written but closing some windows my mouse somehow got quicker and a fast tremor clicked no on did I want to save it so presto it went! Oh well....I do get long winded at times so maybe it was for the best. You hang in there my friend and keep posting and asking. Take care, best of luck and hang in there.
.....the link doesn't work very well but if you click on the banner ...the spoon theory, then scroll down and click on The Spoon Theory Written by Christine Miserandino it will bring you there.

By Michele On 2010.12.08 18:18
Hi LO, I love our analogy about the gas tank of a car, water and PD. It's a guy thing but something I can relate to and understand.

By oshroshr On 2010.12.08 22:17
I will try the link and I cannot express enough how much I appreciate your time and help in your answer.

By NW_Raven On 2010.12.09 13:09
Thanks so much for the considered responses.

While I was aware of the possibility of depression, I thought it would come in larger and longer episodes. So I guess I had discounted that.

Also, Michele pointed out some potential causes of depression that I hadnít considered, such as the losses my wife is experiencing. Although the points about bipolarity are valid, I am not sure that my wife is close to that. Although as PD progresses, I will keep an eye on it. LOHENG1N makes a good point that her desire to go on meds might be an acknowledgement on her part of deeper changes of which I may not be yet aware.

Unfortunately, I havenít had the courage to discuss these emotional and mental changes with my wife. The only thing we have managed to do is discover and acknowledge that our relationship is changing because of PD. Since that was an extremely difficult process for us, I am wary of going farther down that road. Fortunately, we have a strong non-verbal connection that seems to be serving us well.

LO: Glad you like the screen name. It is significant: A raven has a voice that carries and it is known to be loyal.

By parkinit On 2010.12.12 10:15
I just had some time to truly contemplate this post. My spouse has contrasting periods (they are fewer are farther between now that the PD has progressed) of his normal energetic self countered with longer periods of rest (desk work usually in his case) that may or may not be accompanied with extreme anxiety.

When you mentioned the anxiety, it made me realize that I, too, can also tell whem my spouse is easily agitated and anxious as there is a certain panicked "look" I see in his eyes. I know to stay close and be as passive and helpful as possible when I see this look. It appears that mentally, he is in a state of panic and yes, I see fear, too. "Stressors" appear to aggravate and aggitate this condition.

So, in reflection, I suppose, trained in Pavlov way, I tended to "learn" what worked and what didn't for us based on the positive results:

1. Keep stressors low (this is difficult as Christmas time is a stressor).
2. Stay home more.
3. Keep a low-key routine
4. Allow time for rest periods throughout the day.
5. Slowly begin taking over more responsibilities without causing spousal stress or alarm (this is the tricky one).

By NW_Raven On 2010.12.13 16:07
That last point (#5) is indeed the tricky one: how to take over responsibility for something without alarming the PWP.

In my case, with my wife in the early stages, she may not be aware of her diminished ability, or may not be prepared to acknowledge it. So to have me suggest that I do something that she would normally do can trigger anxiety and maybe even resistance.

So I have just gone about making preparations behind the scenes, such as with banking and shopping, with the idea that when she asks for help or it is clear to everyone that she can't have the responsibility I will be ready. Still, it is not an easy balancing act.

By NW_Raven On 2011.01.04 13:32
Over the holidays, more has happened so Iíd like to re-open this discussion. In fact, my wifeís most recent episode has really thrown me.

Sailing along through the holidays, with the kids home for a visit and lots of family gatherings, I noticed that my wife would get tired quicker than normal and was much less expressive and involved in social situations. She volunteered that her shaking made her self-conscious. Several times I found her sitting close to me on the couch for long periods when in past years she would be up and around with her sisters. Also, when at rest, she is inexpressive. I stay aware of her energy level so we donít venture much after about 9:30 pm and leave social functions sooner.

Twice in this period of a few weeks, both when she was tired of course, she had an episode of anxiety. The trigger seems to be our differing perception of her condition (she feels she is stable, I see changes and effects, not all of which I feel I can share with her) and its effect on our relationship (my changing role and slight separation that seems to come with it). She gets even more upset because, she says, everything seems to be great and she feels she is coping and then it all seems to not be. She has also said in a dark moment: "I feel I am doing well, but maybe I am deluding myself".

Even though I try to work calmly with her through these issues, she gets extremely despondent and struggled to express herself. Both times, I did my best (using all the strength and patience I could muster) and within 48 hours she re-emerged feeling more comfortable and calm and assured, sometimes as if nothing serious had just occurred. Then we resume our normal close and caring relationship.

These episodes upset me because I think the PD is partly to blame for these bouts of anxiety. In a desperate moment, I actually put that possibility to her. She disagreed. She thinks itís just that she feels insecure because of having PD. So my challenge is that I think she canít see what I think are early cognitive effects of PD on her. I donít force the issue for obvious reasons, but the result is that I feel VERY lonely and embattled, even when things are good. Is there denial going on here? Am I reading too much into things? I value your thoughts.

BTW: Another event shocked me into thinking the PD is having cognitive effects. When we drove upcountry to visit relatives, she offered to drive the first leg out of the city, even though she generally doesnít like driving. During the hour and a half at the wheel on a moderately busy freeway she has driven before, I realized that she seemed very stressed Ė even overwhelmed. We even swerved dangerously a couple of times. Her face was like a mask and she avoided using her affected left hand on the wheel. I gently asked once if she would like me to take over but she insisted on going the whole stretch.

By rmshea On 2011.01.04 13:44
We are grateful our mom/mil no longer drives! We find ourselves in a battle with her over how disabled/affected PD is making her. Her face is a mask as well. She insists that she asked for no help, doesn't want it, and is indifferent to eating, drinking, taking her meds on time because she feels 'fine'. Yet our observations are, she cannot get out of a car w/o help, she falls, she can barely move, is extremely depressed and tasks with more than one aspect to them confound her. I don't know if it's denial, her absence of pain, but she now believes all of us are looking for reasons to 'put her away' as she calls it. BTW, she still lives alone in an apt. We have caregiver help 3x a week, soon to increase. From what I've been reading and learning here and at npf.org, PD definitely affects cognition, but our mom/mil's self awareness is zippo in my experience. We just do a lot of re-assurance and quiet support; to argue is useless. To say that it is wearisome on the caregiver is a vast understatement. If there is one available, going to a PD support group would be helpful for you and family members even if the PDr doesn't want to.

By karolinakitty On 2011.01.04 14:27
Raven... Masking is a part of PD, they seem expressionless and uninterested, it is something they can't overcome. Your wife seems to have self esteem issues because of her tremors, i would maybe discuss this with her doc, as this seems to be leading to depression with her. I am not a doctor or medical professional, but it seems that way. One suggestion I have is maybe asking the doc about Cymbalta, we recently started on it for pain, however, it is used for depression also. My guy says it makes him feel real mellow and laid back, but so far (2 weeks) no bad side effects or other drug interactions. He had a few days of nausea, but that has ceased.
I'm not big on support groups, but maybe if she could find another woman with PD, they could talk about their issues in a more open way, and know they won't be stared at for shaking or losing words, or not being able to say what they really mean.....
Cognitive issues in some PD patients are normal, some have straight out dementia and others seem to stand on the outskirts for a period of time. Losing words, not being able to convey thoughts could be early signs. Trust me, this doesn't mean she'll not know you in a month it just means something is maybe starting, and getting her on Excelon/Aricept may help.
Our last visit, he had a very good memory test, best he's had yet. His words still aren't coming as best as he would like it, but they are better. There are still things he loses, time is a big one. He may think it's only 10am when it's really 3pm. He doesn't realize how long it takes for him to do things as he gets "lost" in the process. I am blessed that he doesn't take my observations the wrong way. He wants me to let him know if i see things out of place for him.
Sometimes, we as caregivers, need to step back from the diagnosing and let them be too. We so want to help with everything and make things go smoothly that we sometimes forget we need to let them just be, for a time......

By NW_Raven On 2011.01.04 14:58
To help myself, I write haiku (short poems). Here is one on this subject:

--------------
Diseaseís chasm
Spanned by tendrils of hope and
Unspoken feeling
--------------

I share some of these with my wife and it helps us. I have more I can share with this forum, if anyone is interested.

By LOHENGR1N On 2011.01.04 16:25
Raven, Your Wife is still learning to adapt to Her condition. (Believe me when I say it is a ongoing adaptation). Yes masking is often mistaken for loss of interest in things, loss of the person struggling inside to cope with what is going on. We have to be careful not to read too much into masking. Masking is something we can't control and many mistake our inability to convey expressions as stoic or distant or not caring anymore. It isn't it's masking and yes we can see the looks of disappointment or alarm on the faces of others. We're still here but can't react as we did prior to P.D. (some anti-parkinson's meds will help with masking).

As for anxiety this could be Parkinson's related from our chemical levels in our brain being unbalanced. Run these concerns by the Neurologist and see what they suggest.

The driving is tricky I gave it up because my reactions were slowing to the extant of my becoming a danger to myself and others. Some fight to keep driving even past this point. I will give your Wife credit for resisting using her effected hand on the wheel. She was wise and adapting to her situation doing this. Just think about it or try a little experiment take a pen or pencil hold one end by your fingers and move it so the tip lowers a little not much just a little. Now get a yard stick or fishing pole, hold it, now move it just a little just like the pen. Notice how far the tip moves? A lot more because of its distance from your hand. Substitute the car steering wheel move it a little, nothing much happens right, ok step on the gas so the car goes faster....move the wheel a little....now the car swerves...you're going faster covering more distance so the tremor has greater effect on controlling the car.

Both of you are doing ok by the sounds, your concerns are valid and normal. One of the hardest things to do is to not jump to a worse case scenario. We read about what could happen then tend to overly watch for that to surface (this is just our human nature to do it) We have to try to learn to not panic if something arises and to stay calm and reason it out. Again you both sound like you're finding your way through and over events. We're all here for you, keep posting and we'll all try to help sort stuff out with you. Take care, best of luck and hang in there.

By Emma On 2011.01.04 17:10
Raven, As both KK and Lohengren have said the masking is part of the Parkinson's and is not a reflection of her mood or feelings. Both anxiety and depression can be part of Parkinson's as well. For about a year before he was diagnosed with PD my husband went through a terrible bout with both. Sometimes I dreaded going home from work because I didn't know which husband I would find when I got there. Both eventually went away, or at least are at a kind of normal level now (after all, we all get depressed and/or anxious from time to time).

I too have found that my husband is not as social anymore as he used to be, even with family. He does much better one on one than in crowds. I think the chatter and activity is hard for him to follow and keep up with because he processes things more slowly than he used to. I'm sure that part of it is also that he wants to appear as "normal" as possible to others so he avoids things that will give him away so to speak. He tends to just sit in his chair at family gatherings and wait for people to come to him. He is more comfortable that way so everyone makes a point of stopping by his chair to chat with him individually.

Driving is a tough one. We wrestled with it for over a year before my husband agreed to give it up. He tended to swerve a lot too and also to just drift into the other lane. I won't even mention all the dings and scratches on the car and garage door frame. It's something to keep your eye on.

Keep posting, keep asking questions. We have all been where you are and will do our best to help and reassure.

By sharons On 2011.01.04 20:29
Raven - Has your wife possibly started menopause? As soon as I saw her age when reading your original post, that was the first thought that came to my mind. I know this would not explain everything that is going on, but speaking from experience, many changes happen due to the hormonal changes when a woman gets to this point in her life. The mood changes and even the masking might be symptoms of hormonal imbalances. Being diagnosed with PD around the same time she could be going into menopause is a double whammy. I also think a certain level of depression happens to some women at that time in their lives. Just a thought.

By care4loved1 On 2011.01.04 23:00
Raven, you have hit the nail on the head for many things that my husband is going through that your wife is also. As of the past year we have cut down on social gatherings more than half of what we have done in the past. His energy Level is way down regardless of how much exercise he gets. His arms and legs are in a lot of pain also. Another thing is one day he will seem like himself and the next day it feels like he is a stranger to me. He completely is a different person. Thinks differently and acts differently. I try very hard to be patient but as you can relate Is sometimes hard to do. That is a big part of this disease that is so very frustrating to me. Because each day brings new challenges and it is hard to know how to react to many of them. I know that my husband as well as anyone with PD does not want to hear that their thought process Is not what it used to be. It is a very delicate situation. I am praying for you as well as everyone who is affected by this disease.

By karolinakitty On 2011.01.05 11:05
Raven... love haiku and short stories.... post them when you feel free to....

ps... maybe in non-caregiver topic.. start a whole post just for your poems.. that would be nice.....

By NW_Raven On 2011.01.05 13:28
Thanks for your interest, kitty. I have put up a small blog on which to post my PD-related writings: http://ravensvoyage.wordpress.com/.

There is an essay and some haiku. I find it cathartic to write such things, both good and bad. Once in a while, I post something new. I hope the words might be helpful to other care partners.

By karolinakitty On 2011.01.05 13:52
I bookmarked it Raven.... great writing!

By Emma On 2011.01.06 04:50
Thanks for the link Raven!

By NW_Raven On 2011.01.06 17:47
Thank you everyone for the valuable responses to my questions. You gave me some fresh things to consider and some reassurance that my observations had some import.

The potential interference of menopause I have discounted because she has finished, but that doesnít rule out some post-menopausal depression I suppose. Her menopausal symptoms were never severe. As for anxiety, I understand now that I absolutely must accompany her on her next visit to the neurologist in April. But how do I go about presenting my observations to the neurologist without upsetting her? I have read that I have to set up my own line of communications with her doctors. But how: openly or privately?

One outcome of the most recent crisis is that we have agreed to share more about her symptoms with each other, even Ėshe says Ė if we have to agree to disagree about them. I am happy with that, but it still leaves me reluctant to tell her of cognitive problems I might observe. I guess I just have to proceed in the spirit of sharing and be as tactful as I can when necessary. Thank you for the reminders about masking. It is so easy for a novice such as I to misinterpret. The driving problems, on the other hand, are much easier to see. Iíll keep an eye on that.

On the bright side, my wife has swung back quite quickly to an upbeat frame of mind. Indeed, she has thanked me for my patience and caring (!). One positive outcome from our recent crises is that that she is more aware of her PDís affect on me. Another is that I am trying to not look too far ahead and instead just observe what is happening now. All very complicated for novices, isnít it?

By packerman On 2011.01.06 18:09
I e-mail my hubby's MDS directly. he doesn't mind and will e-mail me back.
he often indirectly mentions my concerns at the next visit.
he is at a major teaching hospital and we've been seeing him for 10 years or so.
I guess we're lucky that way.
Pat

By parkinit On 2011.01.09 13:58
NW_Raven -
You find out these little facets of PD in bits and pieces and it is like putting a puzzle together, isn't it?

My spouse is "my rock" - normally, he is a strong, confident man, but he, too, suffers bouts of anxiety. We both love to be social and do things in the community, but we have learned to reevaluate our schedule and if we "go out" (of the house) more than once in the day, we have found that is too taxing for him and can become either tiring, stressful, or potentially cause a bout of anxiety (I'm not really sure he is aware of this as much as I am).

He was up all night, doing the late night snacking and making a mess last night while I, exhausted, slept 10.5 hours. I woke up with popcorn all over our bedroom floor and the blueberry and apple juices poured into the same container with overflow juice making a sticky mess on the kitchen counter top. He remembers doing some of this, but not all.

PD is a tough disease to understand and just about the time I think I may have it/him figured out, something new crops up.

He is sleeping now after an exhausting, bear-like kitchen rampage last night!

By NW_Raven On 2011.01.31 12:53
Just wanted to follow up and report a kind a resolution to this long topic thread.

Finally, my wife and I got to see a social worker and the PD clinic at the university hospital. The woman specializes in counseling patients and caregivers dealing with neurological diseases. She was very good. After my wife and I talked our issues through with her, we took much of her advice and came up with the following approach:

1. When I observe new or changed PD symptoms in my wife, I will only point them out after assessing the impact of those symptoms on our lives. If a symptom is significant or dangerous, I would mention it; for example, difficulty driving in heavy traffic, or getting lost. If a symptom has little impact, I would note it, compensate as best I can, and not mention it; for example, if my wife tires earlier at social events, slows down on the field hockey pitch, or shakes heavily when in a stressful conversation (all true). If a symptom is somewhere in the middle, I would use my judgement; for example, if my wife stoops when walking I might mention it because she feels that she can correct it if she is aware, or if she speaks too softly around the house, I just casually ask her to say it again (and not mention it).

2. Before visiting the neurologist, my wife and I will go over all of the symptoms and changes she and I have observed and plan to report. We may disagree on some, but there will be no surprises at the doctorís office. The social worker emphasized that the doctors want to hear the care partnerís independent observations.

3. We will share all communications with the neurologist. This is significant regarding medications.

Having this approach in place, is a relief to me. But, as you can imagine, arriving at this point involved a lot of anxiety, heart-wrenching discussion, and soul searching. The social worker made a point of supporting my feeling that I could not share everything I observed, especially the cognitive symptoms. For her part, my wife had a very difficult time accepting that any cognitive disruptions were possible at all. But she eventually acknowledged the potential side effects of the looming medications.

I suppose I am lucky, because her general health is excellent and she has an optimistic nature and a stoic, non-complaining demeanor. Letís hope we can stay on a peaceful and healthy path.


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