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#1 Annette_F

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Posted 23 February 2011 - 04:41 PM

Hi Everyone,

I am wife to a wonderful husband who was diagnosed with PD four years ago. Until now, I have not reached out to the PD community at all, and have been dealing with things alone. However, I am feeling increasingly lonely in this journey, and I am hoping someone out there will respond and assure me that I am not totally alone.

I am at an odd stage of life, it seems. DH was diagnosed at age 55 and is now 59. I am currently 47, and our sons are 13 and 15, respectively. So, I have two teenage boys -- which means I need a support group just for that arena of my life! -- and a husband with PD.

Unlike some of the other husbands mentioned in this thread, my DH has been very good about seeking medical help. Indeed, I believe we got him to the doctors pretty early, b/c our first diagnosis was for Parkinsonism rather than PD. It took a couple years for the neurologists to feel comfortable with the PD diagnosis. And there is one neurologist we see, a vascular neurologist, who insists that DH does not have PD but rather has had some small strokes. However, IMO he definitely has PD because of all the symptoms:

- slurred speech
- very soft voice
- stiffness
- balance issues
- difficulty turning over in bed, getting out of bed, getting up out of chair
- festinated walk
- hunched posture
- slow processing time
- forgetfulness (this is recent)

So, at this point in my life, I am the only one working, I am trying to raise two teenage boys, and DH has declined in the last three months, especially with his walking. I am contemplating quitting my job so that I can be at home full time. I will be meeting with a financial advisor next Monday to go over our finances and see whether that is a viable option.

Edited by Annette_F, 23 February 2011 - 09:59 PM.


#2 Annette_F

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Posted 23 February 2011 - 04:53 PM

Ooops... Seems I posted my missive before I was quite done.

Anyway, to finish up, here's where I at emotionally, and here's where I would love some feedback. Just a quick line from anyone who is a caregiver or a PWP to just say they get it. My friends just don't understand. In fact, when they see DH, it's usually when he's at his best -- he's on his meds, he's had a fair amount of caffeine (which he uses to self-medicate), he's loose and walking okay -- and so they all tell me after the fact, "Oh, I saw your husband yesterday and he looked great!" And then I think to myself, "What are you talking about? He fell down last night, he's crashing into walls and furniture all the time, I can't understand him when he talks, and he literally falls backwards into a chair when he sits down. Plus, he left the stove on twice in the past week." It's almost as if I am wearing a blue sweater, and people keep coming up to me and saying, "Annette, that is a really pretty red sweater," or "Red is your color -- love the sweater" and I'm looking in the mirror and seeing blue. In other words, I see one thing, which is DH at home, especially in the mornings and evenings, and the world sees something else, which is DH at his best midday, and so what they report and what I see are two entirely different things.

Fortunately -- and thank my lucky stars for this -- I have a very close friend who is a psychologist. And -- get this! -- she works primarily with PWP and patients with Alzheimers, as well as their families. Currently in her private practice she treats six different families who are dealing with PD. So that means that she does indeed get what is going on. But, she said to me over the weekend, "Annette, I cannot be your support group." This is because I always call her every time something happens or I'm feeling crazy or whatever, and I now realize it's not really fair to her to be calling on her professional expertise when she's just a friend and when there are other resources available.

So the other thing that is going on is this issue of whether I should stop working or not. There's not any one thing I can point to, but I just want to be home. I want to be home when my boys get home from school so that they can have one "normal" parent around. I want to keep an eye on things because DH, who is still driving and doing much of the shopping still, is getting more forgetful and, frankly, I don't know how much longer he'll be able to drive. I don't think he'll need to quit tomorrow, but his next test with the DMV is September.

Finally, I am really worried about how bad DH's fenestrated walk has gotten, especially in the mornings and the evenings. (Oh, on a totally different note, I forgot to mention that DH does NOT have any sign of a tremor yet. Just bradykinesia, fenestrated walk, memory stuff, stiffness and balance problems.) And we have all four bedrooms upstairs. He almost fell down the stairs last week while just walking in the upstairs hallway, because he couldn't stop himself. So that's the other thing I'm grappling with -- do we move to a single level home? Do we put up a baby gate?

And what do I do about my kids? I try to talk to them about it, to broach the topic and let them know that they can talk to me anytime they want. However, they always say, "Mom, you always try to talk to us about this. Nothing is wrong. Dad seems fine. What are you talking about?" These comments, naturally, make me feel crazier still (back to the old blue sweater / red sweater metaphor).

Anyway, sorry for prattling on so long, but if anyone has feedback, even if it's just "I get it" or "Hang in there, girl" I will be appreciative.

Oh and one final (and I do mean final this time) question: Does anyone attend a PD support group in their community? I see that there are two fairly close to my home in Orange County, CA. I'm wondering what feedback folks have with respect to attending these.

Thanks,

Annette

#3 Guest_TexasT_*

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Posted 23 February 2011 - 05:05 PM

Dear Annette(which happens to be my middle name),

I get it!

I read everything you wrote and I do get it. More than that, my family gets it. My children are 15 and 11; I'm 43; my husband is worried sick, as are my parents.
I'm struggling to write this, literally. So, it will have to be all for now.
You are not alone.
So, like many people around here say, "Keep your chin up". That doesn't mean suck it up and deal with it. That means you have support here.

Prayers and best wishes for now,
Tonya

#4 Annette_F

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Posted 23 February 2011 - 05:16 PM

Dear Tonya,

Yes, I would imagine you do get it, with your kids being so young. Do you have boys or girls or both?

How long have you had your diagnosis? What are you symptoms? How do you cope?

Good luck to you, and thanks so much for your reply. I feel less alone already.

Annette

#5 Guest_TexasT_*

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Posted 23 February 2011 - 05:26 PM

Dear Tonya,

Yes, I would imagine you do get it, with your kids being so young. Do you have boys or girls or both?

How long have you had your diagnosis? What are you symptoms? How do you cope?

Good luck to you, and thanks so much for your reply. I feel less alone already.

Annette


I'll reply to all your questions when my meds are working well. Lately, it's about an hr a day. There's a reason behind the small window of opportunity.

Tonya

#6 Annette_F

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Posted 23 February 2011 - 05:39 PM

I'll reply to all your questions when my meds are working well. Lately, it's about an hr a day. There's a reason behind the small window of opportunity.

Tonya

Dear Tonya,

That's fine. Whenever you can get to it. And, I also imagine that you need to reserve your good periods for your family as well.

Be well, and I hope today improves for you. I'm off to a work appointment.

Hugs,
Annette

#7 KiminJapan

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Posted 24 February 2011 - 02:15 AM

I am a 45 yo PWP, mother to a 13 year old girl. I get what you are saying. Prior to a correct diagnosis and medication I exhibited all the symptoms your husband does. At that time, my daughter was 10 - 12 and much to her great credit, picked up the slack in the housework, helped me dress, carried my water upstairs when I no longer could carry and move at the same time, and encouraged me daily to keep on doing what I could. At that point, none of us had any idea what was going on, but we just dealt with every day as it happened. She doesn't seem to be worse for the wear, but in fact, is much more grown up and empathetic and caring towards others than her friends. My Parkinson's may not be much fun, but lately I'm realizing that it's just not all bad, but some good is indeed coming out of it. Like the way my daughter is, like our relationship which is very close, like a newfound appreciation for the here and now.

In reading what you wrote, especially the part about people seeing him and commenting on how great he is doing...it sounds like he is having off time that is pretty dramatic. I have off time too, but it's not so bad that I'm unable to do anything. It doesn't touch where I was before medicine came into the equation. So I'm wondering if perhaps he needs his medication dosing and schedule adjusted to reduce the off time, especially to make it so he can be on at the times he needs to cook or navigate stairs. I'd consult with the neurologist about that. I just read a post on the Ask the Doctor section that talked about off time, and basically Dr. Okun said that PWP should not spare medication now and suffer with off time in hopes to save up the meds for the future, that that line of thinking is incorrect. I do know many doctors still follow that thought process, but many don't. My doctor has told me that he wants to medicate me to be as good as I can be (which is pretty close to perfect now), but not make me horribly dyskinetic or bothered by side effects. It's a delicate balance, that takes patience and finesse to find, and is different for everyone. I hope that perhaps your husband can find a place in treatment that gives him better control over his symptoms.

I also understand about your question of not working. My husband and I are both working now, but I know there will come I day when I can no longer work. That's hard on two levels, financial and emotional. When I have too much time off, I tend to get depressed from lack of purpose, nothing to do. Perhaps your husband is also feeling that way? And you, like my husband, have the burden of the family's financial future. I'm getting worried just writing this....

So, yeah, there are those of us here with teenagers, jobs, stress, worry. Caregivers and pwp, children, spouses. I don't know that it's been any help, but I hope you know that you can find support here.

#8 coacht

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Posted 24 February 2011 - 09:21 AM

Annette,
You are far from being alone. In fact it is quite crowded out there. I was just going to start a thread about the loneliness. It is for all of the reasons you mentioned. The cognitive problems in my DW are the most bothersome. Her physical symptoms can be dealt with and they are not as severe as your husbands. I said something to our lawyer who is also a good friend and he said that he doesn't see what I see for changes. Sound familiar. We have four kids and three are still at home and one in college. She has had symptoms for over nine years now including severe anxiety to begin with and it is still a problem now. They don't really know her any other way. They are very frustrated by her behavior and often it ends up being us against her to get things done or keep her under control when she is on a mission. She fixates on things and I call that her pitbull mode since she bites onto something and won't let go until she gets what she wants. She also was leaving the stove on and since she has been off the agonists that has helped. The neuropsychologist also told me that she is easily distracted and that you might think she is listening but she isn't. That has been a problem and more common lately as she hears half of what I said and turns it completely around at times. Maybe this is part of his forgetfullness at times. She also loses things, writes checks whether or not we have money and I have to parcel out check pads or she just grabs one and writes checks so I never know what is floating out there. She gets angry at me for this but I have to do it. This is just the tip of the iceberg.

I have been corresponding with other people form other message boards since the privante messaging here was just enabled here recently. It is all very frustrating and one good friend said that if you have seen one person with Parkinson's then you have seen one person with Parkinson's. They are all different. I went to a support group meeting a week ago. Most of the people there had had Parkinson's for just a few years and were in way worse shape than my DW. It was interesting and I guess it depends upon what the people there are like. I would suggest you go and try it. One dear friend I correspond with is really hurting now with the changes in her husband, so I am afraid you are in a crowded room.

I would also suggest that his meds be checked into. The agonists caused all sorts of problems and put an extreme strain on our marriage and family. I am not a big fan. the neurologist would not listen to me since she seemed so normal when she talked to him and sounded so reasonable until you document what is going on. Another friend had the diagnosis changed from PD to Parkisonianism, the opposite of you. Have him try to make an OK sign or a peace sign, or live long and prosper from star trek. If he is not able to do this, then it might not be Parkinson's and the drugs are making him worse. I would also look at a second opinion if this doctor won't listen, but of course your DH has to cooperate in that also.

Just a lot of rambling thoughts.

Coach T

#9 Annette_F

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Posted 24 February 2011 - 12:01 PM

Kimin,

Your daughter sounds wonderful. Loyal, thoughtful, kind and selfless. I wish I could say the same about my two teenage sons, raised in affluence here in Orange County, California. They seem to be somewhat oblivious to my husband's health issues.

Yes, I continue to be baffled about the dichotomy between what others see (or at least what they report) and what I see. I call it "bookends," where he is not doing great first thing in the morning or last thing at night. Of course, our friends don't see that part. Plus, I think he tries super hard when he's out in public, and he relaxes at home, so the impairment is more pronounced. I have to realize that perhaps these folks are just trying to be kind and supportive.

"I also understand about your question of not working. My husband and I are both working now, but I know there will come I day when I can no longer work. That's hard on two levels, financial and emotional. When I have too much time off, I tend to get depressed from lack of purpose, nothing to do. Perhaps your husband is also feeling that way? And you, like my husband, have the burden of the family's financial future. I'm getting worried just writing this...."

Don't worry, Kimin! It doesn't do any good. What I have seen here in my brief foray into this forum is that we have to just stay in the day. As more than one person has commented, we don't know what the future holds, and for all we know, we could be hit by a bus tomorrow!

So, yeah, there are those of us here with teenagers, jobs, stress, worry. Caregivers and pwp, children, spouses. I don't know that it's been any help, but I hope you know that you can find support here.

This has made me feel so much less alone. I originally thought PD was an older person's disease, and so that I was one of only a few with kids still at home. I see that I am wrong, that many PWP are young enough to still have minor children.

I am grateful that my husband takes his exercise regime so seriously; I believe that it has helped him retain much of his mobility. One thing I'll say about his festinating walk is that he has it pretty much every time he gets up from having been stationary for a while -- sitting or standing. But once he's walked a little bit and gotten himself oriented, then he's fine. So he's able to do many, many things.

Thanks, Kimin, for your kind words. I totally relate to what you said, and I look forward to getting to know you here on these boards.

Best,

Annette

#10 Annette_F

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Posted 24 February 2011 - 12:42 PM

Dear CoachT,

Thanks so much for your reply. You were not rambling at all! What I'm starting to realize is that PD is "messy." And what I mean by that is that it's different for everyone, and the effects on loved ones are complex, and dealing with medications and physical changes is confusing and... well, it's just not something you can summarize in a tidy paragraph or two. So, no you're not rambling, just being thorough.

"You are far from being alone. In fact it is quite crowded out there. I was just going to start a thread about the loneliness. It is for all of the reasons you mentioned."

I can't tell you how much less alone I feel today, just having had your response, as well as the responses from a couple other people. And also, I cruised around and read some other posts. Honestly, I had somehow thought I was the only spouse of PWP with teenagers in the entire world! Don't ask me why I thought that. LOL. I just haven't done a lot of research or really reached out to the PD community at all. I mean, we go to our neurologist, but that's about it. Frankly, my husband's symptoms were pretty mild for a few years, and so we just kind of tooled along doing our usual stuff. It's only recently that I'm starting to even perceive him as impaired. So (and now I'm the one rambling), I just never reached out to anyone. Specifically, I didn't want to go to a support group because I didn't want to see the progression of the disease. I wanted to stay ignorant so I wouldn't worry.

"The cognitive problems in my DW are the most bothersome. Her physical symptoms can be dealt with and they are not as severe as your husbands."

I don't know how severe my husban's symptoms are. It's hard to be objective. As I've said before, during midday, he's actually pretty good.

I'm very sorry to hear of your wife's psychological issues. That does sound very challenging. At times, my husband is forgetful, though this is relatively recent. And also, I feel he is somewhat cavalier about money, but it's not a big deal at this point in time.

CoachT, I will try to write more later, but I have some work stuff to take care of. I look forward to corresponding with you. Be well,

Annette

#11 spouseandmore

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Posted 22 March 2011 - 10:32 AM

Hi Everyone,


I am at an odd stage of life, it seems. DH was diagnosed at age 55 and is now 59. I am currently 47, and our sons are 13 and 15, respectively. So, I have two teenage boys -- which means I need a support group just for that arena of my life! -- and a husband with PD.


Annette,
Just so you know I feel your loneliness. I am sure that each one of us here feels that way at one point or another during this journey we must take. I am 47, my DH/PWP is 63 and we have a 3 yr. old girl. My DH is 10 years into his PD and I too have been coping with it all alone. There are days when he has his "good times" and is able to get outside and visit with the neighbors, and like your situation, they don't see those bad days when he can't even get out of bed. I used to go to school full time, but in the last year have "chosen" to postpone school for a while. I say chosen because I was trying to concentrate on school, taking care of my DH and the baby at the same time, and nothing was getting enough attention to do me or them any good. I refuse to put my DH in a living center, I feel like I am the only one who knows what he needs and wants on a daily basis. I help him bathe, dress, and get him into his wheelchair where he spends most of his day when he isn't sleeping. I have learned that it is best for my DH to stay on a routine where he gets up, takes his meds, eats, and at certain times during the day, he takes a nap. When he takes a nap, I do too. Seems to be the only time I get any rest. Sure the house work may lack and the dishes may pile up, but those things "MUST" take a second seat to my family and that is life. Don't try to be a superwoman, I tried and all it got me was run down, sick, and frustrated. There is no shame in asking for help from friends and neighbors, just make sure to rotate through them so that no one person feels like you are depending on them.

In regards to your children, they are old enough to understand what is going on and they should be helping you out around the house as well as emotionally. Have they ever watched a video about PD? Do they know what the future holds? Make them up a list of chores that they can help with like dishes, garbage, folding clothes, etc, so that you have more time for you. Take that personal free time to relax and pay attention to your needs.
There are many here who can give you suggestions on YOUR personal time. Me, I get up one hour before everyone else and spend that time on the computer surfing the net, or I just get a cup of coffee and go outside and enjoy the fresh air. Then I get up my baby girl get her ready for school, then my DH, as he requires more time to get ready.
Hope some of this helps in your journey and know that we are always a click away.

Everything happens in life for a reason.....





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