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By Tangowalker On 2012.03.23 20:48
This is my first post here, but Iíve been lurking for a while. It seems weíve reached the end of the line.

First some history. My husband was diagnosed about a year ago, but may have had PD much longer. He has suffered depression for years, initially from losing his job, but then it came back (PD?) Not knowing anything about PD we put things down to his depression, like the slow, stooped shuffling, loss of interest in anything, isolating himselfÖyou all know the symptoms. He was finally referred to a psychiatrist & she came out of her office to get him (his MD never saw him walk). She asked him about PD right away. He was referred to a movement specialist & she confirmed the diagnosis, put him on Sinemet & Domperidone, in addition to his anti-depressant/anti-anxiety meds. His physical symptoms have improved, but his attitude hasnít. It seems to be deteriorating. Heís miserable all the time, feeling sick & full of self-pity. I get that this is hard & Iíve tried to suggest things to help him get connected with people, get him out of the house, Iíve suggested we move, get counseling to help with our relationship. ďNoĒ is his answer to everything.

I hate even coming home anymore. I feel OK when Iím away from here, working or doing activities to help myself, but weíre at each other all the time when Iím here. I canít stand this anymore. I thought Iíd sneak a trip to my sisterís in while heís still physically able to look after himself & when I came back I found out he had taken all his money out of his RRSP. He eventually told me it was so heíd have money if I through him out! I canít believe he thinks Iíd do that. Heís also been telling others how unsupportive I am & how wonderful his kids areÖhe rarely hears from 3 of them, but they are the supportive ones! I put up with this all day & Iím nothing!

So things have hit the fan & I think weíre through. I canít believe weíre at this point. We had such a good relationship for 10 years, but the last 7 have been going downhill fast. How do you leave a PWP who has nothing but govít pensions & no benefits if you leave. The meds cost so much.

Sorry for rambling & dumping all this on here, but Iím lost!

By lurkingforacure On 2012.03.23 21:53
I'm so sorry. Perhaps if you sat down and looked at how things are now compared to how they might be if you separated, it might help clarify your decision. There are lots of programs to help those who cannot afford meds or services, at almost every level of govt. If you are in the US, there's medicare if you're at the right age, medicaide if you aren't and you qualify financially, and on and on. Even many pharmacueticals offer free meds to some folks depending on circumstances. I don't think it fair to either party to stay with someone because of their resources or lack thereof, that rarely works long-term.

A heart to heart talk also might help. Someone here posted about their PWP turning around after he realized he was alienating the person most on his side and his alternative if she bailed was a nursing home where no one would visit. Sometimes it takes a reality check for things to change. It's hard feeling taken for granted after all you do as a spouse and caregiver but that doesn't mean you can't let him know it's not OK. Good luck.

By Tangowalker On 2012.03.24 01:16
Thanks for your reply. We live in Canada & I don't know about resources for payment of meds. He will likely have spoiled his chances of help by taking out the retirement money. That will be considered income if that's what the help is dependent on. I did manage to stop some of the $ from coming out, but it will still add considerably to his taxable income next year.
I don't know if he's thinking clearly enough to understand what his life will be like if we separate. I don't think he's under any illusions that his kids will have him move in with them, so I don't know what he thinks he'll do. For me, I will lose my home & my husband, but I feel like I would get my life back. That sounds selfish, & I have managed to still have a fairly active life despite his PD, but my home life is horrible at times. How much is one person supposed to tolerate? If I could at least share the load with someone else, maybe it would be easier, but he won't let that happen.

By Reflection On 2012.03.24 12:32
I don't know what's best for your marriage.
However you decide to go on that - I strongly urge you to do whatever you have to do to get your husband on antidepressants. Depression is an organic part of PD, but it is treatable. Not every one reacts the same way, to the same medication, but if the first doesn't work try another.
I have ranted on this forum about the evils of dopamine agonists, so I'm hardly pro-drug. But my husband has been on the generic version of Wellbutrin, at fairly high doses (450 mg/day long acting) - and while he's not well in many ways, I think it's helped his depression vastly.
Depression is contagious. Being around a deeply depressed person is depressing. It will help both of you if maybe antidepressants could help. Good luck.

By Tangowalker On 2012.03.24 13:46
Thanks. He's on anti-depressants & anti-anxiety meds under the care of a psychiatrist & has been for years. He alternately complains that he's on too much medication or not enough, depending on the day. He's on Venlafaxine, the generic of Effexor, as well as Citalopram & Clonazepam. I don't think they're doing much for him, but I haven't seen him without them for ages, so don't know what he'd be like off them.

You're right, depression is contagious & I try to keep myself busy & stay positive so I don't fall into that. But it's hard when you come home to it everyday. He complains that we don't talk but he has only negative things to say, makes nasty sarcastic comments about people & things all the time. It's hard not to have that affect you. So our communication has broken down too. There are so many issues. But he won't make the effort to try things to resolve them. And although I'm part of the problem, I can't solve them alone. he needs to be part of that.

By dkleinert On 2012.03.31 21:30
From my experience, a relationship with a person with PD is not, and cannot be compared to, a relationship with someone without PD. My spouse, who has PD, and has been diagnosed for 7 years, but I know he has had the symptoms for much longer than that, acts like a child all the time - literally. He acts like a child with ADD. He has dementia. He lies about things all the time. When he will eat the things I prepare for him - mainly raw food smoothies and other vegan fare - he is so different, and he will do it sometimes. On those rare days when he eats raw food smoothies and vegan, he is almost like he used to be before PD, but most of the time, he chooses not to eat the things I prepare, and he demands I have junk food available for him. I have given up saying "No" to the junk food, and again, for umpteeth time reminding him why it is not good for him or us......we have a sad relationship. Mostly I try to feel sane when talking with him because of the things he does and says, I feel like I am the twilight zone most of the time.....We don't really argue much. Just a sad, isolated, lonely relationship. Non-existent social life for us or for me. My son and his family who live about 30 minutes from here don't include us in anything they do, and are usually "busy" when we want to stop by. Just like for Easter...... I asked if we could be together after church on Easter and he said he would get back with me.......that was days ago, and usually that means they have plans to be with his wife's family, and did not want to include us....I many times want to move far away so it is not so painful.......

I will say I have thought of leaving my husband also, but I could never do that.....what would he really do without me....he could not function alone - can't drive, remember how to run the washer, can't cook or grocery shop, pay bills, order meds, etc. I married for better or worse, and this is for sure the "worse" part, but that is the vow I made and will keep.

We have been down the anti-depressant route with Wellbutrin and a BiPolar med, but those only made him sleep all the time - didn't really change anything.

I have decided that being a spouse of a person with PD is the toughest of all "assignments". I would have NEVER chosen to be a caregiver - EVER. I am not patient.......never thought I would spend the last years of my life doing this.....

I feel your pain.....I am soooo sorry you are hurting from all of this and are in the place you are in.....wish I could push thru cyber space and hug you. Wish there were answers for us, but the only thing we can do is take one day, literally, at a time and then push on to the next one.

Whether you stay or go - only you can make that decision. Don't ever let anyone make you feel guilty for whichever decision you make. Know you will make the best decision you can at any given moment with the information and resources you have at that moment. That is the best anyone can ever do.

By lurkingforacure On 2012.03.31 21:56
dlkleinert,

I am so sorry for you also, what a hard path this is. I did wonder, though, about the comment you made about your husband being almost normal when he ate the vegan/raw foods you prepared....that should tell us all something about how food really does affect the body.

Additionally, if I noticed that much of an improvement in my husband because of what he ate (heck, any improvement!), I would make sure that's all there was in the house. If he wanted the junk food, he could go get it himself, which you said he cannot do......so, when he's hungry, he'd eat the good stuff and perhaps over time it might make a bigger and more long term difference. Google Dr. Wahl, cured herself of MS eating extremely healthily for about 18 months and maintaining, still to this day.

Easy to say, I know. We have little kids so only having broccoli and apples in the house is not an option for me, particularly as I pack all their school snacks and lunches everyday. I've found my husband will eat almost an entire loaf of challah bread in one night if I don't hide it, and assorted other odd things that one would never think to eat by themselves (entire huge jar of pickles, seriously, I have posted about this before as it is one thing that can send me over the edge).

I am sorry you are having such a hard time.

By LOHENGR1N On 2012.04.01 09:10
Again, People, Not to rain on any parade or seem like the constant downer but MS can go into remission, reach a point and progresses no further. So if a change in diet or exercise regime coincides with this many think it is cured or this was the primary factor in the change. Be very wary of expecting the same with Parkinson's Disease which doesn't.

It would be interesting to know if Dr. Whal has had imaging scans done and She has grown the Sheathing back around the legions (fill the gaps back in the sheathing) of the affected nerves in Her MS? Because in remission or at end progression of her case they would still exist. A cure would result in a complete healthy system with no legions or signs of any kind of having had MS.

By dkleinert On 2012.04.01 13:55
lurkingforacure: I have tried not making junk food available for him, and he gets so angry and hateful that it is just not worth it to me. Mornings are the best time for him to seem to be so much better from his PD because he only gets his green organic smoothies for breakfast, and he is soooo good now in the mornings. I really noticed a difference in him when he was in the hospital recently for laminectomy surgery - when he ate hospital food for 3 days - WOW - so as soon as we got back home I made him a smoothie that he drank and liked, and he settled down and calmed way down, even though he was in pain, he seemed back to his state prior to the hospital stay. I have a close friend who put her MS in remission with raw, organic vegan fare. Mary knows that is what did it because she has kept a running documentation of all of it. She also knows that if she strays from her diet for several days in a row, her symptoms start coming back with a vengence.

So much is being found out in science and research now about how the food we eat affects our bodies - both negatively with preservatives, pesticides and empty calories, and in the highly processed foods we have become addicted to. We are a malnourished nation, and have all of the diseases to prove it. I won't say any more, 'cause I don't want to offend anyone, but I know for sure it makes a difference in Joe's abilities, his exhaustion level, his clarity of thinking, his strength and endurance and it helps him sleep longer and deeper.

If you have any interest, check out "Hunger for Change", (not the movie Hunger Games) website and their new video. It says it all.

By karolinakitty On 2012.04.01 14:00
dk...I still have those CD's on it... I can send them on to lurking if she's interested....

Lurking you can email me if interested in them..
pennyadams4u@gmail.com

By phoenix On 2012.04.02 22:02
dkleinert
I think I could have written that post. I'd really like to talk to you. I am living with a 62 year old toddler, and it is really tough. Please email me at jobishop1@gmail.com. Would like to hear from you, and find out more about the vegan smoothies.
Thanks

By corkcity741 On 2012.04.27 11:02
Hi Tango, I have Parkinson's for 10 years now. I prided myself on fighting it and winning, to the extent I now realise, I excluded my family. My answer was they just do not understand. Having read your piece I realise I have alienated my wife. She wants to be there for me and has asked very little just to let her know when I am having a really bad day so she nows what to expect whe she comes home. Of course she is at breaking point too, and I now know what I must do to allow her to fight this with me. It will be hard to include her but I know I must and I know I can.
I have depression too, we also went bankrupt almost 7 years ago. I had a heart operation 4 years ago. I have restless leg syndrome which was keeping me awake to such an extent I was hospitalised for halucinations. I am beter now.
I tell you these things because I now realise if I do not change I will loose the very person that is most dear to my heart and wants to help.

By Reflection On 2012.04.28 09:53
Dear Tango-
Sorry for the belated reply.
You mentioned that your husband is on anti-depressants, but query whether they are working for him at this time.
You might consider writing a letter to the doctor prescribing those anti-depressants detailing, as specifically as you can, what you're seeing. It's tricky to change - but possible that a change to a different anti-depressant might help. My sense if that you don't have much to lose at this point - so even if he gets mad at you for contacting his doctor, at least you know you've done your best to help, which can make whatever course you choose to take easier.
It's hard to untangle the physical effects of Parkinsons - by which I mean not only the physical symptoms but also the loss of neurons and their connections - from the impact of Parkinson's medications and the effect of having a degenerative illness.
And depression is an organic part of Parkinson's. But - big but - in my husband's case, treatable, so trying a different medication - who knows? could help. Maybe even a different doctor?
And, perhaps, it could setting some boundaries. What you can take, what you can't. And that he has to take some responsibility for living as well as he can - eg, exercise.
It's hard. I feel for you.
And Cork - I'm sorry to hear of your struggles. You sound somewhat like my husband, though we have some significant other complications. What I can tell you is that appreciation goes a long way. Even - especially - if it seems unnatural, if it's not what you usually do. Flowers, a note or card, saying how much you appreciate what she's done, getting or making her favorite food, bringing her a drink, whatever - you know better than I do what would be meaningful. The goal is to convey you actually care, appreciate her - not because you want her around to help, but because you love her, and want the best for her. Go for it. Just Do It. Frequently.


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