[Jim091866]

Me? not so good the last few days. I went to UF MDS and got new stimulator settings. I came home taking maybe 1-2 pills a day then it went to 1 every 2 hrs, 1 1/4 and now i'm at 2 pills every 2-3. I'm not upset at them, heck this thing is no picnic for anyone. I'm just sort of depressed and frustrated at the whole thing. I've been like this now for 11 years, I was really hoping for some marked results from the DBS and I know that I have greatly improved. That is evident (just turn it off for a minute). I'm just so damned tired of being tired, being achy, not able to move to do things during the day, I'm angry that when I get somewhere like the table and i sit -my timer goes off and it's time for meds but I have to wonder will I be better off getting it or asking my daughter or wife to get it and listening to the sigh, the comments "why did you leave it ...." "didn't you know what time it was...' I'm just really frustrated and depressed right now. Then the sex thing came up yesterday... I had feelings but my body wasn't with it so it went nowhere. discussion of the issue consisted of why do I need a pill-levitra then whats wrong with the present way things are -every 10-12 days or so. Well that's just not enough and I feel that the levitra will help, she doesnt. then it moved on to what if I'm in the mood and shes not-well now i've got some nerve expecting her to ingratiate me with no need on her part. Mornings are the worst, I'm off and I try to get my meds in and get outta bed to walk 3 dogs. Part of the problem is that I have always done well. I've always done it all, cooked, the kitchen, shopping, etc. My wife has severe agoraphobia and OCD and as such has problems leaving the house. Not to be rude but her OCD and paranoia at germs is such that she will not perform oral sex due to my parts being "dirty". She does not mind sex but that it is it we can have sex, nothing else. I'm not some sort of kinky freak but I like to be taken care of, she wants to lay there, simply lay there and I can do the deed that's it. And lately I have no energy at the night time when I am off and collapse into bed so I don't really mind but wow, how about if she did, nope thats outta the pic. Last month she has started on Zoloft which I am well aware of the sexual side effects but it has seemed to help her a lot , I am on it too and I know it helps. we've had this problem for all our years. To be simple I dont think that its too much for a wife or other to provide for the needs of the other person even if you don't feel like it yourself. Believe me I'm not a freak I feel I'm just a normal male. This is a simple case of if you are a man take care of her special wants, be it hanging pictures doing the little goofy things. But as for me a little bit of below the belt would go a long way. For the mental therapy part I wouldn't want to find another medication for us, we've been through a lot and this seems to be the best we've had it believe it or not. I was laying in bed today, needing my sinemet timer from the kitchen counter, the dogs needed food to be put down and I would have loved to have a drink of water. I asked my wife to make sure the dogs had some food put down for them. I just got a renewal on my life insurance and believe it or not 20 yrs ago I signed for automatic garanteed renewal, at same levels! You don't know what you've got sometimes. What a blessing! I hope to hear back from the clinic at UF tommorrow. This is really depressing. I know that I'll find the answer to our problems, probably in a couple of dayys i'll reside myself to the way that things are, I know enough that I'm not gonna change the situation here, I've been in it too long. I know. I'm the one that everyone else watches doing stuff around here. We have by no means brought our girls up this way, one doesn't live at home any more and one that does is truly blind to all that goes on. She doesnt think about the trash needs to go out , the dogs need to be walked, the laundry has a load to be switched. Her world is the iphone to her ear and when she was working the 6 hours of working at a jewelry store that absolutely killed her. Now at home on unemployment but she's doing better at helping out. Tommorrow we're moving into a 3 br apt so my wife can have her office space again and my daughter can have a place to paint.. HMM, I was on the job toting plywood at noon when I got out of school at 9 am the morning I graduated early. Did 48 hr shifts for 10 yrs- (firefighter shifts doubled on the ambulance too.) Now they talk of a double shift as when you work 4 then get held over to do the next 4 cause a co worker didn't show! Please!!! I need to just go and get a drink, take a nap and maybe we'll wake up in Oz. Thanks for the ear..

[dbiker2]

Hang in there Jim,,,,sounds like you are having a lousy day.....

[reverett123]

There's a lot in what you write that I can relate too. PD is in many ways a cruel disease. Sexuality is a good example. So many of our drugs affect our libido and performance, often in opposite directions. And when our mates are not in sync with us it can become a very sad situation.

No one can understand what we deal with when we appear normal so much of the time. How much of a struggle it is to just go over there and get a pill. It isn't just a matter of will.

So many of us are in relationships where we were always the strong ones. Now that we are not, things get rocky.

Wish I could tell you it will get better...

[lurkingforacure]

Good grief, man, give yourself some credit! From what you describe, you have been Superman for a couple of decades! And one of those decades, while suffering with PD!

It makes me crazy when I hear of a spouse who is, how shall I put it, less than understanding of PD. How quickly that spouse would change her tune if he/she had PD. As they say, "walk a mile in my shoes..."

PD affects the whole family, there is no way around it. But family members need to remember that their beloved PDer would give anything to not have PD, and just be able to hop up and get their own glass of water, or put their clothes in the hamper, or even take out the trash like they used to. It is easy to be selfish and get ticked off at the moment, but it steals the diginity of the person afflicted, who is already in a weakened emotional state.

The only advice I can offer is to perhaps have some honest discussions with your family, and let them know that when they act like this, it is NOT helping you and may actually be hastening your progression. And perhaps your family members are not as educated as they should be about the many, many ways PD affects someone (I'm thinking here of the lack of will/motivation, cannot remember the medical term for it), perhaps if they were, they might be more understanding.

But even if they are not, like I said, try to give yourself some credit, you have done more with PD for longer than many healthy people.

[Floridagal]

I appreciate your willingness to talk about a difficult subject. I m so sorry you are having difficulties. I know I'm definitely less able to do what I could do 5 years ago, sexually and otherwise, but I, and you too, are still worthy of respect, love and people who care. You are obviously an honorable, decent man. Wish you the best Floridagal

[Jaye]

I have seen so much of this family misunderstanding stuff in the 10 years I've been in this elite group. These days, I'm telling every doctor I see or who will talk with me that the psychosocial stuff is worse than any of the motor stuff. At least until end stage, I suppose. Come to think of it, I've experienced some of the negative reactions, too, but very little of the negative is at home. Just reread this thread, so poignant.

So where are you, cs, Thelma, Dona, toadie, steffi, and all?

Jim, thank you for your openness.

lurking, I think you should go all over on a speaking tour. Some of us do get awfully hard to tolerate, too, i suppose, but frank discussion seems like a good idea to me.

For what it's worth, my husband is unusually kind and accommodating, and my progress has been rather slow overall. In return, i treat him with a lot of respect and affection. And I can still cook really well. You know what they say about the way to a man's heart....

Still, it's sad what this beast does to a family.

Pardon the ramble, I'm a bit off today.

Jaye

[aftermathman]

people use the forum for their own particular reasons and some move on (Howardh where are you, miss our rugby chats).

Me, I get more from a post such as Jim's than most others, truth stripped to the bone, thankyou Jim.

Neil.