feeling frustrated and overwhelmed.
 

I just don't know what to say. After spending a great weekend on a mini-vacation of sorts with a woman who I met online. she told me last night that she feels as if she's wearing me down physically because we spent the day out and about, had lunch and planned on going to movies last night. As the day wore on I was having a difficult time with my meds and staying on. we decided against our plans to go to the movies and just stayed home and watched TV. as we laid there in bed last night she related that she felt bad that I struggled so much during the day. I tried to assure her that it was not uncommon for me to go through periods of the day where I may not have much energy then once my medications are on again I can be back on my feet. She feels that she's hurting my health by causing me to want to be so active. She wants to take a break from seeing each other so I can recover some of my strength. We met online about a month ago. With her work schedule being very flexible we spend a majority of the day texting in a continuous dialog. She works as a physical therapist so when she is doing treatments we take a break. It is amazing how well we fit together so well in so many aspects of life. Since she lives about an hour away we have only spent an actual 3-4 full days together with these being her day off. There are a lot of things to be said this far. I realize that we barely know each other but you can imagine what I am thinking. The worry of losing her is huge. After going through the train wreck of the last year or so I have not felt so content with life in a long time. Now I feel like I have been punched in the gut. I am so mentally a wreck. If it was not enough to keep yourself up in spite of the challenges of dealing with this disease now it threatens to yank away someone who I am growing very fond of. I keep on telling myself that nothing has changed, we are still planning on seeing each other and we're still talking. So I will pray and wait. Like swallowing a bitter pill what more can I do?
Another subject that is bothering me is the thought that it is totally uncalled for that I suffer with these off and on times, up and down with the meds. There is a therapy out there, Duodopa, that works. It is in use, and has been in use in many other countries-albeit the difference is that they have socialized medicine. Whereas, here in the states we have capitalist medicine, the almighty dollar. I am more than convinced that it is due to the cost of the treatment and how to get the bottom line covered that is preventing this from coming to the market. I imagine a corporate honcho standing in the window of a cancer patient who is dying. His company has a drug which cures the disease but there is not enough of a profit margin to cover the development and bringing it to fruition. What a cruel @@@tard. I hope that market forces will act and soon another company will develop a similar therapy or a better one. They are working on the inhaler and there is a patch sort of system being developed in Israel. I have to just hang in there.
Another thing that overwhelms me is the fact that my mom now lives with me after having brain surgery in February. She has recovered but cannot return to work. Her monthly social security is only 300/month. Since my wife left me 1 1/2 yrs ago I cannot afford the house we are in. As such it is in foreclosure, I have been turned down for a modification. I have checked on rental rates in the area. At about 1,000 a month I can afford to cover everything without my mom but leaving only about 300 a month for food/gas and incidentals-not very promising.
Well that's my gripe for the day.
I can only say I am definitely praying for comfort, easing my mind.

Jim.....
 

It is unlikely that anyone can give you any comprehensive advice as to your dilemma. Me ,I wish it were not so, but the opposite sex is not a part of my life now, PD takes so much away from us. I save what "on time" I have for my children and what resources for them also. I realize that this is extremely not any kind of an answer to your frustration, but it seems to me that is all that the majority of us can come up with. I am sorry that you are in such a position. I hear and can relate to your post, if that is any kind of a response. Cs

Jim, I can sympathize and understand..Sometimes it is hard to accept the things pd has taken from us..It's hard and it often hurts to have expectations, cuz this disease has an agenda of it's own too..Many of us dont want to be alone, while others have no choice in the matter..Intimate relationships are something many of us want, but there comes point where the expectations and the dynamics of those kinds of relationships become complicated, and stresssful..Speaking for myself, if those kinds of emotions get out of control, they become poison to my illness, and I cannot function, cuz whatever I feel emotionally will manifest itself in me physically, and put me down like I got hit with a ton of bricks

Living in peace with pd for me, has been trying to the best of my ability, to adopt an attitude of accepting the things I cannot change, rather than trying to change the things I cannot accept

I dont practice what I preach with perfection by any stretch of the imagination..I still have hopes and dreams too..What I cant have are expectations..For me expectations become a pre-meditated resentment..Like drinking poison, and hoping the other guy dies

I try to focus on where God needs me to be now, also not an easy task either, because my self will tends to dictate and sidetrack me on numerous occasions

I hope things work out for you, and that you find peace and happiness

As if it was not enough, ya know!
 

CS, I am so sorry to hear that. It's not enough this disease takes all our strength to remain functional if possible. It drains our very souls. I have had the thought run through my mind that it is probably better if I don't have any relationship to avoid any pain and frustration on my partner as well as the responsibility of being a caregiver. Often I have told myself that I'm not going to become involved in any relationship and instead focus on my 2 dogs, my mom and I. Life would sure be simpler but yes, very depressing. It is beyond comprehension how devastating this disease is. It's not so much the muscle rigidity and trying to stay on. It is all of these other things that it just sucks the life out of us.

Jim,

you have got one helluva heavy load on your plate!! Struggling with PD, being a caregiver for your mother, worrying about keeping a roof over both your heads and a budding relationship where your partner thinks maybe it would be better if you slowed things down abit. STRESS STRESS STRESS I've been with my boyfriend since a year after I was diagnosed. There are times when we have had to modify our plans out and then there are times when I just "power" through the OFF times. Interestingly enough, I used to tell him, "I feel so much better when we're together" and it was true because being together cause the release of more seritonum (sp??). On more than one occasion I have been lying on his livingroom floor practially bouncing off the ground while waiting for my meds to kick in....and though it doesnt help, he'll get down on the floor with me and hug and hold me. Feels great! Hang in there. It may sound trite but things will get better.