[Jim091866]

How long are we to be expected to have our once productive lives just stripped away from us. Prior to PD I was a 31 year old firefighter/paramedic, had a bright career, a wife and was basically happy with life. Now I've ran the course of the meds, had DBS which I recently found out that my neuro was turning down the stimulator, telling me he was turning it up! He even contradicts the settings in my chart! I'm supposed to go to a MDS but my wife won't change her day off to go with me. Last week I was in a nursing home because they couldnt care for me at home. I could not get anyone to answer the call bell after 15 mins and I ****** myself all over the bed. My life has been reduced to pitiful. I cannot be sexual because of SSRI's that I take for depression. My wife makes more time to spend with my grown daughters than with me. We sleep in separate bedrooms because I turn too much and I snore. She is not even interested in just laying in bed and talking together, I tell her that it doesnt have to be sex, she says thats what it will turn into and then I can't come through. My life sucks. Some days I am happy but not lately. I see more that I have lost than I have to gain. It seemed like they were glad to get me into a home, worried only that I would be "cared" for and didn't even stay 30 mins. I don't know but there does not seem anything to look forward to, I need something to hold, something to hope in. I have 3 great dogs, two black labs and a poodle mix. This past December I was in the garage and I tied an extension cord to the rafters and twisted it around my neck, stood on a bucket and they were what I thought of, they saved me. Maybe I'll just fall asleep next to them and hope for tomorrow.

[Chicory]

I am sorry things are not going well for you and that your wife is not more supportive. I hope you will hang in there. I can't think of too much to say now, but I am sure some others will reply to your post in the morning. It would be good if you could find a new hobby or interest or find a PD group near your home where you can meet others with PD. I will pray for you.

Chicory

[Evonne]

Originally Posted by Jim0918

How long are we to be expected to have our once productive lives just stripped away from us. Prior to PD I was a 31 year old firefighter/paramedic, had a bright career, a wife and was basically happy with life. Now I've ran the course of the meds, had DBS which I recently found out that my neuro was turning down the stimulator, telling me he was turning it up! He even contradicts the settings in my chart! I'm supposed to go to a MDS but my wife won't change her day off to go with me. Last week I was in a nursing home because they couldnt care for me at home. I could not get anyone to answer the call bell after 15 mins and I ****** myself all over the bed. My life has been reduced to pitiful. I cannot be sexual because of SSRI's that I take for depression. My wife makes more time to spend with my grown daughters than with me. We sleep in separate bedrooms because I turn too much and I snore. She is not even interested in just laying in bed and talking together, I tell her that it doesnt have to be sex, she says thats what it will turn into and then I can't come through. My life sucks. Some days I am happy but not lately. I see more that I have lost than I have to gain. It seemed like they were glad to get me into a home, worried only that I would be "cared" for and didn't even stay 30 mins. I don't know but there does not seem anything to look forward to, I need something to hold, something to hope in. I have 3 great dogs, two black labs and a poodle mix. This past December I was in the garage and I tied an extension cord to the rafters and twisted it around my neck, stood on a bucket and they were what I thought of, they saved me. Maybe I'll just fall asleep next to them and hope for tomorrow.

Jim,

I am so sorry that you are feeling this way...and especially sorry to hear that your doctor is really playing around with you. It sounds like you seriously need to go see a MDS. That would be the first step that I would take. Hopefully, the new guy will be able to get things set just right for you and you will regain some of your abilities. Also, sorry to hear about the situation with your wife. She doesn't sound very sympathetic and that must be hard. It might be that she is really having a hard time watching you decline and it is hard for her too. She would probably really benefit from going to a PD support group with you. It is a great place to go for support and to learn about the great doctors in your area. As far as being in a home, I can only imagine how difficult that must be. I just started working in a home and I am actually taking care of a woman that has PD. She is in a wheelchair and completely dependent on me for all of her care. It plays with my emotions because I can easily picture myself where she is some day down the road. That is why it is so important for me to give her the best possible care that I can. I wish that other people could be more empathetic and relate to the residents the way that I do. On the other hand, I get a little too emotional and I know that is not good for me either. Even still...I prefer to have a heart! Hang in there, Jim. I will be praying for you, your family, and that you are blessed by having a wonderful set of caregivers. Your life is worth living.

Evonne

[libra]

You sound very depressed. Where do you live? Maybe there is someone who lives close by that you could visit with and talk to. Do your wife or daughters just take the time to listen to you? That is so helpful even if they don't understand what how you are feeling but to be able to be there so you can talk to them. I went thru a clinical depression when I didn't have parkinsons and it was horrific so I can only imagine what you must be going thru. Maybe you can switch docs, he sounds worthless. Did he give you a reason for the way he has been changing your meds? Maybe your antidepressants aren't working anymore - that happens. You might need to switch to something else. I know it's a hassle but well worth it.

Whenever I am sick and lying in bed my cat always lays beside me. Animals know when you aren't feeling well. They are just wonderful to have as companions. As I am typing this, my dog Bruce is laying curled up next to my feet. I am glad you have your doggies.

Please respond back and let me know if things are getting better. I really do care.

[chasmo]

we all have been there my friend. It DOES get better as time goes by. I think getting your wife to go to a support group is a great idea. Don't push her though. Perhaps you can make friends with another couple.

give me a call if you want to talk.

Charlie Black, { PM for phone number}
PD Since 1985 DX;ed in 1990, Bi-lateral DBS-STN At UCLA in 2002

[Jim091866]

I don't remember from my post if I mentioned that I had the appt with the MDS. He adjusted my settings and I walked out of the office from being wheelchaired in. I had gotten my chart from my neuro and he had been reducing my settings because he stated that I looked dyskinetic, I've been stifff the whole damn time. Then he says that "The patient was obsevered for 40 minutes in clinic post adjustment." I've always walked straight to the appt desk and then out the door. There are so many contradictions, the settings that I was left at were different than what the next visit starts at...????My records had somone else's in with them. What a mess....What can you do...

[paula_w]

Jim,

May I use this post in a talk i am giving at Shake Rattle and Roll? no names of course. just telling it like it is. i'd really like to share it.

thanks for considering,
paula

Originally Posted by Jim0918

How long are we to be expected to have our once productive lives just stripped away from us. Prior to PD I was a 31 year old firefighter/paramedic, had a bright career, a wife and was basically happy with life. Now I've ran the course of the meds, had DBS which I recently found out that my neuro was turning down the stimulator, telling me he was turning it up! He even contradicts the settings in my chart! I'm supposed to go to a MDS but my wife won't change her day off to go with me. Last week I was in a nursing home because they couldnt care for me at home. I could not get anyone to answer the call bell after 15 mins and I ****** myself all over the bed. My life has been reduced to pitiful. I cannot be sexual because of SSRI's that I take for depression. My wife makes more time to spend with my grown daughters than with me. We sleep in separate bedrooms because I turn too much and I snore. She is not even interested in just laying in bed and talking together, I tell her that it doesnt have to be sex, she says thats what it will turn into and then I can't come through. My life sucks. Some days I am happy but not lately. I see more that I have lost than I have to gain. It seemed like they were glad to get me into a home, worried only that I would be "cared" for and didn't even stay 30 mins. I don't know but there does not seem anything to look forward to, I need something to hold, something to hope in. I have 3 great dogs, two black labs and a poodle mix. This past December I was in the garage and I tied an extension cord to the rafters and twisted it around my neck, stood on a bucket and they were what I thought of, they saved me. Maybe I'll just fall asleep next to them and hope for tomorrow.

[Jim091866]

I don't think that you would need my permission lest you use my name. Then I get 25% right.,lol.

Originally Posted by paula_w

Jim,

May I use this post in a talk i am giving at Shake Rattle and Roll? no names of course. just telling it like it is. i'd really like to share it.

thanks for considering,
paula

[rd42]

I was diagnosed at 30 too. My dog Willy always comes to mind when I feel like I'm at the end of my rope (or leash

Good luck to you and here's to pets

My good buddy Willy:

[Jim091866]

Pictures attached, I hope. Thanks everyone.