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Topic Diaper Training and DBS Update Go to previous topic Go to next topic Go to higher level

By Witsend On 2014.03.31 10:26
Hi everyone,

I promised I would update on my dear husband's DBS progress. He had the device implanted on 2/14/14, and we have had 2 programmings. Well, 3 actually. The first programming was way too high, and instead of taking him to the ER, I read the manual and figured out how to turn it off. So the neuro dialed it down. Then 2 weeks later, dialed it up a bit. He is still considerably worse than before the surgery. The neuro says it can take 6 to 7 tries to get it right, but I am extremely discouraged. We definitely didn't need him getting even worse!

On another topic, my husband is so resistant to using the diaper pants at night. He WEARS them, but hasn't used them. So he still gets up to pee and falls. Every night. Has anyone else had this problem with resistance, and if so, how did you resolve it?

Love and hugs to all,

By jcoff012 On 2014.03.31 11:39
Joni, you sound so sad...I am sorry about the DBS...we have no experience with it. All I can say is that I would trust that it will be better soon. We are here whenever you need us. Hugs, Jane

By JulieB On 2014.03.31 14:16
I'm sorry things haven't gone as well as hoped, Joni. This is so hard.

My husband did what you're describing with yours regarding wearing the diapers at night. I think it's just such a natural thing to get up when your bladder is full, it was hard for him to "unlearn" that. I've mentioned this before and I know this wouldn't be an answer for everyone, but I asked our doctor (knowing that urinary urgency is part of PD) if he would prescribe something to help Michael sleep a bit more soundly, wondering if that would help him use the diaper instead of feeling that need to get up and not being able to make it to the bathroom. Our doctor said that sleeping meds weren't indicated for a PWP, but prescribed Ativan, a very small dose. It has been a godsend for us. I know that this won't be everyone's answer, but I thought I'd share since you asked. It has made a good night's sleep possible for both of us.

Hugs and prayers... xoxo

By Trying Hard On 2014.03.31 15:04
Hi witsend, never felt to engage, but his one I do. My DH had DBS in Nov of 2011, and the first year for us was difficult, he fell more, wow, just remembering. There is much to DBS, not just the setting for both side, but they can also increase or decrease the band width. PLEASE try not to stress, keep track of what you see and think you should see. Everyone responds differently with DBS, for us it is on going, he never settled into a normal, but still the motor benefits he has gained made all the stress in the end worth it. Hand in there!!!!!!!!!!!!!

By carman96 On 2014.04.01 09:50
Witsend, sorry the dbs is not working well so far. Hope it gets better. I have no experience with it and don't think my husband is even a candidate for it.
As far as the diapers go, my husband will wear them to bed, but gets up to pee anyway. Then he takes them off and puts regular underwear on. And then wets the bed quite often. Don't know how to resolve this. He doesn't fall much too much going into the bathroom as long as he remembers to use the grab bars that are everywhere. Of course he falls other times.
Is your husband falling because of the dbs?

By Dixie74 On 2014.04.02 03:24
My husband had the DBS on one side in November. Everything went so well until three weeks ago and he has fallen 5 times. Four were on cement on his face. Didn't break anything but a lot of bruising. Called the programmer and she said to increase the voltage three days in a row instead of every two weeks. Now there is too much cognitive problems. He is a stubborn/controller anyway but this new turn is stressful for me. He is sure I am wrong and the bad guy when he gets things mixed up. I called and got him an appointment in two weeks with the programmer 2 1/2 hours away. They will do the follow up mind testing later they said. I am going to have to force myself to speak up at the appointment about the cognitive problem. He will say things to make me sound like I have problems.....worry too much.....need to relax.....irritable etc. They will see right thru it and hopefully turn the voltage down a little.

The doctor had said they would only do one side and maybe the other in 6 months. It seems to me that the side they didn't do is progressing and fighting against the side they did. He only used the cane when it was icy. He has the U-step walker and uses it in the night to get up. Very stubborn!!

My doctor said to put my oxygen mask on first or the stress will take it's toll on me. That is so easy to say. My husband was a detail perfectionist always right person and handy man. I am glad he had the DBS because on the one side he doesn't have the rigidity, tremors, or total movement. I can't wait to get to the appointment in two weeks.

The cognitive part really throws me and I don't deal with it well. I will up my exercise and relaxing. I will get out more if I can. He will have a fit if I hire someone to come stay. Maybe the doctor will start Exelon patches or something. He will fight us on that idea.

By Witsend On 2014.04.02 04:28
Thank you all for your helpful and heartfelt responses. As I read the things we go through I am always struck by how little I would have known about living with this disease if I didn't have your willingness to share your experiences. As awful as some of these things are, it does help so much to learn that they are "normal".

Regarding the falling, he has done that for the last four years. It does seem worse since the DBS, and his cognitive problems have worsened also. I agree that the cognitive issues are the worst and the hardest to bear. More than anything, those are the issues that make me feel like I'm completely alone in our marriage. He had both sides done at the same time. God bless us all

By Trying Hard On 2014.04.03 19:45

By parkinit On 2014.04.04 00:56
If there was a sign of potential dementia, the neuros are not supposed to recommend DBS as it will make cognitive issues worse.

About seven months on after my spouse's DBS,he fell much more, too.

I think it is hard to find that perfect setting and then it is always a moving target with disease progression.

I'm sorry you've had such a bad experience with DBS.

By BCS46 On 2014.04.07 02:32
Reluctantly my husband has accepted the diapers and peeing into them rather than trying to rush to bathroom and injuring himself.

He doesn't like it. Hates it when we are out somewhere. Feels that everyone knows he is peeing into diaper, which of course they couldn't.

He is taking Ativan and sleeping thru the nite. He has towel under him, in case of leakage.

Is there no way to stop or lessen the urgency?

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