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Topic Need Advice for Hospitalized Patient with PD Go to previous topic Go to next topic Go to higher level

By mrsmop On 2010.04.18 17:15
My husband had DBS/STN in 11/08. He recently fell, broke his neck, and had to have a cervical neck fusion. Before this injury he was fairly independent, but with the usual on's and off's of PD. He is not doing well, and his PD seems out of control which is impeding any progress. He can barely speak, and can't walk. He is in a hospital in CT and there is no neurologist in the area who does DBS. He had his surgery in a facility about 2 hrs away. He did have a local neurologist who did programming, but this doctor abruptly left the practice. He is in no condition to travel and would need an ambulance. I question if some re-programming would help him but this seems impossible. Any ideas as to how to handle this awful situation? Thanks...mrsmop

By LOHENGR1N On 2010.04.18 19:37
mrsmop, I would think He needs someone with experience regarding the DBS and how to program it and it's functioning. That said if you haven't yet I'd contact the hospital that did the operation. If You have trouble getting them to respond quickly ask the hospital where He now is to put you in contact to their social worker and request that they contact the operating hospital and explain the situation and need for expertise if the DBS so He can get on the road to recovery. Please keep Us posted on how you're making out, if you have any problems let Us know I'm sure between all of Us we can come up with some worthy suggestions and actions. Take care, best of luck and hang in there.

By mrsmop On 2010.04.18 23:37
My plan for tomorrow is to try to contact the neurologist at the hospital where the DBS surgery was done. I like this neurologist, but am worried that he might not want to consider any re-programming until he is more stable. We also have the logistics of transporting him two hours away when he likely would need an ambulance. Sure hope I can reach the neurologist to at least discuss his options.

By karnlowe On 2010.04.20 22:45
I hope you are in the hospital or have someone staying with your hospitalized PD patient around the clock. My husband was in the hospital recently, and we found that nurses don't understand the importance of giving PD meds on time. They simply don't understand it and you have to be there time and time again (through their various shifts, too, stressing how important it is to ensure that your PD patient receives his meds at a certain time. This is hard for them as they have schedules and other patients, but all of us know if you miss a pill by 10-15 minutes, it can mean hard times for a PD patient and they seem to NEVER catch back up on those pills for the rest of the day. Their body (and possibly mind) appears to be impacted for the duration of the day. the nuses will make you feel demanding and unreasonable, but stick to your guns. You know what is best for your loved one. My husband, too, has DBS, by the way.

By LOHENGR1N On 2010.04.20 23:47
karnlowe, Hi and welcome to the forum! You bring up a good point about med's! I've posted about this before but as new people come it is good to post it again. When a Parkinson's Patient is in the hospital it is very important to make sure the doctor writes the time between doses of med's! Example, if We take our meds 4x's a day 4 hours apart the doctor must specify this, if the doctor just writes take 4x's a day the nurses interpret this as every 6 hours and you will have a fight and a half trying to get them to listen to you! As you've said 10 to 15 minutes makes a difference so two hours makes Us a mess!! Again welcome to the forum. Take care, best of luck and hang in there.

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