My father is in his early 60's and has had PD for a longggg time. Like over 20 years. He has been taking Parcopa for about 2 years and now that is all he takes for his parkinson's. He also takes clonazeapam, imimpramine, tamazeapam, welbutrin time released and lisinipril HCTZ. He shakes so much more and his doctor's just don't seem to care. They are starting to ignore us and I am in tears watching him shake like this. Poor daddy:(
I would like to know if there is a 24-Hour Help/Support line for Advanced PD patients? HELP?
- Posted:
- 20 Aug 2009 by Felicia2009
- Topics:
- parcopa, parkinson's disease
Details:
Responses (1)
20 Aug 2009
I am so sorry to hear that your father has Parkinson's Felicia. So do I. I have many unanswered questions concerning the disease. I am 56 years old, but I was diagnosed with this three years ago. I have felt like there has been something wrong with me neurologically for years and years. Who knows how many years I actually have had it! It would not be as likely to be diagnosed in a young person.
My feet swell. I think that is due to the Parkinsons's, or the medication that I am on for the Parkinson's. I have pain and stiffness all through my whole body, I don't know what that's all about. You're right too. The Doctors don't seem to care. Like they prescribe pain pills topeople, without knowing what the cause of the disease is. Any new ideas out there concereining Parkinson's
Kathryn
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Hello Katie Kat, it sounds like you are struggling with a good Neurologist just as we are. I have spent the last 4 days at the hospital with my dad because he parkinson's and his anxiety was out of control. His shakes pretty bad during his wearing offs and it shot his bp up to 234/226! Yeah, and the docs were ok with that--go figure! I hate when we even have to take him to the ER because there has NEVER been a doctor that could help him. Their only solution is to pump Ativan in him and send him back home. But wait, first they run a bunch of standard test to fatten their pockets and shrink ours. This time something must have freaked them out because they admitted him to the ICU department and 2 days later they put him in a private room where he is still being pumped with Ativan and now his BP is soooo low. It's so low he can't even walk.
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I have had to be the strong one for my mom to keep her strong but it's not working any more because I can not stop crying myself. Seeing him like this is sad! It's also wrong for doctor's to not care about PD patiets that have had it for sooo long. It's like they just don't know how to treat it. I just don't know what we can do. THey said just put him in a Nursing Home. THat is so cruel. When his meds work he is fine! When they screw it up he is not fine. I know putting him in a nursing home will kill him and I also know that sending him back home with my mom will at some point kill her because it's too much for her. She has her own health issues. He also has really severe mood swings from the PD meds. As for new treatment, I don't know of any other than the DBS surgery but it is not for people with severe mood swings or sever anxiety problems. I think your pain is coming from too much sinemet? Or, I can remember when my dad was taking Stalevo it worked well for the PD but it caused sever swelling in his fingers and he just could not take it. No matter what the docs prescribe to you please do your homework with the meds prescribed to you! Monitor the side effects and share them with your doctor. I guess you may know by now that taking your meds on schedule is simply "critical". We used the calendar in my dad's cell phone to put his med schedule in. It works well. The reminders pop on on time! It's easier to use than the expensive watch or pill case reminder. I hope this info helps. I am on a mission to help those that suffer with PD... Who knows, you just may see me on Oprah one day:) Hang i there Kate. I'm here if you ever need to vent/chat.
Thank-you so much for your response, Felicia. I am on a mission myself - a mission to find out more about the different causes of Parkinson's disease, research and new treatments and cures. I would like to paarticipate in a research project, if available, but I don't know what is availablle. I believe that my Parkinson's may be environmental, but how do I prove this. Katie Kat