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Posted 10/18/2013 2:03 PM (GMT 0)
My husband has been a Parkinson's sufferer from 2000/2001.diagnosis time. He has been peg fed since October 2012 to save his life at the time. He now has several skin infections, constipation and water works problems. He can't stop going. I am not getting any advice as to what is going on but fear he is developing faults with his kidneys now. He also sleeps a lot, and will even fall into a doze when people are with him. It appears that his medication is loosing effect and he visibly falls back in himself after a couple of hours of medication going through his peg.
i do not know what these issues imply. Please can I have some advice because I am very concerned about this. Is he dying? My Husband is close on 74 years old.
Joy
Posted 10/24/2013 8:03 AM (GMT 0)
I don't want to step on anyone's toes, but it kills me not to at least ask if someone who is suffering from a chronic illness such as PD, MS, or ALS (as husband was diagnosed two years ago) considered being tested for Lyme Disease. I did some online research after my husband was diagnosed with ALS and found out Lyme mimicked many chronic illnesses so he got tested through a lab in California that uses a better method of testing for this bacteria. He tested postive. He started getting treatment and his ALS symptoms stopped progressing. You don't have to remember being bitten by a tick nor do you have to get the bullseye rash to be infected. It can also stay in your system for many, many years before rearing it's ugly head. There is a lot of info. online plus this site if you are interested in looking into it. I'm glad I did because if I hadn't my husband would probably be in a wheelchair or dead right now. Good luck and I'm so sorry you and your husband are going through this very challenging time.
Posted 10/24/2013 10:14 PM (GMT 0)
Joy, if your husband is taking Sinemet and has a peg tube, it is very hard to control the release of the medicine and therefore it's circulation. The medicine is going straight into his stomach. Basically he is getting a huge surge of medicine when it kicks in , it will make him suddnely void urine, also it will suddnely make him sleepy because his blood pressure may also drop with the surge. if he is unable to walk and is in bed, he will also get constipated from the medicine and the fact that tube feeding prevents enough roughage from getting into his sytem. Sinemet has many side effects that get worse with time to the point that there are more side effects and less relief from symptoms. If he is on any other meds you can write here again. The fact that he has been on a ped tube for a year it is a long time. Is he able to converse with you at all, is he alert. Skin infections go hand in hand with prolonged times in bed, sedentary, and if he is incontinent that just adds to it. You may have to determine what your husband wants. Sometimes giving the meds in smaller amounts at shorter intervals may help with the large surges, but the doctor has to write the order and the nurses may or may not be able to give it on time each time.

To be realistic, he has had PD for 12 years since diagnosis, he may have had it longer, he has been on a peg tube for a year, if your husband is coherent at any point you should ask him what he wants. You must have a heart to heart with his neurologist too. I am so sorry you are going through this, I can totally relate. I lost my Mum in June after a long battle, it does not get any easier as time goes on. Please write back when it is convenient.
Posted 10/25/2013 7:12 PM (GMT 0)
Thank you Brainstorm. You are correct in many of your points of advice but my Husband has not reached to point of staying in bed. in fact he will not go to bed! He does have, what I call plumbing problems. There is no urine infections but we do believe he may have malfunctioning bladder problems. It is a real problem to get his doctor to attend him. She has been called 3 times recently, I am beginning to think they are giving up on him and leaving me to cope with the on coming complications. It is becoming obvious that his medication is failing him. his speech is getting much worse, but no matter when we do ask what he wants, his reply is do not fuss he will be back to normal next week. He lives in denial of his condition I'm afraid. You are correct I do believe he has had Parkinson's undiagnosed for at least 3/4 years before hand. The doctor kept saying it was just back problems at first. It was diagnosed by my daughters Mother in Law, who's own father had suffered from it. Thanks for your message.
Joy Paula
Posted 10/26/2013 5:19 PM (GMT 0)
His bladder may be retaining urine; this is fairly common in PWPs - again muscles and nerves not being able to do their job, but also some meds such as sinemet can exacerbate the condition as a side effect. Doe she have a catheter yet?

What were his primary symptoms when diagnosed and now? What medication is he taking, how much and how long has he been on them? Why does he have a peg tube? Where on the body are the skin infections occurring? If the doctor and their office is not responding to your calls with 24 hours, you should find another doctor or at least get a second opinion. IF your doctor is not a Movement Disorder Specialist, it would be best to find one who is. Please write back and let me know about his meds here or at my email [email protected]. I will do my best.
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