For those who care for someone with Parkinson's disease
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By forMomwithLove On 2011.01.20 20:00
I am glad I finally found this forum. I have been looking online for a caregiver support group but haven't found any active ones. Finally, in my google search the other day, this one came up.
My mom was diagnosed with PD in 1996. She did fine for many years with just the carbo/levo meds. In 2000, she had to have her entire large intestine removed because the PD made the nerve endings in the intestine stop working thus causing blockage. She is also an insulin dependent diabetic.
My mom is 78 years old now. She had a pacemaker put in a couple weeks ago and has heart valve problems that would be too hard on her to have repaired. I really don't even know if she knows she has a pacemaker! She has been declining for the past three years rather quickly. Each time she has some sort of health set back (fall, broken arm, infections, etc..,), the PD seems to progress a little more.
She lives at home with my 80 yr old dad but I live within a quick walk from their house. I go over to their house several times a day - to help her get up and dressed, to check her insulin, to get her medications ready and to give her her meds, to make their noon meal, and to help with her bath and to help her into bed each night.
She has been through all of the PD meds but is now back to only carbo/levo and a super-vitamin called Folbee (which is suppose to reduce the risk of stroke). The other meds, Mirapex and Requip and I think there were one or two others, all made her hallucinate drastically. Even just a bit too much carbo/levo causes greater hallucinations.
I guess that is a pretty long introduction. Are others in the same place or have you been there? No body seems to be able to tell me what is next...

By oshroshr On 2011.01.20 21:38
I for one am always asking the same question, what is next? The people here on the forum help with that in a lot of ways. Your mom is lucky you are so close. One thing I am always concerned about is being alone in this when taking care of someone. My husband has the PD but I also took in his mom 15 years ago.
Who knew?
You will find great comfort in this forum as I do every time I look at it. We all know what is coming. But no one know when. I have learned this here at the formum not from the mds. You found a great place.

By Emma On 2011.01.21 04:40
forMomwithLove, Welcome to the forum, we're happy that you found us. We all need help and support on this journey and this is a good place to find those things. It is impossible to know what is next for your mom, especially since she has so many other serious health issues in addition to the PD. You have taken on a big job with all that you do for your parents. They are lucky to have you but please remember to take care of yourself too, it is so important. Have you thought about getting Hospice involved with your mother's care? Hospice no longer means that the person is expected to live less than six months, many Hospice organizations will now serve people who have a chronic condition. It might be worth checking into as they could provide a nurse to visit your mom and monitor her health among other things.

I agree with my friend oshroshr, you will find great comfort on this forum. There have been many times that the good people here have been the thing that keeps me going. Please stay with us.

By forMomwithLove On 2011.01.27 18:55
oshroshr and Emma,
Thank you for the replies. I have been reading the posts each day -- sorry to hear about your accident Emma and glad that you were not physically hurt. My mom never really liked driving so it was easy for her to give it up. My parents were retired by the time she was diagnosed so my dad just drove her any place she needed to go and then would sit in the vehicle and listen to the radio, read or take a nap while waiting for her. Now, my dad, who is 80 (and doesn't have PD) has voluntarily giving up driving also so I guess I am lucky that this won't be an issue for us.

I did not know that hospice is for chronic conditions also. I will have to ck on this.

And, a curiosity question for oshroshr -- does your username mean "O sure, O sure" -- I have a friend who says that all the time; she is fun and easygoing and willing to help anyone, anytime and is always saying "O sure, O sure". :)

By LOHENGR1N On 2011.01.27 23:52
forMomwithlove, From reading the forum you've no doubt by now read no one can tell what's next for sure as everyone's different with different symptoms and progressions. I know this is a frustrating part of the nature of the beast Parkinson's disease. You mentioned the med's and hallucinations, and even a little too much Carba/L-Dopa can cause your Mother to hallucinate more. This makes perfect sense, as I've said many times our medicines are mind altering drugs. Carba/L-Dopa is made from Ergot (a mold of rye) which is used in LSD also. This is why Neurologists monitor Us closely when adjustments are made in dosage of med's. There is a fine line we balance upon with our medications. Because it is the drug of choice and still best we have for Parkinson's Carba/L-Dopa is used so frequently in conversations and posts I think it may at times just be thought of, as aspirin is to a headache so is Sinemet to Parkinson's. However that is not the case it is a powerful medicine which is mind altering and can be mood altering as well. I say this so those new to this disease can be aware and as a reminder to research side-effects of any medicine. Also in this cold and flu season it is important to read the fine print on over the counter medicines as many warn of interactions with Anti-Parkinson's med's. Take care, best of luck and hang in there.

By parkinit On 2011.01.28 09:52
Welcome. Your mom is lucky to have a caring daughter like you.

What is next? Al is correct in stating that all PDers progress differently, but there are some commonalities, as I'm sure you've seen in the postings. Otherwise, everyone progresses at a different pace, some have tremors, others just rigidity, etc.

I agree with a poster here who said the longer they deal with the PDer issues, the more peace they have about the entire situation. Sometimes we must not worry about tomorrow, because it will come, we must be assured, and we do not control what unfolds or how the day unfolds when dealing with a PD person.

Blessings to you.

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