For those who care for someone with Parkinson's disease
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Topic How direct should I be? Go to previous topic Go to next topic Go to higher level

By sharons On 2010.06.13 23:04
My Mom is 80 and has had PD for a few years. Her main symptoms are freezing and shuffling when walking, feeling very weak and she is becoming incontinent. She is getting to the point where she wants to be pushed to the bathroom in her wheelchair rather than walking. Every day when I ask her how she is she says "terrible" and when I ask what is wrong she says "everything". She keeps saying something has happened because she is getting weaker.

I have read a lot about PD and understand things are probably going to keep getting worse. I told her one day that she needs to stop telling everyone she is terrible every time they ask, because things are going to get worse, and how are we going to be able to tell how she feels if she ALWAYS says she is terrible. It's like the little boy who cried wolf. I am just not sure how direct I should be with her. She is already so negative I hate to tell her she is going to continue to decline, but it's like she thinks something new is going on everytime she feels a little worse. She has never responded to any PD medications and the last time she saw her neurologist he said there was nothing more he could do for her, so she only goes to her MD and a urologist now. Should I let her read the posts on this website so she understands what she if facing, or would it be too much for her? I'm just not sure what to do.

By LOHENGR1N On 2010.06.13 23:45
sharons, I think you might need a second opinion, the A.P.D.A. has "Information and Referral Centers" throughout the States. (Other Parkinson's organizations might have also).
It certainly wouldn't hurt to look online to find one nearest you or call the toll free # 1-800-223-2732 to find out. There are new advances coming to light all the time that some Neurologists won't know about unless they keep current. (Also if She hasn't responded to medication there might be something more than Parkinson's going on, other Parkinson's like syndromes are hard to distinguish and an information and Referral Center would be better able to spot these subtle differences.) It can't hurt to find out and see. I'd hold off having Her read posts if it were me, she sounds a little depressed. To be told by the Neurologist there is nothing more they can do would tend to depress anyone. So I think I'd try finding a referral center and then go from there. Take care, best of luck and hang in there.

By Emma On 2010.06.14 04:44
I agree with Al, you need to get a second opinion. It's curious to me that she doesn't respond to Parkinson's medication and it's also a little disconcerting that her doctor would tell her that there's nothing else he can do for her this early in the game. There may indeed be something else going on.

As far as having her read the posts, I wouldn't do it. Right from the beginning my husband has dwelt in the here and now and shown no interest in learning about Parkinson's or what's coming down the road. If I were in his position I would want to learn everything I could so his attitude has been frustrating to me. Nevertheless, it's his life and his disease so my strategy has always been to only tell him what he wants to know. A lot of times he thinks he has a new disease because he feels worse or develops a new symptom. My usual response is that we will tell the doctor about it but that it's probably just the progression of the disease, or I'll tell him that I read about that and it's common in Parkinson's patients. Just recently he has been asking a little more about the future and what's going to happen, but again, I never give him more information than he specifically asks for. He is depressed and negative like your mom, which is frustrating for the caregiver, but understandable for the patient. I always try to remind myself that for most of us if we don't feel good or we have an ache or pain we just go about our business and try not to focus on it. He has no business to go about, he doesn't have much else to think about it. Because of the advanced stage of his Parkinson's (and the dementia) he spends most of his day sitting in his chair so it's natural that he's going to focus on and think about every little thing that is going on in his body. He also seems to think that there is a cure for everything and that I am derelict in my duties because I haven't found it. I tell him that there is no cure yet and all we can do is try to make things as easy and tolerable as possible.

That said, I do understand how aggravating it is to deal with someone who is always negative and complaining. Sometimes I want to tear my hair out. I would give anything to hear a cheerful word now and then. I feel for you.

By karolinakitty On 2010.06.14 08:38
Hi there ... i agree with all the above... you need to get a second opinion.... If she has a Parkinson's plus diseases, for example, the patients don't always respond to Sinemet and other PD drugs. In fact the sinemet can cause adverse reactions, in ceratin cases of PD plus diseases. If you have a teaching hospital near you, most likely they have a Movement disorder Clinic, they would give her a better evaluation, then a standard neuro. Getting the right doc is a must. About 2.5 years ago we saw a neuro who told mine he was just depressed and needed a colonoscopy ..... i would like to sue that idiot as a few months later we got the dx of PD, but that's another issue
Google a movment disorder clinic in your state and see what pops up. Or google Parkinson's Specialist that may help you also.....

By sharons On 2010.06.14 21:58
Thanks for all of the suggestions. She does have a Parkinsons Plus disease. She was initially diagnosed with ideopathic parkinsonism at the Cleveland Clinic. Then after new testing was done in our hometown, this neurologist said she has lower body parkinsonism because she doesn't have the tremors and many other common symptoms.

I had thought it would be too much for her to read the posts on this site, but I guess I just needed to hear that from someone else. I try to be honest with her, but I don't want to scare her. It breaks my heart to see her struggle to walk, and I can't imagine how she must feel. She has gotten to the point where she is asking God to take her, but it is hard for me to see her give up, even though I know her quality of life is pretty miserable. I try to take her almost 3 year old great grandson over as often as possible because I think he brings her more joy than anything else.

Thanks to all for your input. It helps knowing you guys are there for support!

By karolinakitty On 2010.06.15 08:42
I still would try another opinion.. Many neuros, including movement specialists, do not like the term "lower body Parkinsonism". The reason being that the "normal" eldery gait, coupled withe other eldery and aging problems leads one to believe the parkinsonism. If there is no severe cognitive issues and no tremors, they consider it senile gait or gait abnormality of the elderly. If there is no slowness or rigidity in the upper body or no tremors in the upper body then it probably isn't a PD issue. Pd drugs have no effect on this either, they don't help just add on the side effects. If you want to check out more on this go to : .... neurology and then lower body parkinsonism.....

By sharons On 2010.06.17 00:41
I will talk to her about getting another opinion. I think the biggest reason they think it is lower body parkinsonism is because of the trouble she has walking. Her feet freeze to the floor and she feels like she can't move them. If she is walking down a straight hallway, she does pretty well (a lot of shuffling) but no freezing. But when she turns a corner, goes from carpeting to tile, goes through a doorway, etc., she stops and has difficulty getting started again. She is in an assisted living apartment (very small), and it takes her about 10 minutes to get from her chair in the living room to the bathroom.

Thanks for the info on the website - I will check it out.

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