My husband has had PD for over ten years. His sense of reasoning and judgement are way off. He drools a lot so we need a bib most of the time. He falls a lot, and is not safety minded because of his sense of judgement. I have not handled it well a lot of the times because he is very stubborn as well. I feel at this point I have a child on my hand who will never grow up. He now attends the Adult facility at the VA three days a week which has helped a lot. He is very apathetic which is part of PD. Still I feel for him because he didn't expect this to happen and never really enjoyed his senior years. He was 62 when diagnosed. And at times he is still a sweet gentle person. It is very difficylt to have to take over every aspect of a spouses life. There is no one to blame. I guess it is just life.

Wow - that's a significant percentage if the numbers are correct... Mebbe we had better put this on the list of things to ask about...

quote:

Originally posted by Bobcat:
The article said it is suspected to be involved with as many as 5% of dementia cases. 1 in 20

Holy cow! Looked it up. About 3.4 million people with dementia in the U.S. That would translate to 170,000 of them that could possibly be cured with a simple surgical procedure.

When you also subtract out those who have other conditions such as depression which mimics dementia, or dementia caused or contributed to by the medications they are taking ... wow.

The thing is that the family has to actively pursue testing. I think that most of us have shared the experience that we have to be aggressive in seeking a right diagnosis.

I confess, it didn't come to me in its entirety immediately. I could remember the pressure and the hydro part and let google do the rest.

It really did come up only a few weeks ago for a friend. That was still the best I could do. The article said it is suspected to be involved with as many as 5% of dementia cases. 1 in 20

quote:

I swear, my brain is still fried from the holidays.

Man, TORP, if "normal pressure hydrocephalus" didn't come tripping off my tongue, I would just HAVE to check myself in for an overhaul!!

Sometimes, we forget how foreign all this is to us no matter how much we discuss and deal with it!! I think that MAYBE, in this case, we can let you off with a slap on the wrist with a wet noodle for not recalling that one right away!!

Shoot, most days, I am lucky I can even spell my name correctly and remember if I ate lunch or what...

That's the one. Thanks Bobcat! The name of it just wasn't coming to me.

I swear, my brain is still fried from the holidays.

TORP, something like that recently came up for a friend. Normal pressure hydrocephalus (NPH).

http://www.neurologychannel.com/NPH/index.shtml

Thanks for bringing that up. If it even explains 1 in 10,000 it is worth the look to see.

quote:

Originally posted by Moms_Buddy:
Parkinsonian symptoms do not necessarily indicate Parkinson's disease. Lewy Body disease produces parkinsonian symptoms, dementia, etc., but is treated quite differently than either problem alone...

There's also a condition where too much fluid accumulates and causes pressure on the brain. I've known two people with Parkinson's diagnosis who, it was later discovered, had this. This condition is correctable with a relatively minor surgery, and they both made full recoveries!

We look into it re our LO, but the brain scans showed normal fluid so ... no luck for us.

quote:

Why won't they diagnose Parkinson's yet they precribed meds for Parkinson's? I think T.O.R.P. is right about the reasoning -- if he responds to levidopa/carbidopa, they'll know for sure.

Parkinsonian symptoms do not necessarily indicate Parkinson's disease. Lewy Body disease produces parkinsonian symptoms, dementia, etc., but is treated quite differently than either problem alone...

Only a few years ago, Lewy Body disease was regarded as a "rare" disorder and many physicians had not even heard of it! Now, we know that it accounts for a large percentage of Alzheimer's-type conditions and more than a few misdiagnoses of Parkinson's disease. Many of the meds given for dementia symptoms now are not advised because they can produce symptoms that resemble Parkinson's and can actually worsen a patient's condition, particularly ambulation.

If you question your LO's diagnosis, don't hesitate to have them reevaluated by a different specialist. Knowledge CHANGES over the years, so don't be afraid to question and get second or third opinions to either confirm or update someone's original diagnosis. These are truly areas of specialty and there is so much being learned on almost a daily basis, it pays to review meds and diagnoses frequently, especially if things don't seem to be going as you might expect.

Why won't they diagnose Parkinson's yet they precribed meds for Parkinson's? I think T.O.R.P. is right about the reasoning -- if he responds to levidopa/carbidopa, they'll know for sure.

But experience with my mother also tells me doctors don't respect the judgment of patients with Parkinson's, so they may not discuss it in full with them. They know one of the symptoms is the inability to make decisions and/or the inability to make sound, reasoned decisions. And Parkinson's sufferers can have great difficulty learning new things. There also isn't much medicine can do beyond prescribing the appropriate meds, and docs hate illnesses they know they can't cure. Depresses them -- they're human, too.

When Mom sees her neurologist, he runs her through some standard physical tasks, makes notes about the progress of the disease, then reschedules for a few months so he can check again. He's not very warm and fuzzy. Monitoring and regulating the dosage of the meds is about all he can do. (Though there are some promising innovative treatments on the horizon.)

I'd say call the doc and grill him or her about diagnosis and future plans for diagnosis/maintenance. Our neurologist is much more open and informative when talking to me rather than Mom.

If it is confirmed as Parkinson's, hit the web some more. There are Parkinson's support groups both for sufferers and their caregivers. There are simple, gentle physical therapy exercises that are designed to help stave off problems brought about by the illness for as long as possible. And research diet because Parkinson's affects the digestive muscles along with everything else, and Parkinson's patients are prone to constipation which can be uncomfortable for them, obviously.

The illness is different in every patient. Mom had subtle mental difficulties well before physical symptoms were apparent. She is having more problems now, we're sad to see, but having the right dose of meds does really, really help.

You stated hubby was stubborn.Mine was also, until the doctor sat down with him and talked in an assertive but kind way.Helped him to understand was was happening and what he could do to make things not as difficult.
He listened to them more then me.Understandable because they were doctors and I was a lay wife.
Most of the time he trusted me and knew I would protect him and see he had the best care, at home.

Marge, when we first discovered my husband symptoms of parkinson it was a shuffle when he walked and a severe stup.I knew the cause before he was even diagnoised.We were fortunate to have a correct diagnosis by a good neuroligist.He was on the meds you have described and others.They served him well.He never showed child like behavior but soon began with paranoid phychosis.Meds helped.He had severe drooling til he was beridden because of his inability to walk.We would keep something on him to absorb the drooling.Soon his mental condition became more of a problem then the ability to walk.He was discovered to have LEWEY BODY DEMENTIA.Meds kept this stable unless he got re occuring urinary tract infections.That would really set his dementia through the roof.
He usually responded to treatment.
He was given seroquel for the mental problems.He , later , was given meds for severe depression.
He had his moments but meds kept him at an even keel witout making him a zombie.
What took him from me was a double blood clot from his legs that traveled to his lungs.
One thing to keep in mind when they become imobile is to inquire about special support stockings.That is something I neglected to think to do.A wrong prescribed medicine can have severe affects on one with parkinsons or dementia.I was fortunate as I had great doctors from the VA.A gheriatric doctor, at the VA was so informed about the disease and the correct treatment.
Sadly, his general physican and his associates were very ill informed and cause too many set backs for my husband.It got to the point where I never consulted them for anything.
Only time they were called is when the home health organization needed him for something.
The best things was my husband had lots of physical therapy and he did alot of walking with his walker.
His physical being stayed so good until that day of the blood clots.We were not prepared because he had showed good physical health

Parkinson's is one of those diseases that is usually considered a "clinical diagnosis." In other words, if they have the symptoms and other things for which you CAN test have been ruled out, they prescribe the medication. If the sinemet improves the symptoms, that confirms the diagnosis.

Lynda, when praise is warranted , give it.
Unfortunately , there will be times when we have to take a strong stand when we see a loved one wanting to do things that could harm them selves or others.
It does not make one popular when we are forced to make boundries.
Our children never liked boundries when they were growing up.
When you know your stance on something is right, stand your ground.Not always easy but necessary.
I recall having to take hubbies driving privleges away.I know what it meant for him.But I knew it had to be done to protect him or someone else.
Our role is reveresed and we have to say and do what is right for the situation.
If he brings the subject up , give an answer and walk away.Do not give him a forum to manipulate your feelings.Think of these decisions as acts of love.
Not always easy but the end will justify the means.

My second concern, my father's undiagnosed Parkinson's disease. What would keep the neurologists from officially diagnosing it? He has all the symptoms but the tremors. According to my mother, who goes with him to all his VA appts, the doctors have told him that his muscles have gotten rigid and have told him to do simple stretching exercises. He has also been prescribed a combination levidopa/carbidopa medication. My mother was given both a patient's pamphlet and a medical report written by neurologists. But, why won't they actually come out and say it?

Hi, I am new to EC. I am helping my mother to care for my father who has IMHO undiagnosed Parkinson's disease. (He has all the symptoms but the tremors.) I have read every post in this forum, and I find them very helpful. I have two concerns, but I will address them separately.

First, Mae, you mentioned that "stroking the ego" of a PWP is actually very helpful. I would generally agree with that, since praise and positive stroking do help lift one's mood. But, I think the problem is my dad's basic personality. Every time he gets some sort of "ego stroking", the next day, in fact the next week, he starts doing things he is no longer physically or mentally capable of doing. Like driving. (God, that was a hair-raising week! My uncle had to come by the house and lock up the keys to keep him safe until my mom came home from her golf tournament!) How can I praise my dad, without him getting the idea that he's now 30 and can do everything he once did?

The more time passes, the more sure researchers are that exercise can also have a very strong impact on depression.

They used to think anything that wasn't a pill wasn't really very helpful but I notice they're starting to admit that diet and exercise can play a really significant role in our mood regulation. Sometimes medication is needed, too, but now they advise no matter what else you do for a problem, eating a nutrious diet and moving about in the sunshine a bit will help. :-)

http://www.mayoclinic.com/health/depression-and-exercise/MH00043

It is so good when you can fight depression by making life more interesting and healthier. All of these things you mentioned are so important. For many, it seems that nothing works but pills, but there are so many side effects. Glad you are getting the support you need, it makes a world of difference.

Well, her medication for depression has never changed over the years. She takes 30MG of Paroxetine. However, it is my feeling that when she was first diagnosed and then was forced to retire from work, it hit her hard, very hard. At one point her psychiatrist told me he was one step away from hosptilizing her. I think the most important thing I did was put her in the adult day care. The second thing I did was to start taking better care of myself. If I was stressed, there was no doubt that my negative energy was impacting her. We also eat much better now, no more fast food. Diet I believe is very important. I'm not talking microbiotic but just good ole' fashion home cooked meals. With being busy all the time, I allowed us to get into eating badly. Lastly, support from friends and family. I can't stress enough how important that is not just for me but my mother. Neither of us feel alone in this....

Glad to hear from you, AnnaS. It sounds like things are working out well. What did you do for her depression?