Re: article

May 5, 2002

Thank you so much for all the articles.. lindad

Article

I am not trying to load you up on articles, but there is really some good

stuff in these various articles that may apply to some or all of us.

Eve Fleming

COGNITIVE IMPAIRMENT AND DEMENTIA

Many persons with PD complain of slowness in thinking and some word-finding

difficulties. Clinical research has demonstrated that this subtle form of

cognitive impairment occurs in a majority of PD patients. These mild alterations

in thought processes are relatively well tolerated by most patients as they do

not hinder day-to-day activities and responsibilities. Incidentally, some

patients actually report improvements in motivation and concentration when they

take the dopaminergic medications discussed previously.

Dementia refers to cognitive impairment of sufficient magnitude to hinder

daily activities or diminish the quality of life. Dementia is reported in

approximately 20% of Parkinson patients. It appears to be more common in

late-onset illness, i.e. after age 65. The dementia of Parkinson's disease

usually becomes apparent several years after the onset of motor features. It

often takes the form of memory difficulties, distractibility, slowed thinking,

and lack of motivation.

The presence of other aspects of dementia -- such as onset early in the course

of the disease, agitation, delusions and language difficulties -- may indicate

that the cause of the problems is not simply Parkinson's disease. A

comprehensive medical work-up for more complex dementia might include brain

scans and blood tests to search for more treatable causes for the cognitive

decline, such as vitamin B12 deficiency or thyroid disease.

Other neurological disorders such as stroke or Alzheimer's disease (AD) can

co-exist with Parkinson's disease. There is a growing awareness of a syndrome

termed " diffuse Lewy body disease, " referring to an illness which has some

similarities to both PD and AD. Cognitive impairment, hallucinations, delusions,

and relatively mild parkinsonian motor features are the hallmarks of this

condition. Post-mortem brain examination reveals the characteristic microscopic

Lewy body scattered diffusely in cells throughout several brain regions.

There are no specific medical treatments for dementia in Parkinson's disease.

Increased dosing of the conventional antiparkinson drugs such as levodopa does

not appear to offer benefit in regard to the cognitive symptoms. Some

antiparkinson medications can actually worsen cognitive function. This is

particularly true of the anticholinergic drugs.

Antidepressant medications are sometimes prescribed to help with the apathy or

lack of motivation commonly seen in Parkinson's dementia. There is often an

element of depression in Parkinson's disease, which in an older adult, can

masquerade as confusion or dementia.

March 21, 2005

I totally wrote to that doctor right after I read the article. I

kept it short and sweet, well maybe not so sweet. That Doctor should

correct her mistakes because the misinformation was negligent. The

last sentence I wrote summed up my point entirely:

" You have no idea how difficult it is for me and everyone else with

Still's to attempt to live a normal life, and the sad thing is that

neither will anyone who reads your article. "

I hope that she at least will know from now on not to misinform her

patients or other members of the medical community. At LEAST.

love melissa

xoxo

" Perhaps some of you would be willing to respond to it as well. If

she sees enough interest, perhaps that will do the trick. "

March 21, 2005

I just sent her a book also. Who knows, maybe they will run a much more

accurate story now.

Later, my head is a pounding!

Kirk

Re: Article

I totally wrote to that doctor right after I read the article. I

kept it short and sweet, well maybe not so sweet. That Doctor should

correct her mistakes because the misinformation was negligent. The

last sentence I wrote summed up my point entirely:

" You have no idea how difficult it is for me and everyone else with

Still's to attempt to live a normal life, and the sad thing is that

neither will anyone who reads your article. "

I hope that she at least will know from now on not to misinform her

patients or other members of the medical community. At LEAST.

love melissa

xoxo

" Perhaps some of you would be willing to respond to it as well. If

she sees enough interest, perhaps that will do the trick. "

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

March 21, 2005

Add my name to the ones upset by the article. It just goes to prove

the doctors that really understand this disease are about as rare as

a case that is diagnosed within days and " over " in six months! I

have battled this disease for 11 years and 5 YEARS of prednisone

certainly didn't cure me. I guess I shouldn't have read the article

while I am in the midst of one of my worst flares ever. Oh, well...

Good wishes to all...

Rhonda

March 23, 2005

> Just a thought. I was very diplomatic in my email to her, so I

hope she will respond. It's important for us to remember that

Still's patients (as well as others who suffer from rare diseases

that are hard to treat) sometimes are the ones to educate the

doctors. I don't like doing it, had to do it last week when I was

in the ER, but sometimes we must.

>

> Have a good evening,

> Gail

Gail, I had to help my doc. get educated on AOSD. He was the one

that originally called what I had/have Still's, but he also said

that he had never worked with a Still's patient before. My doctor

was one of the bright spots that the dragon brought me. The other

was my relationship with God grew (and it's still growing, even with

me in " remission " )!

I can relate with the patient in this article, since it's been 6

months now since I was DX'd, and I'm doing great! But I also know

that this beast could just be taking an extended vacation. I hope

and pray that it's over, but only God know's for sure. I haven't

read the article yet, but I did print it out, and will read it later

today.

Rob

August 22, 2005

Very interesting. I am often short of breath, and on tests my lungs always show signs of hyperventilation.

And my husband keeps telling me that all I need to do is start breathing more deeply!

H.

In a message dated 8/22/2005 5:50:55 AM Eastern Daylight Time, asthma writes:

I found some rather controversial stuff on the section aboutbreathing trouble on this site. This doctor apparently is dead set against the use of bronchodilators. I found it bizarre and was wondering what other asthma patients thought.Kind regardsJudith HerbersCFS is Heart Failure Secondary to Mitochondrial Malfunctionhttp://www.drmyhill.co.uk/article.cfm?id=373

August 22, 2005

Very interesting. I am often short of breath, and on tests my lungs always show signs of hyperventilation.

And my husband keeps telling me that all I need to do is start breathing more deeply!

H.

In a message dated 8/22/2005 5:50:55 AM Eastern Daylight Time, asthma writes:

I found some rather controversial stuff on the section aboutbreathing trouble on this site. This doctor apparently is dead set against the use of bronchodilators. I found it bizarre and was wondering what other asthma patients thought.Kind regardsJudith HerbersCFS is Heart Failure Secondary to Mitochondrial Malfunctionhttp://www.drmyhill.co.uk/article.cfm?id=373

August 22, 2005

Very interesting. I am often short of breath, and on tests my lungs always show signs of hyperventilation.

And my husband keeps telling me that all I need to do is start breathing more deeply!

H.

In a message dated 8/22/2005 5:50:55 AM Eastern Daylight Time, asthma writes:

I found some rather controversial stuff on the section aboutbreathing trouble on this site. This doctor apparently is dead set against the use of bronchodilators. I found it bizarre and was wondering what other asthma patients thought.Kind regardsJudith HerbersCFS is Heart Failure Secondary to Mitochondrial Malfunctionhttp://www.drmyhill.co.uk/article.cfm?id=373

August 23, 2005

Hi Carol,

my pulmonary physical therapist taught me some breathing exercises

and also awareness of my breathing. He never tried to make me breathe

differently. I have found that now I automatically do some breathing

exercises such as slow long exhalation or exhaling in two steps,

whenever I feel that my breath is rapid and unsettled.

I agree with

you that it is important to do all you can to reduce the amount of

meds that you need. My pulmonologist focusses very strongly on the

importance of exercise, nutrition etc, along with the right meds. If

Buteyko and other breathing techniques have such spectacular results

wouldn't the pulmonary doctors advocate them. Are there people on

this list who have dramatic improvement (50-100%) directly linked to

these breathing techniques?

Kind regards

Judith

> Hi Judith:

> Take what I say with a grain of salt, since I'm new to all

this. I think there may be something to the theory that asthmatics

hyperventilate. I know that Yoga breathing exercises are supposed to

be very good, and they teach people to breathe deeply and slowly,

through the abdomen as opposed to through the chest. I am currently

reading a book called The Oxygen Breakthrough, which includes

breathing strategies. I haven't decided what I think of his method

yet, though, since I just started the book. I have read of the

Butyeko (sp) method but am suspicious because the proponents charge

to tell you how to breathe, which I think is ridiculous. There is

another method that I bumped into on the computer that doesn't

charge, and I haven't decided what I think of it yet. It is the 12

breathing exercises of Strelnikova. It's easy to find

through Google -- 2nd item.

> One thing I read on a medical site was that asthma involves

construction of the muscles as well as inflammation of the airway. I

think that one can work on the muscle construction without medicine --

or at least that's what I'm trying. I don't believe in stopping the

medicine, but using all resources.

> Carol

August 23, 2005