HeroTeo - The Parkinson’s Fighter

Tue Apr 17, 2007 6:04 am Post subject: Breathing with PD

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Dear Doctor,

In reply to your article “Weight Loss” with PD.

I understand Breathing difficulties with PD i.e tightness and contraction in the throat weaken muscles that control breathing .

The breathing is not in full i.e the chest wall doesn’t move i.e reducing sense of smell that dampen the appetites contributing the malnutrition.

Therefore people have PD find difficulty/ reducing sniffing i.e desperately difficulties breathing large amount of air. As the result PD patients have masked face ( muscle stiffness)

There are 40% at the older age die on pneumonia worsen made by PD itself.

Therefore PD is a Body, Mind and Soul disorders diseases.

Kindly comment.

Thanks

Teo Kim Hoe

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Dr. Okun

Joined: 19 Jan 2007
Posts: 251
Location: University of Florida
Posted: Tue Apr 17, 2007 6:47 am Post subject:

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In general breathing problems in PD are not prominent, although late in the disease we worry about immobility and swallowing dysfunction leading to aspiration pneumonia.

Earlier sometimes wearing off of medications can result in shortness of breath.
_________________
Michael S. Okun, M.D.

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Wed Aug 29, 2007 5:27 am Post subject: Public awareness of Parkinson’s Disease in Malaysia

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We have problems on the public awareness of PD in Malaysia.

There are reasons PD sufferers either under-diagnosis or late diagnosis of PD.

1. the lack of public awareness

Public are not well aware or informed about the early PD symptoms. This illness is widely under-recognized by our society and even among the medical personnel.Many sufferers of PD regard the early symptoms of PD as a natural ageing process and not a disease. When an elderly person starts to have slowness of movement and tremor, many people will have
this to say- ” I know you are slowing down.

2.the lack of Movement Disorders Specialists

PD sufferers have no choice but to see the general practitioners who may not familiar with the diagnosis of PD. As the result we have late or under diagnosis of PD sufferers. Besides PD sufferings themselves do not understand the onset of illness. Some notice the slowdown of physical movement without knowing the exact cause.

TEOKIMHOE

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Kathrynne Holden, MS, RD

Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
Posted: Wed Aug 29, 2007 6:18 pm Post subject:

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Teo, thank you once again for pointing out some of the many concerns that affect those with PD. And it is not only in Malaysia, unfortunately, but throughout the world. It is vitally important that the public and the world’s doctors become better aware of the symptoms of PD, so that people can get a proper diagnosis and treatment.
_________________
Best regards,
Kathrynne Holden, MS, RD
–
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/

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: Sun Jul 29, 2007 4:22 am Post subject: Speech Difficulties in PD

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Speech difficulty is very common among Parkinson’s patients (about 80%). Unfortunately, it is also one of the most neglected areas in the management of PD.

Medications are helpful. In fact, when one’s voice becomes softer and less clear, it is a sign of progression of illness. In this case, adding new medications and / or increasing the dose of existing medications is helpful.

Yes, speech therapy is also useful but there are probably less than twenty qualified speech therapist in Malaysia. There should be greater awareness on the important role of speech therapist in the management of PD.

Dr Chew Nee Kong, Kuala Lumpur.

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lmahler

Joined: 02 Apr 2007
Posts: 1

Posted: Tue Aug 28, 2007 4:41 pm Post subject: Speech Therapy for PD

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Our experience is that the medications and surgical interventions that can be so beneficial for limb movement don’t necessarily have the same consistency and extent of benefit for speech and swallowing so additional behavioral treatment is needed. Since 80-90% of people with PD will have speech and swallowing difficulties at some point I recommend considering receiving treatment earlier rather than later when it is easier to learn the techniques. Research data from PET scans has demonstrated changes in brain control during speech tasks following the administration of LSVT, an intensive behavioral voice treatment. Discuss these issues with your neurologist and at least get an evaluation to consider the options that are available to you.
_________________
Leslie Mahler, PhD, CCC-SLP
Assistant Professor
University of Rhode Island

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Tue Aug 28, 2007 4:07 am Post subject: Q: The progression in Parkinson’s disease

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The progression of Parkinson’s are as follows:

1. Honeymoon period

With the improvement in the syndrome of PD with drug treatment, sufferers of Parkinson’s generally do well during the first five to seven years of treatment.- the” honeymoon period”

2.The Progression in PD

The “honeymoon Period is rather Short-lived. After five to seven years of treatment with levodopa, sufferers of Parkinson’s will have increasing slowness of movement and tremor. The physical disability is due to the progression of PD itself, appearance of levodopa-resistant symptoms or development of motor complication.

TEOKIMHOE

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Kathrynne Holden, MS, RD

Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
Posted: Tue Aug 28, 2007 7:03 am Post subject:

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Again, thanks for the comments. I would mention, however, that treatments, including surgeries and medications, along with better understanding of the benefits of nutrition and exercise, have greatly improved the health and longevity of most people with PD.
_________________
Best regards,
Kathrynne Holden, MS, RD
–
For a Parkinson Tip of the Day

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Tue Aug 28, 2007 3:47 am Post subject: Q: complications of Parkinson’s disease

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I refer to Dr.Chew Nee Kong “understanding Parkinson’s disease” most sufferers of Parkinson’s eventually develop numerous complications especially during the last stage of the illness as follows:

a) motor complications

These complications are attributed to both progression of PD and long term sides effect of levodopa. Motor complications have been reported to occur in 50% of patients after three to five years of levodopa treatment.

These complications are as follows:

1,”wearing off ‘ effect

At early stage of the illness,patients generally feel good(the” on “period}gradually shorten with times and the patients have “wearing off” and need to take lavodopa more frequently than before.

2. Mental complications

More often mental complications are attributed to the PD drugs
hypoglycemia (low blood glucose) and electrolyte disturbances.

The mental complications are as follows:

a.Depression b,psychosis c.confusion 4.dementia

3.dysautonomia

a.constipation b. reflux oesophagitis and dysphagia

4. falls

5. sleep disorders

Sufferers of Parkinson’s develop numerous complications in addition to the problem with movement. The doctor alone is not enough to deal with the long list of complications of PD.

TEOKIMHOE

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Kathrynne Holden, MS, RD

Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
Posted: Tue Aug 28, 2007 7:00 am Post subject:

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Thank you for an excellent summary of PD complications.
_________________
Best regards,
Kathrynne Holden, MS, RD
–
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/

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Posted: Wed Jul 18, 2007 4:22 am Post subject: PD progression with times

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Dear Doctor,

My doctor Dr. Chew Nee Kong told me PD is a body,mind and soul diseases.

PD is very unique compared with all other nervous illnesses-
the patients have a lot of misunderstandings, emotional disturbances and uncertainties.The illness itself is highly technical especially medications. As such, inter-patient and doctor-patient communication is extremely relevant in managing this illness.

In this connection I was told by him that my body (movement,/agility’s) would aggravate with the times progression . No medicine would halt from it’s progression.

PD would come to every part of body movement due to neurological disorders. It is also to your non motor movement i.e. vision, speech, breathing, digestion, drooling of saliva, urinate , emotional disturbances and uncertainties.

TEOKIMHOE

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Dr. Fernandez

Joined: 20 Jan 2007
Posts: 90

Posted: Thu Jul 19, 2007 8:33 am Post subject:

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I agree.
_________________
Hubert H. Fernandez

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Anonymous

Posted: Mon Aug 13, 2007 4:23 pm Post subject: Doctor, Elaborate Please on your reply to this post

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Are you indicating in your reply to this post that in all patients, always, progression will occur so that all items noted in this description post is affected? I understood that everyone progresses differently with PD and that some may experience problems with vision, speech, non-motor functions, as well as freezing, balance and tremors - - but that others may experience less symptoms….that no one progresses the same. Please elaborate so I can better understand. Thank you.

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Dr. Okun

Joined: 19 Jan 2007
Posts: 251
Location: University of Florida
Posted: Thu Aug 16, 2007 7:43 am Post subject:

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Everyone with progressive neurodegenerative disease progresses. Everyone has a different progression rate which at this time we are unable to predict. We must further learn the differences in PD subtypes.
_________________
Michael S. Okun, M.D.

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Anonymous

Posted: Sun Aug 19, 2007 3:53 am Post subject: Parkinson progression with times

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The most important lesson that I have learnt from PD patients is that each and everyone of them is different from each other. Every PD patient progresses at different rates, and develops different combinations of complications.

Thus, we should always try to remember that the management of each PD patients must be individualized.

As each patient has different response to medications, I usually need at least two to four weeks before I am confident of the optimal dosage of daily medications.

Dr Chew Nee Kong, Kuala Lumpur, Malaysia

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Dr. Okun

Joined: 19 Jan 2007
Posts: 251
Location: University of Florida
Posted: Sun Aug 19, 2007 4:33 pm Post subject:

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Thank you for the wonderful comment and keep writing in!
_________________
Michael S. Okun, M.D.

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Anonymous

Posted: Fri Aug 24, 2007 9:26 pm Post subject: The progression and survival in Parkinson’s Disease

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I refer Dr.Chew Nee Kong” Understanding Parkinson”s Disease ” that the progression and survival in Parkinson’s Disease as follows:

The “honeymoon ” period

Following the improvement in the symptoms of PD with drug treatment, the early stage of PD patients generally do well during the first to seven years of treatment.- the “honeymoon ” period. Despite taking small and infrequent doses of medications patients can usually keep “going strong” in their daily life. In the “honeymoon period” there are still relatively adequate “reserve ” brain cells during the early stage of illness.

The progression in PD

Unfortunately, life is not that kind nor straightforward. The “honeymoon ” period is rather short-lived. After five to seven years of treatment with levodopa, PD patients will have increasing slowness of movement and tremor. The physical disability us due to the progression of PD itself, appearance of levodopa -resistant symptoms or development of motor complication

It is important to note that while levodopa relieves the symptoms and physical disability of sufferers of Parkinson’s it does not by itself slow down the progression of illness.

The improvement of survival of patients by levodopar is due to the reduced risk of getting bedridden.

In fact PD patients have a higher chance of dying of other common diseases of the elderly, such as heart attack and cancer, than succumbing to PD itself.

In short levodopa treatment improved the quality of life of sufferers of Parkinson’s even though is not a cure for PD. Thus PD should never be regarded as an old people’s disease for which nothing can be done.

TEOKIMHOE

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Dr. Okun

Joined: 19 Jan 2007
Posts: 251
Location: University of Florida
Posted: Mon Aug 27, 2007 12:24 pm Post subject:

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Thanks for the comments.
_________________
Michael S. Okun, M.D.

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Date: 4th August 2007

Time: 3 p.m to 5.00 pm

Venue: Function Room, 4th floor,Pantai Cheras

Program:

3.00 pm - 3.40 pm: Question and Answer session with Dr. Chew Nee Kong,Neurologist,

3.40 pm to 4.00 pm: Refreshment

4.00 om to 5.00 pm: Social interaction

RSVP : Farah 03 91322022

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Posted: Sun Aug 26, 2007 8:46 am Post subject: Q: New interest in an “old ” disease ?

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It is unfortunate that we find now there is a need more movement disorders specialists to relieve the sufferers of Parkinson as Parkinson diseases is not a disease of the elderly.
Despite being an “old” disease, PD is still a “new” disease in the eye of Malaysian Public.

Many sufferers of Parkinson’s regard the early symptoms of PD as a natural ageing process and not a disease.

We have to highlight the persistent agony of sufferers of Parkinson’s that most Malaysian are not aware of. The “no hope” image of PD due to ignorance - many are not well aware of the remarkable advances in treatment of Parkinson’s.

TEOKIMHOE

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Kathrynne Holden, MS, RD

Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
Posted: Sun Aug 26, 2007 9:07 am Post subject:

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Thank you, Teo, for an important reminder — not only for Malaysians, but for all countries. PD is still greatly misunderstood by most people.
_________________
Best regards,
Kathrynne Holden, MS, RD

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Kathrynne,

I was about to “register” for your new Forum, when I decided to go back =
and
read the only other Reader Input that you posted today. It was the one
about another Reader’s dilemma regarding her husband’s balance. The =
VERY
WISE answer was from David P, of course. =20

I also have noticed that stopping and slowly trying to figure out how to
balance my body has given me much better confidence in how to navigate
myself during these past few days, wherein the weather has been =
slightly
horrendous with snow storms, ice build–ups, and what have you. Talk =
about
stressful pushing of my body’s capabilities! This is after thirteen =
years
of suffering with PD! Please note, that I had three plus wonderful, post
surgical years in the Spheramine Protocol Clinical Trial (Being Patient =
No.
1 in the Stage 2 Trial.) The benefits are either wearing off or I am
overloading my system with stress. So, I have begun backsliding a bit =
and
am now having the intermittent freezing again. Also a bit of imbalance
again.=20

I find that David P.’s suggestions are very wise. Also I believe that =
Teo’s
periodic suggestions have great wisdom in them! His are =
“observational,”
his having PD himself. Like me, he only offers his experiences of what
seems to work for him.=20

David P. has taken me on as a friend /patient of sorts. He is one of =
the
most non-aligned thinkers I have had the luck to run in to. Like Teo, =
Pat
W., and a few others whom I have had the good fortune to meet thru your
Digest, my life has been greatly benefited! That is why I end my =
missives
to you with “God Bless.” I am not a religious fanatic, but I do know =
how to
see the hand of Godliness in everybody’s vectoring around you, dear
Kathrynne.

So, thanks for the “Forum.” I am, like a wobbly Don Quixote, riding off =
to
see how to utilize your new base for informational thoughts that may, no
WILL, help other sufferers climb back up out of this hell hole we are
wallowing in. It is not an ILLNESS. It is a condition that could be
reversible. Like the Pritikin Promise gave hope and remedy to those who
suffered severe angina, there is a solution to our condition. I am more
firmly convinced than ever that the root cause of our c condition is
Peripheral Arterial Disease, like with leg cramps. But what it does to =
us,
with our particular DNA weakness/vulnerability is that the resulting =
oxygen
depravation starves our neuron cells. Therefore, no dopamine. All stem =
cell
advances will only provide a temporary fix. It is blending the infusion =
of
the stem cells, PLUS a reworking of daily regimen that will keep our =
motors
in good condition. (Note, even if Glenn’s amazing IV drip of umbilical =
cord
fluids gives him amazing relief of symptoms, it will ultimately play =
out,
without a supplemental repair of the toxins that originally triggered =
his
PD. The Pritikin Promise only worked/works for the followers who
worked/work the program religiously.

As a society, we have a lot of reorganizing to do re: our daily living
habits vs. choosing new habits that are more beneficially supportive of =
our
well being. It is certainly a wonderful time to be alive!=20

God Bless, Kathrynne, and Teo, et al… See you on the Forum!

Terry
[Terry George Hoffman]=20

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Posted: Tue Aug 21, 2007 5:02 am Post subject: Q: Managing related symptoms

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As PD patient has related diseases that he/she may not respond well with PD medication or it may be caused by PD medications itself

The related diseases that PD patient experience as follows:

1. Drooling, 2. Low blood pressure 3.Cramps and Aches 4.Sleep problems 4. Depression, 5. Hallucinations and Dementia

When these or other symptoms occur, doctors and medical professional should be informed.

TEOKIMHOE

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Kathrynne Holden, MS, RD

Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
Posted: Tue Aug 21, 2007 8:28 am Post subject:

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Thank you, Teo, I agree 100 percent!
_________________
Best regards,
Kathrynne Holden, MS, RD

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