Complication of parkinson's disease? Forum

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teokimhoe Joined: 03 Mar 2007Posts: 17Location: Malaysia
Posted: Sat Oct 13, 2007 8:47 pm Post subject: complications of Parkinson's disease?

Parkinson's is the world second diseases. It not only involves body changes but also emotional mood. Therefore Parkinson's is body, mind and soul disease. It is so complicated that it's treatment involve different team of medical specialists. The under diagnose and late treatment by patients aggravate the stage of Parkinson's and complicate too. Kindly comment TEOKIMHOE_________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
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Neck and shoulder stiffness: Parkinson's

Posted: Wed Oct 10, 2007 4:07 am Post subject: Neck and shoulder stiffness : Parkinson's

I have neck and shoulder stiffness/ frozen/rigidity before I have Parkinson's.

I understand this is the first symptom of the Parkinson's.

Is it the cause of the instability bad posture because of Parkinson's?

Is it the only way doing neck and shoulder stretching besides medication? Kindly advise

TEOKIMHOE
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Wed Oct 10, 2007 7:41 am Post subject:

Dear Teo, This is outside my scope of practice as a dietitian; I can only speculate that the stiffness might be muscle tightness due to PD itself, or, as you suggest, alterations in posture. The ideal person to talk to would be a physical therapist, who can help you with exercises or stretching to help with the rigidity._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Thu Oct 11, 2007 5:12 am Post subject: Neck and shoulder stiffness : Parkinson's

I refer to my email for the above. I would like to share my experience one of the reason is my instability walking posture without both arms swinging. I have tried to correct and become a habit. Best regards TEOKIMHOE
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Thu Oct 11, 2007 7:17 am Post subject:

Teo, once again you are showing a proactive effort to combat the effects of PD. Lack of arm swing is common among people with PD and certainly contributes to unnatural body mechanics. Taking steps to be aware of this and correct it is a very good way to help combat the stiffness that results. Good for you for working this, and sharing with others._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Tue Oct 16, 2007 3:54 am Post subject: Neck and shoulder stiffness : Parkinson's

I refer to above article.

Besides doing arms stretching,walk upright and swing your arms if you could go down yourself in the pool three feet deep (below the surface of the water) to massage your body stiffness and rigidity for half an hour daily. Be accompanied by your helper in case you need help.

Make it a habit and enjoy your good quality of life. Lord bless TEOKIMHOE
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D B S surgeries In Malaysia by Dr.NK.Chew 1

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Message
Anonymous
Posted: Sun Sep 16, 2007 1:24 am Post subject: Discussion: Deep Brain Simulation Surgery in Malaysia

DBS was first carried out in Malaysia back in 2003, at Sunway Medical Centre, Kuala Lumpur (Dr Lee Moon Keen, Dr Chee Chee Pin, Dr Lee Foo Chiang). One year later, DBS was also started at University Malaya Medical Centre, Kuala Lumpur (Dr Vickneswaran, Dr Chew Nee Kong). So far, about a total of 20 Parkinson's patients in Malaysia have undergone DBS in these two local hospitals. Overall, the response to DBS has been encouraging. There has been significant improvement in symptoms (tremor and slowness of movement), reduction in dyskinesia and total daily dose of medications. Complication rate has been low. I saw with my own eyes how a few of my Parkinson's patients improved drastically after the DBS. Just imagine, prior to the arrival of DBS in Malaysia, I saw so many of my Parkinson's patients dying as a result of lung infection. The recent report on a successful DBS performed on another Parkinson's patient at University Sains Malaysia, Kubang Kerian, Kelantan, is really a giant leap forward in the history of Parkinson's care in Malaysia. Thus, the arrival of DBS in Malaysia is a good news to the Parkinson's community. The prevalence of PD in Malaysia is certainly not as high as that in North America and Europe, but we certainly have a sizeable Parkinson's population - estimated to be 15 000 Parkinson's patients. Of this, perhaps about 2000 patients (who are in the advanced stage of PD) would have benefited from DBS. But, it is sad that only about 20 Malaysian Parkinson's patients have been able to undergo this surgery locally. There are many reasons for this; a) lack of awareness on DBS as it is a new surgical procedure in Malaysia b) lack of funding - as DBS costs about RM80 000 for the first surgery and RM60 000 for each battery replacement, it is easily understood why most Parkinson's patients are reluctant to undergo DBS (most Parkinson's patients are retirees who have no permanent income). Furthermore, the Malaysian government has not set up any special funds for DBS. In contrast, in other countries such as United States and Europe, thousands of Parkinson's patients have successfully undergone DBS. When I was attached to the the Institute of Neurology, Queen Square, London, I saw the surgeons operating on about 2-3 Parkinson's patients per week. Therefore, there is much left to be done for the Parkinson's community in Malaysia - ignorance, misconceptions on PD, lack of neurologists / neurosurgeons and finally the financial difficulty (costs of medications and DBS are expensive). In Malaysia, there is a saying, "PD is a disease of rich people". I'd like to welcome comments from you and the colleagues from other countries (Kathrynn Holden, Dr Okun). Dr Chew Nee Kong, Neurologist, Kuala Lumpur, Malaysia.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Mon Sep 17, 2007 6:11 am Post subject:

This is a very important post. Dr. Fernandez launched a program called SUPPORT-PD this year and Dr. Rodriguez, Foote, and myself were part of the team. We worked with a 3rd world country (Philippines) for one year setting up a referral network and interdisciplinary surgical team. We then came and lectured for a week in the country, increased awareness and enthusiasm, and then helped do two DBS surgeries with devices donated.... Anyone interested in this tyoe of program should contact Dr. Hubert Fernandez (University of Florida) who has been the visionary and planner for such programs. There is as you pointed out a great need for awareness and access to care. Also we can teach lesion procedures which are cheaper and also effective._________________Michael S. Okun, M.D.
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Anonymous
Posted: Thu Sep 27, 2007 9:48 pm Post subject:

Dear Dr Okun Congratulations for the excellent job in the Phillippines. Unlike in North America and European countries, Parkinson's brain surgery is still quite unknown by the public in Asian countries. I know that DBS is quite well established in Taiwan, Japan, Thailand and Singapore. However, in other Asian countries, DBS is either not available or at the preliminary stage. Even in Malaysia, DBS is still new. Thus, it is good news that the Parkinson's patients in the Phillippines have also benefited from DBS. Dr Chew Nee Kong, Kuala Lumpur, Malaysia
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Fri Sep 28, 2007 7:18 am Post subject:

Thanks we really enjoyed visiting and helping!_________________Michael S. Okun, M.D.
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D B S Surgeries in Malaysia by Dr.NK Chew 2

Author
Message
Anonymous
Posted: Sun Sep 16, 2007 1:30 am Post subject: Deep Brain Stimulation Surgeries in Malaysia

DBS was first carried out in Malaysia back in 2003, at Sunway Medical Centre, Kuala Lumpur (Dr Lee Moon Keen, Dr Chee Chee Pin, Dr Lee Foo Chiang). One year later, DBS was also started at University Malaya Medical Centre, Kuala Lumpur (Dr Vickneswaran, Dr Chew Nee Kong). So far, about a total of 20 Parkinson's patients in Malaysia have undergone DBS in these two local hospitals. Overall, the response to DBS has been encouraging. There has been significant improvement in symptoms (tremor and slowness of movement), reduction in dyskinesia and total daily dose of medications. Complication rate has been low. I saw with my own eyes how a few of my Parkinson's patients improved drastically after the DBS. Just imagine, prior to the arrival of DBS in Malaysia, I saw so many of my Parkinson's patients dying as a result of lung infection. The recent report on a successful DBS performed on another Parkinson's patient at University Sains Malaysia, Kubang Kerian, Kelantan, is really a giant leap forward in the history of Parkinson's care in Malaysia. Thus, the arrival of DBS in Malaysia is a good news to the Parkinson's community. The prevalence of PD in Malaysia is certainly not as high as that in North America and Europe, but we certainly have a sizeable Parkinson's population - estimated to be 15 000 Parkinson's patients. Of this, perhaps about 2000 patients (who are in the advanced stage of PD) would have benefited from DBS. But, it is sad that only about 20 Malaysian Parkinson's patients have been able to undergo this surgery locally. There are many reasons for this; a) lack of awareness on DBS as it is a new surgical procedure in Malaysia b) lack of funding - as DBS costs about RM80 000 for the first surgery and RM60 000 for each battery replacement, it is easily understood why most Parkinson's patients are reluctant to undergo DBS (most Parkinson's patients are retirees who have no permanent income). Furthermore, the Malaysian government has not set up any special funds for DBS. In contrast, in other countries such as United States and Europe, thousands of Parkinson's patients have successfully undergone DBS. When I was attached to the the Institute of Neurology, Queen Square, London, I saw the surgeons operating on about 2-3 Parkinson's patients per week. Therefore, there is much left to be done for the Parkinson's community in Malaysia - ignorance, misconceptions on PD, lack of neurologists / neurosurgeons and finally the financial difficulty (costs of medications and DBS are expensive). In Malaysia, there is a saying, "PD is a disease of rich people". I'd like to welcome comments from you and the colleagues from other countries (Kathrynn Holden, Dr Okun). Dr Chew Nee Kong, Neurologist, Kuala Lumpur, Malaysia.
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Sun Sep 16, 2007 6:54 am Post subject:

Dear Dr. Kong, I am not a physician, and thus unable to contribute significantly to your very valid concerns re deep brain stimulation surgeries in Malaysia. However, might it be in part due to lack of a strong PD organization in the area? I cite the National Parkinson Foundation as an example; the NPF actively seeds support and donations in order to spread awareness of PD, education regarding special needs, and funding for research. I have noted that PD societies and associations in other countries, such as the UK, Canada, and Australia, have done similar work. If there is sufficient interest among families of those with PD, it would be worthwhile to form such an association. The NPF has materials to help start PD support groups, and from these often grow larger and more influential groups. Perhaps this might be a place to start._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Mon Sep 17, 2007 12:18 am Post subject: Deep Brain Surgery in Malaysia

Dear Dr. Kathrynne, Yes, I agree with you. It is a good idea to seek the help of a PD support group to raise funds for Parkinson's patients opting for DBS. Unfortunately, the awareness of PD in Malaysia is lacking, and thus it is still not considered an important illness. Consequently, the PD patients do not receive much support from the public. Dr Chew
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Anonymous
Posted: Mon Sep 17, 2007 3:21 am Post subject: Public awareness of Parkinson's Disease in Malaysia

In reply to your email there are 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 suffereres. Besides PD suffereres themselves do not understand the onset of illness. Some notice the slowdown of physical movement without knowing the exact cause. In view of the above there are poor response and support i.e manpower, financial aid, public media for the setting up a PD organisation or caregroups . TEOKIMHOE
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Mon Sep 17, 2007 9:04 am Post subject:

Dr. Kong, if you will click on "NPF Home" at the top of your screen, you will find the home page of the National Parkinson Foundation. From there, you can click on "Find Resources" for help starting a support group locally. You can also click "Contacting us" and send a message that will be directed to the person best able to answer. It may be that there is someone who can give you help in this regard. My very best wishes, Kathrynne_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Anonymous
Posted: Mon Sep 24, 2007 3:43 pm Post subject: Deep Brain stimpulation Surgeries in Malayis

Dear Kathrynne Thank you for your advise. The truth is that managing Parkinson's Disease in Malaysia is really challenging. Many people do not know much about this illness, and also its impact on the life of patients. That is why it is so difficult to get funding for brain surgery. Three years ago, I arranged for a newspaper interview for a Parkinson's patient who was going for brain surgery (Deep Brain Stimulation, DBS) at my hospital. One year after the appeal for public donation was published in a local newspaper, only about RM15 000 was collected (she needed RM80 000 for the DBS). So you can see that PD is not regarded as an important illness in Malaysia. Dr Chew Nee Kong, Kuala Lumpur, Malaysia.
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Sep 25, 2007 8:59 am Post subject:

Dear Dr. Kong, Yes, it does appear that there is less understanding of PD in Malaysia than in the western countries; although, to us it seems that there is sadly little awareness here. I do encourage you to continue contact with NPF, as they may be able to direct you to ways to form local support groups. This is an excellent way to begin the process of increasing education, understanding, and awareness of PD, and this can lead to donations, grants, and other types of funding. You can go to the NPF home page and click on "Contact Us" to send your requests by email._________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Exercise and Movement; Sharing Forum

Message
Anonymous
Posted: Wed Oct 10, 2007 12:41 am Post subject: Exercises and Movement

I wish to share my experience while I am doing my exercise at Fitness Centre. As Parkinson's patient I found my breathing is too slow to catch up my body movement therefore I feel tired easily than the normal person. Exercise is good for Parkinson's patient however PD patients needs help to practise a skill: relaxation exercise to loosen the muscles and movement. TEOKIMHOE
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Wed Oct 10, 2007 8:29 pm Post subject:

Thanks for sharing your experience!_________________Hubert H. Fernandez
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Anonymous
Posted: Thu Oct 11, 2007 3:41 am Post subject: Exercise and Movement

Would appreciate if you could enlighten me on the reason for my experience in slow breathing during exercise. I also found difficulty in resting my weight on my heels while doing squat exercises. When my weight is supposedly rested on my heels, I find it difficult to raise my toes simultaneously. Your clarification will be most appreciated. TEO KIM HOE
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Anonymous
Posted: Thu Oct 11, 2007 5:28 am Post subject: Exercises and Movement

I refer to the my article. One of the reason for in coordination standing between the toes and heel are the incorrect right position. Both feet must be standing straight to right position to support the coordination on toes and heel movement exercises. It is important to be a habit in our life. Best regards TEOKIMHOE
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What is the behaviours of an early PD patient?

Posted: Sun Apr 08, 2007 10:21 am Post subject: Q: What is the behaviours of early PD Patient? --------------------------------------------------------------------------------

The behaviours of early PD patient as follows:

When do I tell others, and what do I say?

Whether to tell " is a question posed by many people in the early stage of PD disease.

1. Is it jeopardize my job?

Don't let other people feel sorry for me and for my children? 2. Keep it yourself as secret and privacy and once it reveals you feel sorry as you cannot take it back. 3. I feel relieve as I tell out and I could get some support. 4. It is hard to keep it secret as PD is a' going on disease ' and the tension of hiding it. 5. It helps more people to aware the diseases and encourage more support group i.e fund raising for the fund and learn to manage the disease and feel you are not alone. TEO KIM HOE
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wolfJoined: 08 Apr 2007Posts: 50
Posted: Thu Apr 12, 2007 7:54 am Post subject:

Hello, I noticed you come from Malaysia, To answer your questions I would need to know the customs and culture of your society. Only you can judge whether to open up or not. Here in America it is good to tell people of our PD, but not to overwhelm them or cry our troubles. There is always a balance between what is appropriate to tell and what to keep to yourself, and this is depending on the culture. Peace Jack
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Lipsticks contain lead?

Lipsticks contain lead, US consumer group says
ATLANTA - LIPSTICKS tested by a United States consumer rights group found that more than half contained lead and some popular brands including Cover Girl, L'Oreal and Christian Dior had more lead than others, the group said.
The Campaign for Safe Cosmetics said on Thursday tests on 33 brand-name red lipsticks by the Bodycote Testing Group in Santa Fe Spring, California, found that 61 per cent had detectable lead levels of 0.03 to 0.65 parts per million (ppm).
Lipstick, like candy, is ingested. The Campaign for Safe Cosmetics, a coalition of public health, environmental and women's groups, said the FDA has not set a limit for lead in lipstick.
One-third of the lipsticks tested contained an amount of lead that exceeded the US Food and Drug Administration's 0.1 ppm limit for lead in candy - a standard established to protect children from ingesting lead, the group said.
Thirty-nine per cent of the lipsticks tested had no discernible lead, it said.
'It's critical that manufacturers reformulate their product,' said Ms Stacy Malkan, a co-founder of the coalition.
'It's possible to make lipsticks without lead, and all companies should be doing that.'
Lead can cause learning, language and behavioural problems such as reduced school performance and increased aggression.
Pregnant women and young children are particularly vulnerable to lead exposure, the group said in its statement. Lead has also been linked to infertility and miscarriage, it said.
Procter & Gamble's makes Cover Girl brand and France's L'Oreal is one of the largest cosmetic companies in the world.
Over the last three months, more than 20 million toys made in China have been recalled, mostly due to the use of lead paint.
The coalition said that some less expensive brands it had tested, such as Revlon, had no detectable levels of lead, while the more expensive Dior Addict brand had higher levels than some other brands.
The Cosmetic, Toiletry and Fragrance Association trade group said in a statement that lead was a naturally occurring element that was not intentionally added to cosmetics.
The FDA has 'set strict limits for lead levels allowed in the colours used in lipsticks, and actually analyse most of these to ensure they are followed', the association's statement said. 'The products identified in the (CSC) report meet these standards.'
L'Oreal's US arm said its products are reviewed and tested by a safety team that includes toxicologists, pharmacists and doctors.
'All the brands of the L'Oreal Group are in full compliance with FDA regulations' as well as safety requirements in international markets, L'Oreal USA said in a statement.
P&G said in a statement that the quantity of lead a consumer might be exposed to from its lip product 'is hundreds of times less than the amount that she would get from eating, breathing and drinking water'.
'Lead builds up in the body over time and lead-containing lipstick applied several times a day, every day, can add up to significant exposure levels. The latest studies show there is no safe level of lead exposure,' said Dr Mark Mitchell, president of the Connecticut Coalition for Environmental Justice. -- REUTERS