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Parkinson’s Day get-together in PJ
Friday May 9, 2008
Parkinson’s Day get-together in PJ
IN A tribute to the late Lloyd Tan Pao Chan, founder and former life president of the Malaysian Parkinson’s Disease Association (MPDA), the local Parkinson’s community will commemorate his birthday by celebrating Malaysian Parkinson’s Day tomorrow.
Tan, who was stricken with Parkinson’s plus syndrome, decided to change the life of the Parkinson’s community in Malaysia by starting the MPDA in 1994.
It was the first society of its kind in Malaysia, at a time when PD was hardly heard of in this country.
Heroes: The late Tan with his wife Yap Yun Kin.
His efforts have made a huge difference to many PD patients and their families, who now have a place to belong to, get support, as well as learn how to cope with the disease.
Today, 18 years later, many Malaysians remain ignorant of the debilitating disease.
The cardinal symptoms of PD such as slowness of movement and trembling of hands are commonly misunderstood as “natural ageing process”.
As such, among the estimated 15,000 Parkinson’s patients in Malaysia, only two-thirds of them are diagnosed and treated.
The remaining 5,000 Parkinson’s patients are left on their own, suffering from the “natural ageing process”. And although there have been rapid advances in the treatment of PD (new medications and brain surgery) overseas, treatment in Malaysia remains pessimistic.
Many Malaysian PD patients are confined to their homes. They cannot work, drive and go overseas for holidays because of under-medication. Because of high costs, brain surgery is also not a viable alternative for these sufferers.
In an effort to increase awareness about PD, as well as to honour the life work of Tan, all Parkinson’s patients and their caregivers are invited to attend Malaysian Parkinson’s Day tomorrow at the Crystal Crown Hotel in Petaling Jaya, from 12.30pm to 3pm.
The Selfless Warrior, a book about Tan, his battle with Parkinson’s as well as his achievements will be launched at the event. It is written by neurologist Dr Chew Nee Kong.
At the event, funds will also be raised for the Lloyd Tan Trust Fund to provide financial assistance for those who require brain surgery.
Proceeds fro0m the sales of this book will also go to the trust fund.
For details about the event, call Patricia Ho at 03-40240060
Trust fund set up to help Parkinson’s Patients
Parkinson’s patients
By CHOONG MEK ZHIN
PATIENTS suffering from advanced stages of Parkin-son’s disease (PD) can now look forward to financial aid for brain surgery from the recently launched Lloyd Tan Trust Fund.
“Only 25 Malaysians have undergone the surgery locally over the past five years. Most are unable to because of the high cost and there was little or no aid given to PD patients,” Pantai Cheras Medical Centre consultant neurologist Dr Chew Nee Kong said.
Dr Chew said that the first surgery cost RM80,000 and an additional RM60,000 every three to five years for the device’s battery replacement.
PD is a progressive nervous disorder that causes tremors of the hands as well as the general slowness of body movement and stiffness.
United: The late Tan’s wife Yap Yun Kin (centre with spectacles) surrounded by PD patients and Negri Sembilan Parkinson’s Society president Gharizah Hashim (yellow baju kurung) cutting a cake commemorating the first ever Malaysia Parkinson’s Day that falls on May 8.
It can affect people of all ages from as early as 30s though it is generally an illness of the elderly.
An event commemorating the late Tan who passed away in March last year was organised by Pantai Cheras Medical Centre in collaboration with GlaxoSmithKline.
The event also saw the launch of the trust fund’s website and the book Selfless Warrior.
“The book was written as a tribute to Tan’s life. He was a man who had suffered not from PD but Parkin-sonism Plus Syndrome that is exactly like PD except that it is 10 times worse. He is an inspiration and icon of perseverance to others,” Dr Chew said, adding that the proceeds from the book sales will go to the trust fund.
He added that the book also had information about PD and gives readers insight into the neglected plight of Parkinson’s patients in the country.
Dr Chew believes that PD patients should not give up on life, as most of them are still able to lead a relatively normal life despite the illness as what Tan, the founder and first president of Malaysian Parkinson’s Disease Association (MPDA), had done.
“Patients are still able to do a lot of normal things like travelling, driving, working and such with the help of medication and of course, Deep Brain Stimulation surgery,” Dr Chew said.
He added that PD patients found this difficult because they had developed a social stigma and fear of others staring at them. “Tan is our icon because he had not been afraid to show himself to the world,” he said.
For more information on the trust fund, visit the website at www.lloydtan-trust.com
A Sad story of parkinson’s family
i heard you are going to seek a second opinion from another doctor. Im really thankful for the time and effort that u spend on my dad. I shall now give ya a brief summary of my dad’s illness. Basically: 1) In accordance to his doctor and you, he indeed suffers from PD. He has difficulty carring out his daily activity like walking short distances or even remain seated for a short period of time. He was given MADOPOR( 250 mg 0.5 a tablet, 3 times a day) and LEXOTAN( 1.5 mg 0.5 a tablet, 3 times a day) from the doctor. I believe my dad does suffer from PD but i am not very convinced by your claim that he has reached the later stages of PD. Yes, i agree that PD runs in a family as it is hereditary. However, i do not believe that my dad’s condition is like what u claim- the later stages. Reasons to support my humble opinion: Firstly, my dad indeed has got limitations to his movements. However, on certain occations, he has the ability to get up from the bed or even walk short distances without any help from anyone. This shows that my dad’s condition is not as severe as you have claim (ie only have got 6 mths to live?!) Moreover, my dad is able to carry out most of the task that his physical trainer asked him to do. For example, he is able to walk to the NTUC outside our house with the trainer, or even have luch with his family members. He often complain tightness of his stomach when seated down for too long. In my opinion, I conclude that my dad is indeed surrfering from PD. Its in fact rather common that many patients develope symptoms before the age of 50, especially if PD runs in the particular family. However, my dad’s condition is not as bad as what many may think. My dad definitely lacks CONFIDENCE. He always has this fear that he will fall to his death. Its due to such unnecessary fear that he has which causes him to lose canfidence in himself, thus losing to PD too! We, as his family members have put in tremendous effort for him to build up his confidence, but our efforts were in vain. Should he not be able to get over his own fear, how can one help him? My dad too may be suffering from IBS. This problem also comes with age. As a person age, their muscles will definitely weakens while some may just lose their functions. However, this issue is no long posing to much of trouble to him as we moninter his diet closely, with the help of his physical trainer of cos. He consumes other suppliment such as Methycobal( a form of vitamin) and S- Factor. Occasionnally, he still suffers but constipation but is not as frequent compared to the past.In addition, my dad’s back problem may have also affected his bowls movement. My dad too show symptoms of depression. He is always very negative and also says that he will die anytime. As we are his family members, we shower him with much love and concern as we know that the love from his family members means a lot to him when he is suffering from depression. However, there are many times whereby he completely shut off our care and concern for him. For example, when we wan to dine out on a particular day, he would always just want to stay at home and not leave home no matter how we persuade him. Many of his relatives drop nasty comments saying that ‘ we neglect him’, ‘only wans money from him’ , ‘wan him to die’ and i believe U heard much more. Are such comments necessary? I do not think so. Should we not care for him, would we even try to cheer him up everyday? Would my mum always pray for his health without fail every day? Would his children buy his fav food (expensive cake) for him? Trust me, the list could really go on and on. If we are like what THOES SINNERS claims, we could have just jolly well throw all responsiblity to the trainer and maid and not give a DAMN to anything. Did we? Definitely not. Im really thankful that you care so much for my dad, i am also saying thank you on his behalf. I may have wasted much of your precious time, however, I really need to clarify things and not let my poor mother being labled as a lousy wife when she has done so many ‘behind the scene’ stuff for my dad. I would be anticipating the opinion of another doct regarding my dad’s condition. Hope to hear from you soon! Regards Hon Wei
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RichardJoined: 18 Aug 2007Posts: 38
Posted: Sat Sep 01, 2007 5:40 am Post subject:
You are a wonderful daughter. Your love and concern for your Dad pour through your words. He is fortunate to have you in his corner. I understand your Dad. There are days I feel the same, like I will fall to my death or have nothing good to say. So far. I am able to keep these thoughts private…away from my family. There may be a time when these feelings show through though. I hope not, but cannot know. I am amazed by your strength. There is a part of him that realizes the sacrifices you are making on his behalf. Don’t let his disease become who you are. His disease is not who he is.
Urination and parkinson’s
Urination and Parkinson’s
Posted: Mon Oct 29, 2007 10:25 am Post subject: Urination and Parkinson’s
I have experienced a lack control as far as urinationis concern. Firstly, when I am in the midst of urinating, I am unable to hold back or stop halfway through. Secondly, when I feel the need to unrinate I must go to the toliet immediately. I will not be able to hold back at all. I have seen Urinogist and was told my PSA is normal though I have slight enlarged prostate gland. My medication: 1 Capsule Detrusitol SR 4 mg and one dose Harnal 0.2mg taken after breakfast daily. Kindly clarify whether the above is it related to Parkinson’s Disease? If it is please explain why and how this affects my problem of urination? Is it ageing process? Combination cause of enlarged Prostate gland and Parkinson’s? Thanks TEOKIMHOE
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Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Mon Oct 29, 2007 11:42 am Post subject:
I do not believe is a result of the PD and is more likely a result of enlargement of the prostate, quite common in men over 50y/o._________________Ramon L Rodriguez, MD
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Anonymous
Posted: Tue Oct 30, 2007 2:20 am Post subject: Urination and Parkinson’s
In reply to the above articles my Urinologlist told me it is related with Parkinson’s and not the cause of prostate gland as it is a slight enlargement . Besides My PSA is at normal level as I have gone blood test. Parkinson’s is a movement disorders and discharge of urine is part of movement. Therefore it is dopamine in the brain and stimulate the brain cells to funtion normally. Kindly advise TEOKIMHOE
Back to top
Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Tue Oct 30, 2007 9:06 pm Post subject:
TEOKIMHOE Rule number one in PD: Do not assume (or let any other person assume) that everything that happens to you from now on is a result of PD. I have seen many PD patients with medical problems related to other body systems not treated on time because they were originally blamed on PD. Now, some patients with PD may have some autonomic insufficiency, and as a result may have incomplete emptying, usually in the more advance stages of PD (earlier in some patients with PD plus symptoms). When problems of this sort occur in early PD patient, I just cannot blame it on the PD. Could it be? Sure, but it is not the norm and I prefer to make sure that I am not missing any potential treatment becasue I am assuming that everything that occurs is a result of PD. Hope this helps. MEds like FLomax or Detrol may help._________________Ramon L Rodriguez, MD
Back to top
Anonymous
Posted: Wed Oct 31, 2007 3:45 am Post subject: Urination and Parkinson’s
In fact there are 27-29% of PD have bladder and urinary difficulties. Unlike bowel dysfunction which becomes motor feature at the early stage of PD urinary and bladder dyfunction with PD becomes evident at later stages of Parkinson’s. The primary function of the bladder is twofold- to store urine and then to empty the urine when it is convenient and socially acceptable to do so. The most common urinary symptoms experienced by people with PD are first the need to urinate extremely frequently and difficulty in delaying urination once the need perceived , creating a sense of urinary urgency. Therefore urinary problem is a feature amongst PD and they should not hesitate to bring these problems to the doctor and seek for treatment. Awareness of their existence and recognition of their problems are the way to manage well. TEOKIMHOE
Back to top
Friday, May 9, 2008
A sad story of Parkinson’s family
i heard you are going to seek a second opinion from another doctor. Im really thankful for the time and effort that u spend on my dad. I shall now give ya a brief summary of my dad’s illness. Basically: 1) In accordance to his doctor and you, he indeed suffers from PD. He has difficulty carring out his daily activity like walking short distances or even remain seated for a short period of time. He was given MADOPOR( 250 mg 0.5 a tablet, 3 times a day) and LEXOTAN( 1.5 mg 0.5 a tablet, 3 times a day) from the doctor. I believe my dad does suffer from PD but i am not very convinced by your claim that he has reached the later stages of PD. Yes, i agree that PD runs in a family as it is hereditary. However, i do not believe that my dad’s condition is like what u claim- the later stages. Reasons to support my humble opinion: Firstly, my dad indeed has got limitations to his movements. However, on certain occations, he has the ability to get up from the bed or even walk short distances without any help from anyone. This shows that my dad’s condition is not as severe as you have claim (ie only have got 6 mths to live?!) Moreover, my dad is able to carry out most of the task that his physical trainer asked him to do. For example, he is able to walk to the NTUC outside our house with the trainer, or even have luch with his family members. He often complain tightness of his stomach when seated down for too long. In my opinion, I conclude that my dad is indeed surrfering from PD. Its in fact rather common that many patients develope symptoms before the age of 50, especially if PD runs in the particular family. However, my dad’s condition is not as bad as what many may think. My dad definitely lacks CONFIDENCE. He always has this fear that he will fall to his death. Its due to such unnecessary fear that he has which causes him to lose canfidence in himself, thus losing to PD too! We, as his family members have put in tremendous effort for him to build up his confidence, but our efforts were in vain. Should he not be able to get over his own fear, how can one help him? My dad too may be suffering from IBS. This problem also comes with age. As a person age, their muscles will definitely weakens while some may just lose their functions. However, this issue is no long posing to much of trouble to him as we moninter his diet closely, with the help of his physical trainer of cos. He consumes other suppliment such as Methycobal( a form of vitamin) and S- Factor. Occasionnally, he still suffers but constipation but is not as frequent compared to the past.In addition, my dad’s back problem may have also affected his bowls movement. My dad too show symptoms of depression. He is always very negative and also says that he will die anytime. As we are his family members, we shower him with much love and concern as we know that the love from his family members means a lot to him when he is suffering from depression. However, there are many times whereby he completely shut off our care and concern for him. For example, when we wan to dine out on a particular day, he would always just want to stay at home and not leave home no matter how we persuade him. Many of his relatives drop nasty comments saying that ‘ we neglect him’, ‘only wans money from him’ , ‘wan him to die’ and i believe U heard much more. Are such comments necessary? I do not think so. Should we not care for him, would we even try to cheer him up everyday? Would my mum always pray for his health without fail every day? Would his children buy his fav food (expensive cake) for him? Trust me, the list could really go on and on. If we are like what THOES SINNERS claims, we could have just jolly well throw all responsiblity to the trainer and maid and not give a DAMN to anything. Did we? Definitely not. Im really thankful that you care so much for my dad, i am also saying thank you on his behalf. I may have wasted much of your precious time, however, I really need to clarify things and not let my poor mother being labled as a lousy wife when she has done so many ‘behind the scene’ stuff for my dad. I would be anticipating the opinion of another doct regarding my dad’s condition. Hope to hear from you soon! Regards Hon Wei
Back to top
RichardJoined: 18 Aug 2007Posts: 38
Posted: Sat Sep 01, 2007 5:40 am Post subject:
You are a wonderful daughter. Your love and concern for your Dad pour through your words. He is fortunate to have you in his corner. I understand your Dad. There are days I feel the same, like I will fall to my death or have nothing good to say. So far. I am able to keep these thoughts private…away from my family. There may be a time when these feelings show through though. I hope not, but cannot know. I am amazed by your strength. There is a part of him that realizes the sacrifices you are making on his behalf. Don’t let his disease become who you are. His disease is not who he is.
Back to top
Post subject: Patient’s with deficient sodium
http://forum.parkinson.org/forum/viewtopic.php?t=3513&highlight=parkinsons+deficient+sodium
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http://forum.parkinson.org/forum/viewtopic.php?t=3558&highlight=vitamin
Urination and Parkinson’s
Posted: Mon Oct 29, 2007 10:25 am Post subject: Urination and Parkinson’s
I have experienced a lack control as far as urinationis concern. Firstly, when I am in the midst of urinating, I am unable to hold back or stop halfway through. Secondly, when I feel the need to unrinate I must go to the toliet immediately. I will not be able to hold back at all. I have seen Urinogist and was told my PSA is normal though I have slight enlarged prostate gland. My medication: 1 Capsule Detrusitol SR 4 mg and one dose Harnal 0.2mg taken after breakfast daily. Kindly clarify whether the above is it related to Parkinson’s Disease? If it is please explain why and how this affects my problem of urination? Is it ageing process? Combination cause of enlarged Prostate gland and Parkinson’s? Thanks TEOKIMHOE
Back to top
Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Mon Oct 29, 2007 11:42 am Post subject:
I do not believe is a result of the PD and is more likely a result of enlargement of the prostate, quite common in men over 50y/o._________________Ramon L Rodriguez, MD
Back to top
Anonymous
Posted: Tue Oct 30, 2007 2:20 am Post subject: Urination and Parkinson’s
In reply to the above articles my Urinologlist told me it is related with Parkinson’s and not the cause of prostate gland as it is a slight enlargement . Besides My PSA is at normal level as I have gone blood test. Parkinson’s is a movement disorders and discharge of urine is part of movement. Therefore it is dopamine in the brain and stimulate the brain cells to funtion normally. Kindly advise TEOKIMHOE
Back to top
Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Tue Oct 30, 2007 9:06 pm Post subject:
TEOKIMHOE Rule number one in PD: Do not assume (or let any other person assume) that everything that happens to you from now on is a result of PD. I have seen many PD patients with medical problems related to other body systems not treated on time because they were originally blamed on PD. Now, some patients with PD may have some autonomic insufficiency, and as a result may have incomplete emptying, usually in the more advance stages of PD (earlier in some patients with PD plus symptoms). When problems of this sort occur in early PD patient, I just cannot blame it on the PD. Could it be? Sure, but it is not the norm and I prefer to make sure that I am not missing any potential treatment becasue I am assuming that everything that occurs is a result of PD. Hope this helps. MEds like FLomax or Detrol may help._________________Ramon L Rodriguez, MD
Back to top
Anonymous
Posted: Wed Oct 31, 2007 3:45 am Post subject: Urination and Parkinson’s
In fact there are 27-29% of PD have bladder and urinary difficulties. Unlike bowel dysfunction which becomes motor feature at the early stage of PD urinary and bladder dyfunction with PD becomes evident at later stages of Parkinson’s. The primary function of the bladder is twofold- to store urine and then to empty the urine when it is convenient and socially acceptable to do so. The most common urinary symptoms experienced by people with PD are first the need to urinate extremely frequently and difficulty in delaying urination once the need perceived , creating a sense of urinary urgency. Therefore urinary problem is a feature amongst PD and they should not hesitate to bring these problems to the doctor and seek for treatment. Awareness of their existence and recognition of their problems are the way to manage well. TEOKIMHOE
Back to top
Posted: Tue May 06, 2008 8:18 pm Post subject:
Dear Mr Teo Dr Rodriguez has made very important comments about the possibilities of co-existing problems in PD such as prostate gland enlargement, and bladder dysfunction due to the parkinsoonism-plus syndrome. The basic point is that we should not attribute all the symptoms to PD. Mr. Teo’s symptoms are most likely due to prostate gland enlargement, which was why I referred him to a urosurgeon. Dr Chew Nee Kong, Kuala Lumpur
flortinef and low blood pressure
Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Sat May 03, 2008 11:50 am Post subject:
Thank you for the question. My approach is to do one thing at a time. If you do one thing at a time, like stop the dopamine agonist and the dizziness subsides then you have your answer. Low blood pressure can be a symptom of PD and be worsened by PD meds. I always suggest 6-8 glasses of water a day, and sometimes compression stockings. In more severe cases after simplifying meds and eliminating other causes I may turn to midodrine or florinef and/or tensilon. You may speak to your doc about the above._________________Michael S. Okun, M.D.
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Anonymous
Posted: Sun May 04, 2008 8:06 am Post subject:
Dear Mr Teo Ropinirole and other dopamine agonists are good medications for PD, especially in the early stage. I have many patients who have done well with dopamine agonists monotherapy. However, till today, there is no ideal medication for PD. Even dopamine agonists (or any other PD medications) can cause a drop in blood pressure (postural hypotension), which causes dizziness and fainting attacks. Hope that the fludrocortisone that i prescribed you today will help bring up your blood pressure back to normal. Dr Chew Nee Kong, Kuala Lumpur. Posted by Hero Teo at 2:23 PM
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Anonymous
Posted: Tue May 06, 2008 2:25 am Post subject:
I agree with Dr.Chew that Ropinirole and other dopamine agonists are good medications for PD, especially in the early stage. Many patients who have done well with dopamine Though fludrocortisone will help some patients who has problem with dopamine agonists that lowering blood pressure and bring back pressure to normal but it causes me with dizzinness as I have irregular blood pressure level. Kindly advise Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Tue May 06, 2008 8:40 am Post subject:
My best advice is to meet with your doctor and honestly tell him or her your issues and together you can choose a plan that is best for you. Good luck._________________Michael S. Okun, M.D.
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Anonymous
Posted: Tue May 06, 2008 12:08 pm Post subject:
Thnk you for your advise. My Highest Blood pressure level is 201/95 and lowing down to 160/85 level with Florinef. Is it caused by anxiety as told by my doctor? I have stopped taking the Fludrocortisone as agreed by my doctor.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Tue May 06, 2008 6:32 pm Post subject:
Thanks for the post, we will leave the decisions as to cause and treatment to your doctor and wish you well._________________Michael S. Okun, M.D.
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Requip
I agree with Dr.Chew that Ropinirole and other dopamine agonists are good medications for PD, especially in the early stage. Many patients who have done well with dopamine
Though fludrocortisone will help some patients who has problem with dopamine agonists that lowering blood pressure and bring back pressure to normal but it causes me with dizzinness as I have irregular blood pressure level.
Kindly advise
Teo Kim Hoe