Thursday, July 31, 2008

Forum: Is Parkinson's not a bad disease and is easy to control?

Dear Doctor,
I was diagnosed as a Parkinson's patient in the year of 2005.
Besides medications I do exercises in the gym daily. I spend two hours in the gym and I have two personnel trainers who help me to strenghten my physical mobility and body flexibilities.
I do yoga,body combat,pump, Box and kick exercise and cardio training.
I am normal and don't look like anything is wrong actually had been told by my doctor, physical trainers and members of my family. Though it is expensive to battle.
Is Parkinson's not a bad disease and is so easy to control?
TeoKimHoe

http://www.patient.co.uk/showdoc/23068879/

PeterMidJoined: 20 Jun 2008Posts: 12
Posted: Fri Aug 01, 2008 6:30 am Post subject:

Teokimhoe

You are joking, aren't you? I excercise as much as my PD allows, and that isn't very far, I'm afraid. A walk of 150 metres is about my limit, and even then, my legs are on fire and the Oedeema is bursting eruptions through my skin. Dbviously, you work hard on your personnal fitness and I admire you for that, but to suggest PD is not a bad pox is a little extreme. What about my Diabetes? Is that not a bad disease too? Pokermid


PeterMidJoined: 20 Jun 2008Posts: 13
Posted: Fri Aug 01, 2008 7:32 am Post subject:

Oh, and by the way Teokimhoe. In the UK, personnal fitness trainers charge £50 per hour 2 x trainers for 2 hours = £200 GBP or $400 USD 7 Days = £1400 GBP or $2800 USD 1 Year = £72,800 or $145,600 USD pokermid
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teokimhoeJoined: 03 Mar 2007Posts: 106Location: Malaysia
Posted: Fri Aug 01, 2008 7:59 am Post subject:

Dear Pokermid Am I joking? Certainly not. It's obvious that you did not get the gist of my message, do you? The point is that for people suffering from PD, you could at least have the option of adjusting your lifestyle to control the advancement of the disease. Working out regularly and correctly is a way of slowing down the effect of the disease. As compared to other diseases, whose advancement are somewhat beyond your control, eg. cancer whereby save and except for very few, you will die pretty soon. In such a sense, definitely PD is a "better" disease to have. Of course given the choice, nobody would want to be suffering from any disease right? If 150 metres is your limit, I pity you. Obviously you have not been taking care of yourself well enough. Diabetes is again a result of your lifestyle. That is your own choice!!! It obvious that your lifestyle has been downright unhealthy. Too much sugar intake eh?? Working out in the gym is again an option. If you can't afford it, you can always work out elsewhere. Nobody says that working out must be limited to the gym or expensive!! My advice to you is grab a hold of your life and turn it around, rather than displaying such negative attitude. Embark on a healthier lifestyle and you will see the results._________________

CatsPajamasJoined: 06 Aug 2008Posts: 1
Posted: Wed Aug 06, 2008 5:43 pm Post subject: geez...

Perhaps this forum should be monitored. I can see why so few post here. The tone is confrontive, to say the very, very least.
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From my experience, I have learnt that all Parkinson's patient is different from each other, in many aspects such as symptomatology, rate of disease progression and response to treatment. Managing my Parkinson's patients has been made easier by respecting the differences between each Parkinson's patients - there are no "two Parkinson's patients who are identical". One day, a man came to my clinic and asked me why his 62-year-old wife, who suffered from Parkinson's, could hardly walk despite having the illness for only four years. "I read an article in the newspaper which described how an elderly Parkinson's patient, who had been having the illness for twelve years, was doing some rather strenous exercises in a gym. How come my wife can't do even 5% of this exercise?" he commented. As I have treated his wife for about six years, I could easily understand why she behaved so differently from the other "super-fit" Parkinson's patient. His wife suffered from severe anxiety and depression, while her Parkinson's was actually quite mild. In other words, what "crippled" her was her mood disorder, and not the Parkinson's. Almost all the time, she would just lie on the bed or sit on a chair. Whenever her husband tried to help her to stand up, she would complain of dizziness and feeling like falling down. In addition, she had numerous other symptoms such as blurring of vision, numbness of hands, palpitation, etc (which were the symptoms of anxiety). Her social life was almost zero - she stayed at home all the time and even refused to follow her children to the restaurant. Thus, an important factor that contributes to the varying response to treatment is co-existing psychiatric disorders. Most Parkinson's patients have anxiety or depression or both, in varying degrees, which I think are partly due to difficulty in accepting their illness (i.e. Parkinson's). Some Parkinson's patients are devastated by Parkinson's while others are crippled by the psychiatric disorders (anxiety / depression). Unfortunately, psychiatric disorders in PD are very often neglected by both the patients and doctors. Mr Teo is fortunate that he does not have any psychiatric disorder. In fact, he has a very unusually "outgoing" personality, which most Parkinson's patients do not have. Mr. Teo is an optimistic person who has accepted his Parkinson's, and he always tries his best to cope with his illness. It is this "optimistic" personality that has made him so different from other Parkinson's patients. Dr Chew Nee Kong, Kuala Lumpur.



wheelersceJoined: 02 Mar 2007Posts: 503Location: MI
Posted: Mon Aug 11, 2008 6:11 am Post subject:

Hi, CatsPajamas, Its true that this exchange seems confrontive. But like any group of people, we on this forum have a range of personalities and styles. Please add to the discussion, the way you would like to see it. I'd like to know you better--haven't seen you post before. Sue W.


cfinlaysonJoined: 29 Jun 2007Posts: 125
Posted: Mon Aug 11, 2008 10:16 am Post subject:

Hi CatsPajamas, It is nice to see your name on this forum. Like Sue said, this forum has a range of personalities, but we have all agreed to disagree at times. When it comes down to it, we do lean on each other to help us through the hard times. Some of us lean on the Lord and some of us have other ways of dealing with this disease, but we are all in it together. I know that I keep us all in my prayers every night. So please, post and let us know more about you. Candy
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wheelersceJoined: 02 Mar 2007Posts: 513Location: MI
Posted: Sat Aug 16, 2008 6:57 am Post subject:

Gautam, I was very disturbed by this response to Peter. Whether Teokimhoe or Dr. Chew wrote it, pouring out guilt on us PWPs is hardly the best encouragement. Good to see you. Sue W.
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PeterMidJoined: 20 Jun 2008Posts: 17
Posted: Sat Aug 16, 2008 7:46 pm Post subject:

No more Heroes No need to worry about Pokermid, Teo’s a hero right out of the ID. Could he be Batman, crusader of right Maybe Darth Vader whose just seen the light. Silver with surfboard? Or is he the Thing? Mr Fantastic with his rubber ding!!! What of the Lantern with green in his eyes, Or is he Clark Kent without his disguise? Could he be Hulkster who bounds through the air, Is he the Devil in red and can Dare. No-one can see the invisible man, Only Sue Richards who probably can. Is he the X-man we know as Cyclops, Is he Dick Fosbury with his famous flops. What about Spidey who likes spinning webs, Or is he James Bond who romances Debs. Could he be Torchy who “flames on” in 4, Could be a Viking that we know as Thor. OR IS HE Homer, the Simpson not Greek, Eating a donut like a little geek What is the matter with Teokimhoe, Or is he really American Joe. Chip on his shoulder? It sounds like to me, Who is this Hero? Oh who could it be? Pokerman
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PeterMidJoined: 20 Jun 2008Posts: 17
Posted: Sat Aug 16, 2008 8:06 pm Post subject:

he's probably just a "Family guy"
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teokimhoeJoined: 03 Mar 2007Posts: 108Location: Malaysia
Posted: Sun Aug 17, 2008 3:50 am Post subject:

The main purpose of my entries is to share my experience with sufferers of PD, and to get across the message that you alone can make a difference to your life by turning it around, as in my case, exercising correctly. Everybody has their own ways of expression, some confrontational and some more diplomatic. But the intention still remains the same, that is to share my experience with the hope that it may help others. If you think this is a laughing matter by throwing scorn around and making fun of others, so be it. As far as I am concerned, this matter is closed._________________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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GautamJoined: 01 Mar 2007Posts: 84Location: Goa, India
Posted: Mon Aug 18, 2008 12:26 am Post subject:

Teo, Sorry if I sounded rude in my post. While we all appreciate your contribution, you do have to keep in mind that PD symptoms and progression differs from person to person. While on one hand we have John Ball who participates in marathon runs despite having PD for almost 3 decades, we also have Peter and several others, including me, who have difficulty in exercising and walking. I used to walk 5 kms daily, today after walking less than half a Kilometre my ankles start twisting and gives away and I am unable to even return back home! What Peter was trying to point out was that PD is also an expensive disease, and not everybody can afford personal fitness trainers. Imagine my plight, we do not have Social security in India and the cost of medication, DBS, etc. has to be borne by the individual patients.If my MDS advices me to go in for a DBS surgery, I just cannot afford to have one as it costs almost Rs.500,000 in India! So lets appreciate and understand each other on this forum. kind regards Gautam quote="teokimhoe"]The main purpose of my entries is to share my experience with sufferers of PD, and to get across the message that you alone can make a difference to your life by turning it around, as in my case, exercising correctly. Everybody has their own ways of expression, some confrontational and some more diplomatic. But the intention still remains the same, that is to share my experience with the hope that it may help others. If you think this is a laughing matter by throwing scorn around and making fun of others, so be it. As far as I am concerned, this matter is closed.[/quote]
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