Tuesday, 1 March 2011

Faithful Even In Adversity

Dear Caregivers,

A truly very inspiring aritcle about lesson in life from an elderly couple ........

Our special thanks to Ruby from our Penang Support Group for sharing the following with fellow caregivers and members.

I had the opportunity to visit an elderly couple recently whom I had not met for many years. The husband, whom I addressed as Uncle Sam, is an elderly gentleman in his eighties but he was physically healthy and fit. His wife is in her late seventies and was paralyzed and blind for many years. She lives confined to her room which she shares with her husband.

We made a prior telephone appointment to visit them and as expected Uncle Sam was eagerly waiting at the gate to greet me and my wife. His action was a lesson on punctuality which is rarely seen these days. I was surprised with the radiant smile on his face which reflected the feelings in his heart. I was in for greater surprise on meeting his wife in her room. Although she could not move out of her chair or see us, she was full of cheer on meeting us. She appeared pleasantly surprised at our presence. Their hospitality even in their times of difficulty was unbelievable and it touched us very much.

We talked for a long time about the past and they readily shared their experiences in their lives with us. They are staunch believers in God but they could not understand why He had to ‘punish’ them with such bitter experiences in their lives, ending up by being lonely and handicapped at this advanced age.

Although they could not understand why God has led them to the state they are in today but they contend that He knows what He is doing and that He is always right.

Uncle Sam does everything for his wife, feeding, bathing, attending to her calls of nature and above all keeping her company 24 hours a day without fail, with the aid of a maid who happens to be very wonderful person. He says he is so blessed to have such a caring maid and he is so worried as she will be leaving soon after being with them for seven years. According to the Uncle, his wife looks for him every now and then and he can hardly leave her alone to attend to the household chores.

His ‘job’ demands his full attention day after day throughout the year. There is no such thing as taking leave to relax and unwind after a hard day’s work like what we do. His greatest fear is what will happen to his handicapped wife if he is suddenly called to the Lord. That fear really makes him shiver with fright and occasionally breaks down and cries. If that happens not all the money and wealth that he may have is going to help her in this cruel world.

It made me reflect on the many foolish things we do in life to accumulate money and wealth much more than we really need. Most of these acts are driven by greed and selfishness in the process we compromise on our principles and lose our compassion for fellow men. We buy huge insurance policies for our spouse and children to make them comfortable when we leave them. But if we end up like these elderly couple, no number of such policies is going to give them the security and reassurance like our own physical presence.

In a world that is driven by greed and lust this elderly couple stand out as a shining example of love and faithfulness between a husband and wife. The husband never complained about having to take care of his disabled wife all by himself. Instead he is taking it in a stride as his sacred duty; he has done it for ten long years and is willing to continue doing so till death does them apart.

Meanwhile his wife despite being bedridden and blind for the past ten years, she is so cheerful and treasures every moment of her life with the man she loves. She is full of praise for her him saying that he never abandons her and never fails to be there when it matters most. She doesn’t curse and swear for the condition she is in but happily accepted it as a ‘blessing’ in disguise from God.

Uncle Sam then gave me his Ten principles for Peace of Mind which were derived from the various bitter experiences in his life of over 80 years.

These are:
1. Do Not Interfere In Others' Business Unless Asked.
2. Forgive And Forget
3. Do Not Crave For Recognition
4. Do Not Be Jealous
5. Change Yourself According To The Environment
6. Endure What Cannot Be Cured
7. Do Not Bite Off More Than You Can Chew
8. Meditate Regularly
9. Never Leave The Mind Vacant
10. Do Not Procrastinate And Never Regret

After spending about an hour with this fabulous elderly couple we left rather enlightened that there are much more to learn and endure in life. Life is not about making money and enjoying ourselves but to make others happy even if your own spouse.

The next day I was surprised to receive an E-mail from Uncle Sam which read, “Thank you very much for being a special part of our life” and he attached a beautiful and inspiring poem by the great Indian poet, Rabindranath Tagore entitled 'My Philosophy in Life' which I enclose below.

'MY Philosophy in Life'
Go not to the temple to put flowers at the feet of God.
First fill your own house with the fragrance of love.
Go not to the temple to light candles at the altar of God
First remove the darkness of sin from your heart
Do not go to the temple to bow down your head in prayer
First learn to bow in humility before your fellow men
Go not to the temple to pray on your bended knee
First bend down to lift someone who is down-trodden
Do not go to the temple to ask for forgiveness for your sins
First forgive from your heart those who have sinned against you
-Rabindranath Tagore-

I do not know whether I can ever emulate this elderly man with regards to his attitude towards his paralyzed and blind wife. I do not know whether I can emulate his wife by being so cheerful under the circumstances like she is in. What I have learnt from them is that I must try as that is what being a human is all about.
Dr.Chris Anthony

Sunday, 9 January 2011

DVDs SALE ON LECTURES/WORKSHOPS BY KEY SPEKAERS AT 13TH APRC OF ADI IN OCTOBER 2010

Dear All,

SALE OF DVDS AND PHOTOSTATED COPIES OF BOOKS/NOTES
ON SOME LECTURES AND WORKSHOPS BY KEY SPEAKERS AT
13TH APRC OF ALZHEIMER'S DISEASE INTERNATIONAL IN OCTOBER 2010

Wishing all of you a Happy & Blessed New Year!

We are pleased to make the following announcement:

As there was some interest even before the conference, we have obtained written permission from a few key speakers to video their talks which we now offer for sale at a nominal price of RM10.00 per DVD. The hard covered Pos Ekspres envelope costs RM3.50 to all major towns in Malaysia and the five DVDs available now are:

1. Keynote Address 1: “The Pre-Mild Cognitive Impairment, Subjective Cognitive
Impairment Stage of Eventual Alzheimer’s Disease: An Opportunity for Treatment
more than Twenty Years before Dementia becomes Evident” by Prof Barry Reisberg
of NY University (USA). Good & clear visual and audio.

2. Plenary 3: “Retrogenesis – Life’s Mirror: New Ways of Understanding & Treating
Alzheimer’s Disease” by Prof Barry Reisberg. Good & clear visual and audio.

3. “Workshop on Cognitive Stimulation” by Amy Streater, a doctoral student
researcher of UCL (London) on a research project conducted under Prof Martin
Orrell of UCL.

4. “Caregivers Training and Tips for Survival” by Anne Deck & Sheila Haywood who
each have over a decade of experience in Dementia care in Western Australia. This
is a polished workshop with well rounded audience participation.

5. Pre-congress Visit to ADFM Daycare Centre PJ, Opening Ceremony & Gala Dinner.

We are also making available the following photostated copies of books/notes relevant to
the above:

1. The Pre-Mild Cognitive Impairment, Subjective Cognitive Impairment Stage of
Eventual Alzheimer’s Disease by Prof Barry Reisberg et al. (RM3.00 each)

2. Retrogenesis by Prof Barry Reisberg et al. (RM3.00 each)

3. An evidence-based group programme to offer Cognitive Stimulation Therapy (CST)
to people with Dementia – The Manual for group leaders. (RM8.00 each bound with
plastic cover)

4. Family and Carers’ Information Booklet from Alzheimer’s Australia WA Ltd.
(RM4.00 each)

Buyers within the Klang Valley may contact Ms Janet Low @ Tel: 03-7956 2008 to book and
arrange to pay and collect from ADFM Head Office, Rumah Alzheimer’s, No.6, Lorong 11/
8E, 46200 Petaling Jaya, Selangor.

For buyers outside of the Klang Valley we shall have to send by post and the DVDs may be
put into a hard cover Pos Ekspres envelope which cost RM3.50 whereas the photostated
books and notes will have to be charged postage cost @ RM1.00 per copy

Foreign buyers will pay in USD plus postage or courier as requested.

PLEASE PLACE YOUR ORDER EARLY WITH JANET LOW OF ADFM SECRETARIAT AT:

Email : adfmsec@streamyx .com
Telephone contact : +603 - 7956 2008
Fax: +603-7960 8482
Address : ADFM Head Office, Rumah Alzheimer’s, No.6, Lorong 11/
8E, 46200 Petaling Jaya, Selangor, Malaysia


FROM: ADFM SECRETARIAT
9 JANUARY 2011

Sunday, 19 September 2010

(SAT)25SEPT10 2:00PM TALK "PHARMACOLOGICAL TREATMENT FOR DEMENTIA” BY DR LIM POH HIN FROM UPM

Dear Members and the Public,

ADFM KL-PJ AD Caregivers Support Group Committee is having its monthly gathering and a talk by Dr Lim Poh Hin from UPM on:

Topic : “PHARMACOLOGICAL TREATMENT FOR DEMENTIA”

Day/Date : Saturday, 25 September 2010
Time : 2:00PM
Venue : ADFM Daycare Center at No. 6, Lorong 11/8E, Section 11 46200 Petaling Jaya

REGISTRATION

Prior registration is required, on first-come first-served basis. Kindly confirm your attendance to:
1. Email : jenny@adfm.org.my, OR
2. Email : adfmsec@streamyx.com, OR
3. ADFM Secretariat at Tel: 603 – 7956 2008 / 7958 3008

PROGRAM

2:00pm–2:30pm : Registration
2:30pm–3:15pm : “Pharmacological Treatment for Dementia” by Dr Lim Poh Hin
3:15pm-3:45pm : Q&A
3:45pm-4:00pm : Caregivers Sharing Session
4:00pm : Refreshments.

SYNOPSIS

Dr Lim will speak on the pharmacological interventions available for slowing the progression of Alzheimer’s Disease and new advances in the work, including:
- Current understanding of Physiological Mechanism in Dementia
- Overview of Medications Used for Dementia
- Neurobehavioral Symptom Control
- Complications & Side Effects
- Brief Look at Complementary/Alternative Medicine Therapeutic Options

SPEAKER’S PROFILE

Dr Lim Poh Hin holds a Bachelor of Science:
- In Applied Biological Sciences 1989 (Massachusetts Institute of Technology, Massachusetts, USA)
- Doctor of Medicine 1995 (Columbia University, New York, USA)
- Completed Neurology Residency 1999 and Neuro Rehabilitation Clinical Fellowship 2001 (Washington University School of Medicine, Saint Louis, Missouri, USA)
- Diplomate of the American Board of Psychiatry & Neurology (Adult Neurology) 2003 (USA)
- Listed in the American Board of Medical Specialties since 2003
- Lecturer in Department of Medicine, Universiti Putra Malaysia since 2003 & current Head of the Department of Medicine, Faculty of Medicine and Health Sciences, UPM.


From: KL-PJ AD Caregivers Support Group Committee

Saturday, 19 June 2010

26 JUNE 2010 (SATURDAY) ADFM Countryside Outing Day Trip for Durian & Fruits Party at Telok Panglima Garang, Kuala Langat District, Selangor

Dear Caregivers and Members,

ADFM is organizing a countryside outing day trip for the Durian & Fruits Party at the proposed Alzheimer’s Home Care Centre at Kuala Langat on Saturday, 26 June 2010. We will be arriving there around 10:30am and leaving for Kuala Lumpur at 2:00pm.

Details:

DURIAN & FRUITS PARTY

Day/Date : Saturday, 26 June 2010

Venue : Proposed Alzheimer’s Home Care Centre, Telok Panglima Garang, Kuala Langat

Departure Time : 9:30AM SHARP

Departure Venue : We have chartered two aircond buses

(1) 1 bus leaving ADFM PJ Day Care Centre at No. 6, Lorong 11/8E,

Section 11, 46200 Petaling Jaya.

(2) 1 bus leaving ADFM Taman Seputeh Day Care Centre at 9A, Lorong Bukit Raja, Taman Seputeh, 58000 Kuala Lumpur.

Registration : You are requested to register early.

Email to adfmsec@streamyx.com, providing the following details:

(1) Name/s

(2) I/C No

(3) Home Address

(4) Telephone Contacts – Home or Mobile

OR call ADFM at Tel: 603-7956 2008 / 7958 3008

Proposed Alzaheimer’s Home Care Centre at Telok Panglima Garang, Kuala Langat

ADFM have been offered a 5+5 year lease for a huge 2-storey bungalow on a 1 acre manicured and walled-in garden for RM1.00 per annum but we pay for its maintenance.

As the location is roughly half way between Klang and Banting in a rural setting, we do not think it is practical to offer Daycare and are therefore considering offering Live-in Home Care for clients with Dementia. It presently has 3-4 old folks living there (not with Dementia).

To let people know of this new facility which will come on stream in a few months, probably after the 13th APRC in October, ADFM are inviting:

(1) Doctor friends and their families

(2) Support Group members

(3) Rotary Club of Shah Alam and possibly Klang Rotary Club members

to visit the place and enjoy the fruits of Kuala Langat District. Those who cannot live on fruits alone can have a packet of nasi lemak.

See all of you soon !!!

ADFM – Alzheimer’s Disease Foundation Malaysia

Wednesday, 7 April 2010

Saturday, 17 April 2010 - On Day Training Course on "One Day Training Course on "Dementia Care - Quality of Life Approach"

Dear Caregivers/Members,

ADFM is organizing a One Day Training Course on "Dementia Care - Quality of Life Approach" on Saturday, 17 April 2010.

Details:
Title: Dementia Care – “Quality of Life Approach”
Date: Saturday, 17 April 2010
Time: 9:00am to 4:30pm
Venue: Rumah Alzheimer’s at No. 6, Lorong 11/8E, Petaling Jaya


PROGRAMME
09.00am–09.30am : Arrival of Participants & Registration
09.30am–09.35am : Welcome Address by Datuk Dr Yim Khai Kee, Chairman, Executive Committee, ADFM
09.35am-10.15am : Challenges of Dementia by Mr Wille Kwa, Retired Nursing Manager, UK
10.15am-10.45am : Normal Ageing

10.45am–11.00am : Coffee Break

11.00am–11.30am : Handling of Elderly by Ms Tracy Chan, B. App Sc. (Physiotherapy), University of Sydney
11.30am–12.15pm : Dementia Care Based on “Quality of Life Approach”
12.15pm–12.30pm : Q & A

12.30 pm–01.30pm : Lunch Break

01.30pm–02.15pm : Brain and Behaviour Video + Commentaries
02.15pm–03.00pm : Behaviour Management
03.00pm–03.45pm : Activity Principles for Dementia Care
03.45pm–04.30pm : Quality Checklist on Dementia Care Services
04.30pm–04.45pm : Q & A
04.45pm : Tea and Adjourn


Trainer: Mr Willie Kwa resides in UK and is a member of the Alzheimer’s Disease Foundation Malaysia Executive Committee. He is also a Retired Mental Health Practitioner and a member of the West Norfolk Branch Alzheimer’s Society, UK.

Synopsis:
People with Dementia, despite their disabilities and changes due to the illness are able to experience pleasure and satisfaction. The disease does not remove a person's ability to appreciate, respond to and experience feelings such as pain, anger, fear, joy, love or sadness. Quality of life approach to care is one way of ensuring these abilities of a person are sustained throughout the course of the illness and that of the caregiver.

Alzheimer’s Disease International (ADI) has identified raising awareness of dementia among the general population and among health workers and all care givers as a global priority, therefore, it is for us who are privileged to have the knowledge to ensure dementia awareness is heightened where and when possible.

Registration:
Those interested are requested to register and pay early due to limited space. Attendance will be registered with a donation of RM20/- per participant.

Please contact Janet/Kwan/Sim at Tel: 603 - 7956 2008 for registration and payment.

Closing Date Friday, 9 April 2010.

Thursday, 25 March 2010

Training Course : Dementia Care-Quality of Life Approach

Dear Caregivers/Members,

ADFM is organizing a one day training course on "Dementia Care-Quality of Life Approach" on 17 April 2010.

Details:

Title: Dementia Care – “Quality of Life Approach”
Date: Saturday, 17 April 2010
Time: 9:00am to 4:30pm
Venue: Rumah Alzheimer’s at No. 6, Lorong 11/8E, Petaling Jaya

Trainer: Mr Willie Kwa resides in UK and is a member of the Alzheimer’s Disease Foundation Malaysia Executive Committee. He is also a Retired Mental Health Practitioner and a member of the West Norfolk Branch Alzheimer’s Society, UK.

Synopsis:
People with Dementia, despite their disabilities and changes due to the illness are able to experience pleasure and satisfaction. The disease does not remove a person's ability to appreciate, respond to and experience feelings such as pain, anger, fear, joy, love or sadness. Quality of life approach to care is one way of ensuring these abilities of a person are sustained throughout the course of the illness and that of the caregiver.

Alzheimer’s Disease International (ADI) has identified raising awareness of dementia among the general population and among health workers and all care givers as a global priority, therefore, it is for us who are privileged to have the knowledge to ensure dementia awareness is heightened where and when possible.

PROGRAMME
09.00am–09.30am : Arrival of Participants & Registration
09.30am–09.35am : Welcome Address by Datuk Dr Yim Khai Kee, Chairman, Executive Committee, ADFM
09.35am-10.15am : Challenges of Dementia by Mr Wille Kwa, Retired Nursing Manager, UK
10.15am-10.45am : Normal Ageing

10.45am–11.00am : Coffee Break

11.00am–11.30am : Handling of Elderly by Ms Tracy Chan, B. App Sc. (Physiotherapy), U of Sydney
11.30am–12.15pm : Dementia Care Based on “Quality of Life Approach”
12.15pm–12.30pm : Q & A

12.30 pm–01.30pm : Lunch Break

01.30pm–02.15pm : Brain and Behaviour Video + Commentaries
02.15pm–03.00pm : Behaviour Management
03.00pm–03.45pm : Activity Principles for Dementia Care
03.45pm–04.30pm : Quality Checklist on Dementia Care Services
04.30pm–04.45pm : Q & A
04.45pm : Tea and Adjourn

Those interested are requested to register and pay early due to limited space. Attendance will be registered with a donation of RM20/- per participant. Please contact Janet/Kwan/Sim at Tel: 603 7956 2008 or Email: adfmsec@streamyx.com for registration and payment.

Closing Date Friday, 9 April 2010.

Saturday, 2 January 2010

DOES LIGHT THERAPY HELP ALZHEIMER'S PATIENTS SLEEP?

Many people with Alzheimer's have trouble sleeping, which can leave them exhausted during the day. Fatigue takes a toll on both patients and their caregivers. Indeed, irregular sleeping is a major reason why families move relatives with Alzheimer's into long-term care. Light therapy is a promising treatment under investigation for people with Alzheimer’s who struggle with sleep.

Alzheimer's patients who have trouble sleeping should first be evaluated for underlying sleep disorders and medical conditions that cause sleep trouble. Also, stopping medications that affect sleep or switching to more tolerable drugs may help.

No studies have found that conventional sleep aids, like Ambien (zolpidem) and Sonata (zaleplon), or sedative antidepressant medications like trazodone (Desyrel) effectively treat disturbed sleep in Alzheimer's patients. And supplements that boost levels of melatonin (a hormone that makes people feel tired) have limited effect, perhaps because Alzheimer's patients have fewer melatonin receptors in the brain than people without dementia.

Light therapy - regular exposure to sunlight or special bright lamps that mimic natural light - is another option. Exposure to bright light signals to the brain that it is daytime and helps set the body's circadian rhythms -- regular mental and biological changes that occur over a 24-hour cycle and regulate important functions, like preparing the body for sleep at night.

How well does light therapy work for Alzheimer’s patients? In a three-week study from the University of North Carolina at Chapel Hill, 66 adults with dementia living in long-term care facilities were exposed for varying amounts of time to bright ceiling lights installed in common areas.

Compared with participants who did not spend time under the lights, those who were exposed to light therapy for two and a half hours in the morning slept 16 minutes longer; those who were exposed for about eight and a half hours off and on throughout the day slept 14 minutes longer. The morning group was also able to fall asleep 29 minutes earlier, which is important since Alzheimer's patients often can't fall asleep until late at night.

But not all studies have produced positive results, and there are questions about the appropriate dosage. The amount of light prescribed for other conditions may not be sufficient for older patients with Alzheimer's; eyes transmit less light with age, and visual problems are particularly common in patients with Alzheimer's disease.

While researchers have yet to determine the ultimate benefits of light therapy or how much is needed to have an effect, "It's still reasonable to encourage people with Alzheimer's to stay in well-lit areas during the day," says Peter Rabins, M. D., Director of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins.

This may be more practical than purchasing specialized equipment, he notes. "The light-therapy boxes used by people with disorders like depression require sitting still in front of a bright lamp, and this can be a challenge for those with Alzheimer's." Spending time outside in the morning may be a convenient way to produce similar effects.

More Tips for Caregivers. The Alzheimer's Association offers these tips for better sleep:

  • Maintain regular meal times and sleep schedules.
  • Discourage alcohol, caffeine, and nicotine use.
  • Encourage daily exercise (but no later than 4 hours before bedtime)
  • Don't give Alzheimer's drugs before bedtime.
  • Discourage watching TV or staying in bed during wakeful periods.

(Source: John Hopkins Health Alerts, 14 December 2009)

Wednesday, 7 October 2009

NOV 14TH AND 15TH : ROYAL CHARITY CONCERT, UNFORGETTABLE "KONSERT AMAL DIRAJA" ORGANIZED BY ADFM

Dear Members and the Public,

Alzheimer's Disease Foundation Malaysia (ADFM) is a non-profit organization set up to promote awareness of Alzheimer's Disease and other forms of dementia, while supporting Alzheimer's patients and their caregivers at dedicated care centers. From a small community project in 1996, ADFM's role and commitment have grown over the years as it continuously champion the needs of the patients and caregivers in Malaysia, giving them a voice and ensuring that they will not be forgotten.

The Alzheimer's Disease Foundation Malaysia (ADFM) is organizing a charity concert, Unforgettable "KONSERT AMAL DIRAJA" at the Plenary Hall of Kuala Lumpur Convention Centre (KLCC) on November 14th and 15th, 2009 in conjunction with the 64th Birthday of His Royal Highness the Sultan of Selangor, DYMM Sultan Sharafuddin Idris Shah Al Haj Ibni Almarhum Sultan Salahuddin Abdul Aziz Shah Al-Haj as well as in aiding the non-profit organization's fund. The Royal Charity Gala Concert on November 15, 2009 will be graced by the Sultan of Selangor.

The charity concert, aptly named “Unforgettable“ as it signifies the struggle of the Alzheimers patients and their caregivers, is set to give the audience a night to remember as they walk down the musical memory lane of light classics, popular favourites and sheer symphonic magic.

A NIGHT TO REMEMBER - UNFORGETTABLE "KONSERT AMAL DIRAJA"

COME THIS NOVEMBER 14TH AND 15TH, Malaysian-born, New York-based Conductor, Eugene Pook leads 66 premier international and local musicians in a programme of sheer symphonic magic with light classical pieces and highlights from the exhilarating worlds of stage, silver screen, and beyond! Guest soloists include award winners, virtuoso violinist Jessica Lee and Malaysian artist Sean Ghazi in a special performance to enthral you in an Unforgettable Night.

DETAILS:
(1) TIME / DATES:
8:30pm - November 14th, Charity Concert Night
8:30pm - November 15th, Royal Charity Gala Night

(2) VENUE: Plenary Hall, Kuala Lumpur Convention Centre (KLCC)

(3) TICKET PRICE:
RM383, RM283, RM183, RM83 ( Saturday - Charity Concert Night)
RM500, RM350, RM200, RM100 (Sunday - Royal Charity Gala Night)

(4) EARLY BIRD DISCOUNT 10%
There is an early bird discount of 10% for the first two weeks, starting from 30/09/2009 to 15/10/2009.

(5) VISA DISCOUNT 20% (Valid from 30/09/2009 Till 15/10/2009)
20% rebate on normal ticket price to Premium VISA Card Members (VISA Infinite & VISA Platinum).
4 tickets per Visa Infinite and Visa Platinum Cardholder.
Purchase MUST be made through Axcess-Visa dedicated HOTLINE 03-7954 5922 or any authorized Axcess-Visa Outlets.

All tickets are available at all Axcess following Outlets, Hotline and Internet:
> Axcess Office
> 1-Utama Shopping Complex
> Stadium Putra, Bukit Jalil
> Rock Corner Mid Valley
> Tower Records Lot 10
> Parkson Sunway Pyramid
> Rock Corner The Curve
> Rock Corner KLCC
> Alamanda Putrajaya Shopping Centre
> UC Travel, University Malaya

(5) TICKET ENQUIRIES & PURCHASES:

CALL AXCESS HOTLINE: 603 - 7711 5000

ONLINE: www.axcess.com.my OR CLICK here:
http://axcess.com.my/s_KonsertAmalDiraja09.asp?id=7907232852729371778249823783458571894156

OR VIA ONLINE LINK SETUP AT ADFM Website: www.adfm.org.my

(6) EVENT ENQUIRIES:
Call ADFM at (603) 7956 2008 / 7958 3008 or Email: adfmsec@streamyx.com

Log on to www.adfm.org.my for more information.

To raise awareness and funds for Alzheimer care, support and research, we call on the support of all members and the public to join us in making this charity concert a success.

Your support is much appreciated to disseminate this information to family members, friends, business associates, colleagues and the public to join us for a good cause.


From: The National Alzheimer's Caregivers Online Network (NACON).

Tuesday, 22 September 2009

THE GIRL, 13, WHO'S HAD DEMENTIA SINCE SHE WAS NINE


A 13-year-old girl is suffering from Alzheimer's-like dementia after developing an extremely rare form of the disorder.

Isobel Jeffery displays the same symptoms as some victims in their 70s, and can no longer feed or dress herself or walk or talk properly. She becomes easily confused and suffers memory loss, nightmares and hallucinations. Isobel was diagnosed with early onset dementia aged nine after she began to slur her words, lose the ability to swallow and became unsteady on her feet.

She now needs 24-hour care and will never develop the basic day-to-day skills to look after herself.


Child dementia is extremely rare and affects about one in 12million - about 500 worldwide.
It is sometimes treatable, but although there are 100 different types of dementia, including Alzheimer's, doctors say Isobel's condition has not responded to any medication.

Her mother and full-time carer, Nicola, 39, says her daughter has lost understanding of the world around her as her mind has gradually shut down. But she described her as a 'rare cookie' who retains a sense of humor and goes about her life with enthusiasm.

The mother of two from Exeter said: "When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk."

"Now it is a relentless loss of skills and mobility. We've been told that she will slowly deteriorate. She has undergone extensive tests but the outcome is always the same."

'The prognosis is she will get gradually worse." She added: 'The cruel thing about dementia is that she is semi-aware of the fact that she is losing her skills."

"Despite all this, she is one of the most vibrant people I have ever known, with a wicked sense of humour and enthusiasm about life."

After her diagnosis Isobel gradually lost the ability to concentrate and her conversation became 'fixed' and 'rigid'.

Doctors have said that the condition will eventually rob her of her ability to walk, speak and even communicate with her family at all.

She has been given just ten to 15 years to live - meaning she could be dead before her 30th birthday.

Dementia is a degenerative and progressive disease which can affect all areas of mental and physical functions, not just memory. Diagnosis before the age of 65 is considered as early onset. For Isobel it has meant learning difficulties, impaired memory and sensory processing problems.

Isobel lives with her mother, father Keven, 39, a nuclear safety engineer, and sister, Katie, eight.

Mrs Jeffery said: 'Two years ago we took the painful decision to have an operation to enable her to be tube fed directly into her stomach because she was no longer able to swallow."

"We don't know why it is happening. Izzie effectively has Alzheimer's although she is only 13. But she is a rare cookie and really has made every attempt to live her life to the full."

Terry Roberts, of the Alzheimer's Society, said: 'This is a very sad state of affairs which re-emphasizes how important support is for the young person and the carers."

Mrs Jeffery is taking part in a four-day, 370-mile bike ride from London to Paris to raise awareness of her daughter's condition and funds for research. It begins on September 16.

To sponsor her, visit www.justgiving.com/nicolajeffery2.

(Source: The Daily Mail, September 12, 2009 - http://www.dailymail.co.uk/health/article-1212904/The-girl-13-whos-dementia-nine.html?printingPage=true)The mother of two from Exeter said: 'When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk."
"Now it is a relentless loss of skills and mobility.

(Join The Malaysia National Alzheimer's Caregivers Online Network - NACON )

Monday, 21 September 2009

DRUG FOUND TO CREATE NEW CONNECTIONS IN BRAIN, RESTORING AND IMPROVING MEMORY

Scientists at the Blanchette Rockefeller Neurosciences Institute (BRNI) have discovered that a cancer drug – Bryostatin – enhances the formation of new connections in rat brains during memory storage. This drug could potentially increase normal memory capacity in humans as well as repair and restore memory lost from Alzheimer’s disease, stroke and head trauma.

In an article in the December 4 issue of the Proceedings of the National Academy of Sciences (PNAS), BRNI Scientific Director Daniel Alkon, M.D., and Jarin Hongpaisan, Ph.D., describe how the cancer drug Bryostatin stimulates the production of connections between neurons in the same structural way that memory storage does naturally. Bryostatin essentially rewires the brain.

"There have been no effective drugs to promote brain repair,” Dr. Alkon said. “Bryostatin and other BRNI drugs in this class could introduce a whole new era for brain repair. At the same time, we are now closer to understanding what controls the growth of synaptic connections in the adult brain."

The BRNI research shows that a healthy brain normally undergoes some ‘rewiring’ when it stores memories. Bryostatin enhances this rewiring in normal healthy brains and also creates new connections in brains that have been ravaged by Alzheimer’s disease, stroke or head trauma.

Alkon and Hongpaisan used high-powered electron microscopes to directly visualize these synaptic connections between neurons. They also used molecular markers to label these connections to confirm the synaptogenesis induced by memory and Bryostatin.

“Diseases like Alzheimer’s actually destroy synapses in the human brain. There is still no recognized cure,” said Dr. Alkon. “In our animal studies with Bryostatin, damaged brains repaired synaptic connections of cells that were ruined from disease, giving the brain more capacity for memory. If this result is applicable to humans, this could be life-changing for Alzheimer’s patients.”

In previous BRNI studies, Bryostatin was found to markedly increase survival of mice with human Alzheimer's genes, decrease the production of the toxic Alzheimer's protein called A Beta, and increase the production of the healthy proteins from human cells.

Bryostatin also shows the ability to accelerate the production of synapses when paired with learning exercises. According to Dr. Alkon, this could eventually lead to new treatment therapies for children with compromised memory activity.

In 2004, BRNI received patent protection for the use of Bryostatin - originally developed as a cancer drug - to treat Alzheimer's disease. BRNI is preparing now for the first clinical trials of Bryostatin for the treatment of neurological disorders. Clinical trials wi
ll test whether Bryostatin’s promising preclinical results generalize to humans.

Source: http://www.alzheimersweekly.com/Research/drug-found-to-create-new-connections-in-brain-restoring-and-improving-memory-a226.html


(From The Malaysia National Alzheimer's Caregivers Online Network - NACON)