Alzheimer's Disease

Comment

Comment by sanu on January 27, 2010 at 4:07am

Mr. Joseph's comment is very shoking......I am very sorry to hear that the Alzheimer's Society coudn't support you and your mother. I dont know why it is so and what kind of support you asked from Kunnamkulam.
If i am right, the Kottayam Chapter is now able to provide nursing support (Domiciliary care), even though they are in developing stage. Since Kunnamkulam is very far from Kottayam( about 5 Hrs journey ) so they coudn't support your mother at your Home. But if you shift your mother to Dementia Care Centre at Kunnamkulam I am sure she will get good quality care. I am tellling you from my personal experience. I served for Alzheimers Society up to 2008. During my service period we developed the Dementia Care Centre at Kunnamkulam. It was the first one of that kind in India. It is the model Care centre in the country. This care home can provide round the clock care to the people with Alzheimer's disease and dementia. My relationship with Alzheimers Society started in the year 2003 through Kottaym Chapter of Alzheimers Society, b'se I am also from Kottayam. My father was suffering from dementia. I am sure that relationship helped me to improve quality care to my father. Later i decided to work with Alzheimer's Society.
I request all WEGO members to go through the website of Alzheimer's Society India(Alzheimer's and Related Disorders Society of India) http://alzheimer-india.org/

Comment by Jill on January 24, 2010 at 9:02pm

I have early onset Alzheimers. I'm 39 and have to carry around a notebook to see what the date is and what has happened so far . It's frustrating but at least I'm able to do that. I look forward to reading other peoples comments on Alzheimers and what they have found helpful.

Comment by Joseph on January 6, 2010 at 6:37am

I have seen Sanu's comment on Alzhimers in India. It is only a wrong information and interpratation. I am the son of an Alzhimer patient. I am suffering from the consequences of this disease for 9 years. I have researched a lot and could not find out any special hospital or clinic for such patients. Many people die in India due to this disease without getting any treatment and no one is aware of this phenomenon. Even Doctors are unable to identify this disease.
My mother who is an Alzhimer patient is unable to get any service from Alzhimers society even. She is using urine tube for 3 and half yeares and rice tube for 2 years. We used to go to a privet hospital to replace the urine tube during 3 weeks at my own cost. Rice tube also will be replaced after 3 months. "Here there is no provision for replacing the urine tubes for the bed ridden patients at home" this was the answer given by the Alzhimers association Kottayama Chapter. So also their is no such special clinic for the Alzhimers patients her. Again we contacted the Kunnamkulam Unit there answer also was disappointing. So we approched a palliative care unit and clinical team is comming and replacing the tubes regularly.
Mr. Sanu is requested to provide us with better quality clinical services at Kottayam. You are obliged to point out a care home for my Alzhimer mother at Kottayam. From where will be able to get the good quality service for my mother? In Kerala especially in Kottayam their are no memory clinics, care homes or supporting groups for the Alzhimer patients and their families? There are many day care centers her for LITTLE BABY's in our country. That is all. The doctors and common people do not know how to treat such Alzhimer patients even know.
Your opinion will only make a misunderstanding among the wego members. So I requist the WEGO members to search out the real conditions of Alzhimers patients in India.
Your comment is a misunderstanding one to WEGO. It is duty of Mr. Sanu to bring forth the reality of this conditions in India, In this field. I am also in contact with many other Alzhimer patients and their family in Kottayam and know that there is no one is caring or helping them and their suffering families.
Even though there is good publicity in paper, the Alzhimers society is not at all active.

Comment by paindfoot on January 5, 2010 at 5:21pm

I lost my mom in 2002 not to Alzheimers, but it was one of her diagnosis. It is one of the most terrifying diseases out there. I was her care giver for 7 years.We laughed, we cried and in the end, she didn't when she didn't know me anymore were strangers. I felt so lost, alone and terrified. I can relate to the slideshow. This could be me in the next 10 years.......

Comment by chili4you on January 5, 2010 at 12:21pm

It's a known fact that most of us will suffer from Alzheimer sooner or later. I truly believe that I may have an early onset of the disease with the memory loss going on. I'd like to become more educated with the disease and prevent any seriousness that may accompany this problem. Looking forward to an insightful group discussion.

Comment by sanu on October 1, 2009 at 4:47am

I saw a comment by Joseph and so adding some information. In India a good quality service is available for people with Alzheimer's and their family. The alzheimer's society in India is running many care homes, Special memory clinics, day care centres and support groups since the last fifteen years. I am associating with the Alzheimers society. The society had already completed many research studies and is still active.

Comment by Snowbird on September 13, 2009 at 10:04pm

The NYT Slideshow is absolutely terrifying. I don't think I can begin to imagine what it must be like, even though I worked briefly with Alzheimer's patients in the mid-90s.

Comment by Lisa on July 6, 2009 at 1:30pm

I wanted to share with all of you a NYT slideshow, similar to Amanda's, that depicts a artist's slow descent into dementia, as seen by his self-portrait paintings. As you flip through each piece, you can see the the toll this devastating disease has had on the artist's mind, and his work. I encourage everyone to check it out - it's nothing short of incredible.

Comment by amanda on March 24, 2009 at 12:55pm

I just wanted to share a beautiful website with everyone in the Alzheimer's community. This site is a photo journal by Phillip Toledano called "Days With My Father". The photography is stunning (so heart-warming and emotional!) and the journal is such a cool way to explore the journey with Alzheimer's between a father and a son. You can watch as their relationship changes while they endure the struggles of the disease and they still find the beauty in life. (It's a flash site so just click around to explore.)

Comment by Joseph on February 11, 2009 at 12:45am

I am a Indian and I have become a member just for knowing the above details. If it is wrong. I am sorry for it. Please delete my membership and profile.

In India Alzhimers patients have no special clinics. The society is not at all aware of this disease. As I have some experience from nursing my mother I know thoroughly the difficulties of such patients. So I wish to start a new project to help Alzhimers patients. I wish to get assistance and more infrmation from your organisation to start my project.
I have become a member to this group for receiving more knowledge about this disease. and further advice.
Thanking you
Joseph

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