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Social Security News:                

Early-Onset Alzheimer's disease will be included in the New Compassionate Allowance Conditions set by the Social Security

Administration according to Michael J. Astrue, Commissioner of Social Security.  Mr. Astrue said, " The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years. "There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions."

 

These 38 New Compassionate Allowance Conditions go into effect March 1, 2010:

 

  1.   Alstrom Syndrome

  2.  AmegakaryocyticThrombocytopenia

  3.  Ataxia Spinocerebellar

  4.  Ataxia Telangiectasia

  5.  Batten Disease

  6.  Bilateral Retinoblastoma

  7.  Cri du Chat Syndrome

  8.  Degos Disease

 9.  Early-Onset Alzheimer's Disease

10.  Edwards Syndrome

11.  Fibrodysplasia Ossificans Progressiva

12.  Fukuyama Congenital Muscular Dystrophy

13.  Glutaric Acidemia Type II

14.  Hemophagocytic Lymphohistiocystosis (HLH), Familial Type

15  Hurler Syndrome, Type IH

16  Hunter Syndrome, Type II

17.  Idiopathic Pulmonary Fibrosis

18.  Junctional Epdermolysis Bullosa, Lethal Type

19.  Late Infantile Neuronal Ceroid Lipofuscinoses

20.  Leigh's Disease

21.  Maple Syrup Urine Disease

22.  Merosin Deficient Congenital Muscular Dystrophy

23,  Mixed Dementia

24.  Mucosal Malignant Melanoma

25.  Neonatal Adrenoleukodystrophy

26.  Neuronal Ceroid Lipofuscinoses, Infantile Type

27.  Niemann-Pick Type C

28.  Patau Syndrome

29.  Primary Progressive Aphasia

30.  Progressive Multifocal Leukoencephalopathy

31.  Sanfilippo Syndrome

32.  Subacute Sclerosis Panencephalitis

33.  Tay Sachs Disease

34.  Thanatophoric Dysplasia, Type 1

35.  Ullrich Congenital Muscular Dystrophy

36.  Walker Warbug Syndrome

37. Wolman Disease

38.  Zellweger Syndrome

 

For more information:  www.socialsecurity.gov/compassionateallowances

 

 

 

"Caregiving can be a lonely, exhausting experience-- but it still can be a spiritually-enriching one.  Here are seven ways to help you get there according to Verna Benner Carson, PhD., Rev. Lois Knutson and Beth Witrogen:

Believe that caregiving is a calling.  Looking at caregiving as an appointed or God-given task makes it inherently meaningful from the get-go.   

Treat the mundane as the sacred.  Every task, from sorting paperwork to preparing food, can become meaningful if it's endowed with love and a passion to dignify another human being.

Maintain disciplines of reflection.  Keeping a journal of thoughts and feelings, for example, can help caregivers become more self-aware and make them more likely to manage emotions better from day to day.

Pray or meditate.  Contemplative practices provide time for much needed quiet, outlets for releasing stress and connections to a wider universe.

Care for the body.  Getting sufficient sleep, nutrition, exercise and recreation help create conditions in which caregiving can be more rewarding than draining.

Repeat helpful truths.  Saying the same affirming statements to oneself on  a regular basis provides positive structure to a day and keeps the mind from slipping into destructive negativity.

Remember that attitude is a choice.  Determine each day to view caregiving more as an opportunity for growth rather than an undeserved burden.  This sets the stage for joy and hope to color the experience."

 

Recent news on Alzheimer's Disease

Failed Drug Trials are Disappointing

Alzheimer's drug researchers served up a string of bad news at the International Conference on Alzheimer's Disease, presenting one failed trial after another.

None of these strategies tested--such as blocking amyloid, improving insulin sensitivity in the brain, or even doubling up on agents that improve synaptic signaling--was able to alter the steady rate of cognitive and functional decline in patients with mild to moderate Alzheimer's.

Instead of searching for the compound that will alter the so-far inevitable decline seen in Alzheimer's, the key will probably be preventing the disease from taking hold in the first place, Samuel Gandy, MD, PhD said.

bulletAlzheimer and Caregiver assistance proposals being considered in Congress:

HR 519 Elder Caregiver Support and Information Enhancement Act of 2009 provides for additional appropriations for FY 2010 - FY 2012 for the family caregiver support program.

HR 769  Social Security Caregiver Credit Act of 2009 if passed this legislation would amend the Social Security Act to give wage credits for up to 5 years of caring for a dependent  relative, no actual pay is given, but the credit could significantly increase a caregiver's Social Security benefit amount. 

HR 1192 Alzheimer's Family Assistance Act of 2009.  If enacted would amend the IRS Code to allow a tax credit for family caregivers of spouses and dependents who have long-term care needs as well as a tax deduction for long-term care insurance contracts.

S 697 Community Living Assistance Services and Supports Act (CLASS)  A bill to amend the Public Health Service Act to help individuals with functional impairments and their families pay for services and supports that they need to maximize their functionality and independence and have choices about community participation, education, and employment, and for other purposes. 

H.R.3286  To amend the Public Health Service Act to fund breakthroughs in Alzheimer's disease research while providing more help to caregivers and increasing public education about prevention.                        

                                                                                                                                                           
S.1492  A bill to amend the Public Health Service Act to fund breakthroughs in Alzheimer's disease research while providing more help to caregivers and increasing public education about prevention.

S.RES.185  A resolution supporting the goals and ideals of National Alzheimer's Disease Awareness Month and National Memory Screening Day, including the development of a national health policy on dementia screening and care.                                                                                                                                                            
H.R.2987  To amend the Public Health Service Act to ensure sufficient resources and increase efforts for research at the National Institutes of Health relating to Alzheimer's disease, to authorize an education and outreach program to promote public awareness and risk reduction with respect to Alzheimer's disease (with particular emphasis on education and outreach in Hispanic populations), and for other purposes.                                                                                                                                                                             
H.R.632   To encourage, enhance, and integrate Silver Alert plans throughout the United States, to authorize grants for the assistance of organizations to find missing adults, and for other purposes.
 

H.R.908   To amend the Violent Crime Control and Law Enforcement Act of 1994 to reauthorize the Missing Alzheimer's Disease Patient Alert Program.

S.1555   A bill to establish the Office of the National Alzheimer's Project.

  

bullet Georgetown University Medical Center researchers released study results indicating that a class of Alzheimer’s disease drugs appears to be effective in the treatment of traumatic brain injury.  These animal test results show that this class of drugs could possibly prevent the long-term damage from a serious brain injury.  Researchers hope to soon test these drugs with patients who have traumatic brain injury. For detailed information on this and other research check out the Georgetown University Medical Center website: http://memory.georgetown.edu
bullet For Information on all clinical trials go to:   http://www.clinicaltrials.gov/
bullet CPHPC is a new drug developed by Researchers at University College London's dementia research unit to benefit Alzheimer’s patients.   CPHPC was found to remove a protein, SAP (serum amyloid P component), and thought to be involved in the disease.  Findings that CPHPC removed the protein from the brain without any side effects are the result of a study of five patients over a three month period.  Researchers are encouraged and believe the results warrant more extensive clinical study of CPHPC.
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Last modified: 02/02/10