still chasing Linda's application for disability. met with a state vet benefits In spite of the two denials I found, he recommended apply given the fact ALS, Parkinson's diagnosis are now basis for approval.

The VA has received additional funding to extend their Home Based Primary Care Program to rural areas, like the south of Maryland. As Linda is already approved for VA Medical Benefits, they reached out. Showed up with a case manager and RN. Can continue with our local medical care support, they will monitor and provide assistance as necessary. Safety/ environment person to come next week for an assessment of the house and living conditions. Will provide and install handicapped stuffed like commodes, beds, hand rails, medical supplies (all ready delivered diapers). So, well worth pursuing - check with VA trained service officers at your local VFW, American Legion, DAV.

Wheels turn slow – have found out veterans are considered to be catastrophically disabled if they have a permanent severely disabling disorder, such as HD – which upgrades them in the pecking order for medical care to category 4, which opens up other avenues of support.

FYI: VHA Directive 2010-054 Catastrophically Disabled Veterans Evaluation, Enrollment, and Certain Co-Payment Exemptions
Federal Register, 38 CFR Prt 17, RIN 2900-A-021, Criteria for a Catastrophically Disabled Determination

Drafted the following for the people at John Hopkins to sign which will included in Linda's application. The ***'s parrots VA phraseology


"Linda C. Lothrop is a veteran with Huntington’s Disease, also known as Huntington’s Chorea. Clinical observations of her symptoms were confirmed with a diagnosis of Huntington’s Disease using (whatever the medical term for the test) at the John Hopkins Baltimore Huntington’s Disease Center on -----------.

Huntington’s Disease is a hereditary or familial* neurodegenerative disorder caused by an expansion of a repeating CAG triplet series in the huntingtin gene on chromosome 4, which results in a protein with an abnormally long polyglumtamine sequence and is toxic to brain cells. Atrophy is most marked in the corpus striatum of the basal ganglia, including the caudate and putamen, as in the case of Ms. Lothrop. There is currently no cure or treatment which can halt, slow or reverse the progression of the disease. Huntington’s Disease manifests as a triad of motor, cognitive and physchiatic symptoms which begin insidiously and progress in severity over time.
Since her diagnosis, Ms. Lothrop has been seen regularly by physicians and medical personnel at the HD Outpatient Clinic of the Baltimore HD Disease Center. The deterioration and impairment of her cogitative *, motor* and sensory* abilities has been pronounced*, progressive* and grave*, to the point where her HD is at an advanced stage. Speech disturbances such as slurring and inability to articulate, gait disturbances affect her balance and ability to walk without assistance and her tremors or chorea degrade her capacity to function normally.** Because of her inability to control her balance and gait, she has had several serious falls resulting in compressed factures of T11/12 and L1/2 and a sub derma hematoma on the right side of the brain.

Former U.S. Army Captain Lothrop is catastrophically disabled due to a permanent severely disabling disorder, Huntington's Disease, that totally compromises her ability to carry out the activities of daily living to the degree she requires personal assistance to leave home, bed and is dependent on others for her daily care, well being and supervision to avoid physical harm to herself or others. ***

I and members of the professional staff at The John Hopkins Baltimore Huntington’s Disease Center are available to consult with the Veterans Administration on matters pertaining to Huntington’s Disease and the impact of the insidious degeneration of the cognitive, emotional and physical abilities of veterans with Huntington’s Disease."

The VA has great respect for known medical research and hospital centers, such as John Hopkins. So, I shied away from referring to HDSA and COE's as they have little or no interface with the VA.


From the south of Maryland,

Fred Lothrop

Fred,

I don't think you will have any problem getting Linda determined Catastrophically Disabled. Actually, the Physician's Assistant that my husband sees at the VA filled out the ok to approve him and it was approved very rapidly, had notice within a month for sure and services were arranged very quickly for personal care and homemaker services.

Lizzieann