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Thursday, May 12, 2016

Better Then The Med's I Take

Better then the Med's I Take

Like the Title of his Blog, "the Peers Life" Please welcome a fellow Peer, a reader and new friend whom met while reading my Op-Ed re-print in the National Alliance on Mental Illness this past December 1st, 2015, Worlds AIDS Day.

Like I say when I receive emails from readers, "Better than the Medications I take," is why I'm a Consumer Advocate for mental health, HIV and substance abuse, raising awareness and eliminate the STIGMA of all three.
A tease from his Blog. "I’m an American/Australian man who has relocated from Lismore NSW Australia, a regional city centre to Tucson Arizona. I’m a recently Certified Peer Support Specialist. I volunteer at NAMI Southern Arizona providing NAMI program and information regarding mental health held at various resource fairs throughout Tucson. Prior to living in Tucson I left a wonderful mob of people called Grower’s. With the help of the GROW program I changed my life and I haven’t looked back yet. Thanks mates!"

Please welcome James Chapman, "The Peers Life"

Tuesday, May 10, 2016

Living, Coping, Aging with HIV among People over 50

Living, Coping, Aging with HIV among People over 50
by James Chapman, Southern Arizona Certified Peer Specialist

How aging with HIV affects our brain function, our social support
networks and mental health

For people living over 50 with HIV, whether you are a long-term
survivor or recently diagnosed, we are the first group of people who
live with HIV/AIDS and many co-morbidities as we age which are being
studied and given considerate thought in accessing what our needs are
both physically, mentally and socially.  It’s ongoing.  It would be
helpful to them if we give them the opportunity to understand us
better.  The more we can share the more they have to work with.
Living with HIV in later life presents the opportunity for doctors,
psychiatrists, psychologists, neurologists and social workers to
better understand how they can best serve us.  We are the first
amongst people living with HIV/AIDS to be studied.  We can experience
changes in our mental health, our neurocognitive abilities can change
and our fine motor skills could become affected.

HAND or HIV AIDS Neurocognitive Disorder has 3 disorders with
different degrees of impairment. We could have trouble with attention,
memory, language, problem solving, decision making.  We will
experience none, some or many of the known symptoms which can and does
affect our lives, emotional and spiritual well-being, our social
support network, and family.  It can come all at once or slowly.
There is no set way for HAND to occur.

Symptoms of HAND can include confusion, forgetfulness, headaches,
changes in the way you behave, problems with cognition or movement,
pain due to nerve damage, and a gradual weakening and loss of feeling
in the arms and legs.  The only way to be sure is to seek an
experienced neurologist who can eliminate other possibilities or
causes.  They may conduct neurological exams, perform brain MRI scan,
possibly a lumbar puncture to analyze the cerebrospinal fluid (CSF).
Depending upon the results a change may be needed in the type of HIV
drugs prescribed.  Please speak/consult with your doctor about changes
to drug treatments.

There are other areas of our lives that it can impact.  It can affect
our ability to seek enjoyment being with people and lead us to isolate
out of the stigma and discrimination we may face, how well we continue
to stick to drug treatments and following our doctor’s advice.   Our
family and community support is important to maintaining physical and
emotional wellness and connection to others.  Finding people who can
see past what we are experiencing and to focus on what our needs are.
Having a good spiritual or religious belief(s) has a known positive
affect on our well-being.  Learning mindfulness and applying it into
your daily life as a way to focus on activities we are able to do, not
focusing on what we cannot.

So you think you may be experiencing HAND or is it just depression?
You may or may not be aware of it happening.  This is where your
doctor may wish for you to be assessed through neuropsych testing.  It
will provide the psychologist with a detailed assessment of your brain
function/capacity.  It can be followed up with time if your symptoms
are remaining or have progressed.  It’s an important tool to have in
allowing people who treat us to have a bigger picture of where we are
at.  Because we are entering into uncharted waters there are no easy
answers or that they have figured out how to treat us.  All of us can
experience similar symptoms with different needs.  No two people are

I would like to share with you my personal experience as a way to help
you understand this important topic that is affecting people living
with HIV/AIDS over 50.  I have lived with HIV/AIDS for 33 years this
past March.  In early 2007 I was diagnosed with AIDS (HIV

In late 2006 I was working in a high stress job as a receptionist at a
company who processes insurance claims.  I talked on the phone every
day, initiated new claims for the assessors to inspect damage claims.
I was the beginning contact point, follow-up progress of claims, and
filing of claims once completed.  6 months into my job I began to
notice small things.  Dismissible things like not remembering how to
spell someone’s name while on the phone with a customer.  I would lose
track of my thoughts and keeping all of daily tasks in order.  I live
with a spinal injury and my left foot began to drag on the floor while
I was walking across the floor.  Over time I was finding it difficult
to talk on the phone either losing track of what I was talking about
or who I was talking to.  My speech became noticeable to other people.
They could see that I was changing from the person they recognized but
not being able to put a finger on what it might be.  My employer was
unaware of HIV status.  I hadn’t disclosed my status.
I stopped working abruptly.  I wasn’t able to function.  I was finding
everything too hard.  I didn’t understand what was happening to me.  I
knew I lived with depression and this was way different.  I felt like
a shell of the man I was.  No self-esteem, a good support system and
medical team.

After consulting with neurosurgeons for possible neurological problems
due to my spinal surgery, I was assessed by Professor Bruce Brew
Director of Neurology St. Vincent’s Hospital in Sydney Australia.
Based on his assessment I was advised that I had HIV Brain disease
(HIV Encephalopathy) and spinal cord involvement.  He gave my HIV Dr.
a list of new drug treatment options and offered this as a way to
begin my treatment.  I was given all of the known HIV medications at
that time (2007) that would stop the virus from crossing the blood
brain barrier.

I began to see a psychologist who gave me ways in coping and learning
new strategies to deal with such a radical change in my life.  I
learned mindfulness.  I practiced it every day.   My ability to think
had stopped.  I was losing the ability to say what I was thinking.  It
would get on the tip of my tongue and then disappear.  I spoke with a
slur/slowness.   I began to use a walking frame.  My cerebellum had
been affected.  It’s the part of the brain that affects walking,
talking, thinking and speaking had been affected.
My whole world changed overnight.

I currently live with peripheral neuropathy of my hands and feet with
an unknown cause.  Possibly HIV, drug medications, or long term nerve
damage.  I manage through diet, exercise, mindfulness and being gentle
on myself.  I had a counselor available to talk about what I was going
through.  It helped me overcome what I was living with.  Emotion can
both lift us up and also create for tense feelings which can increase
pain, increase Blood Pressure and Depression.

One of the reason’s we are on disability is so that we have the time
and ability to educate ourselves on our disability(s).  Learn to take
care of us so we can begin to lead a self-directed life.  I have spent
many years learning how the body functions because of my disabilities
(physical, mental).  When we know what is happening to us it can help
reduce our fears of the unknown.  Reducing our stress and anxiety
about the unknown.  Take one step at a time.

It was hard living with HIV Encephalopathy and thought I was going to
die.  My doctors hadn’t seen this before and were at a loss of what
could be done.  I took my meds and did the best I could each day
trying not to fall apart emotionally.  My relationship with my partner
began to change.  Our communication was difficult.  I was reliant upon
him to take me to doctors’ appointments, picking up my meds from the
pharmacy, nearly for everything.  I was given a visit by an
occupational therapist to review what could improve my daily routine
in my home making changes that were necessary.  I learned a whole new
way to live by dealing with the physical problems I was experiencing.
Allowing for change is hard and so worth it for me.  It brought me new
insights and possibilities.

When we come face to face with death we find out what we are made of.
In time I was able to change my HIV drug treatment.  I had a new HIV
doctor who had a different approach to how I was being treated and
with a reduction in the number of HIV meds, I improved.  My new HIV
drug treatment consists of 2 pills taken once a day.  It was a huge
psychological change from taking my meds 2x day every 12 hours for
many years.  It was a godsend and welcomed.  How something so small
could create a big impact just by switching my HIV meds.  I’m glad I
made that change.

As I get older living with HIV/AIDS I am well informed about my
disease(s) and how to stay well by being proactive about my life.  I
am concerned primarily about the normal old age problems.  Each day I
take steps that will help me further down the road to stay well.  Part
of going through horrific medical experiences for me is to learn from
them.  By taking steps in making good food choices & plenty of water
each day, taking my medications each day as directed, going for walks
staying active, having family in my life, connecting with people by
volunteering and being a part of the community, whilst maintaining a
good working relationship with my medical team gives me peace of mind
that I am doing what I need to do to stay happy & healthy.

For me with all that I do for myself each day, allows me to know that
I am doing the best that I can, to enjoy each day as it comes, dealing
with my life’s problems using the coping skills I have learned along
the way.  I smile from knowing I’ve done what I can and accept that
which I can’t.  I am optimistic about the future.  I have already come
through the eye of the storm.  You CAN too!

Tuesday, May 3, 2016

May is Mental Health Awareness Month

courtesy  of Tumblr 
snapped by me:  05-02-16 

"Mental Health Awareness Month has been observed in May in the United States since 1949, reaching millions of people in the United States through the media, local events, and screenings.[1]
Mental Health Awareness Month also comes to the United States via the Mental Health America organization. During the month, National Health America runs a number of activities which are based on a different theme each year.
In 2010, the theme was 'Live Your Life Well'. [2] 'Live Your Life Well' was a theme designed to encourage people to take responsibility for the prevention of mental health issues during times of personal challenge and stress. The message was to inform the public that many mental health problems could be avoided by striving toward and making positive lifestyle choices in the ways we act and think.[2]
The theme for the 2014 Mental Health Awareness month was “Mind Your Health”. A focus of that year's theme was to create a motivational effort that will put toward the goal of building public recognition in regards to the importance of mental health and to the overall health and wellness of those around us. The association hopes to inform United States citizens of the connection between the mind and body; and intends to provide advice, tips and strategies that will encourage people to take positive actions and protective measures for one’s own mental health, and whole-body health.[1]
Mental Health America is not the only organization to run campaigns throughout May. Many other similar organizations choose to coincide with Mental Health Awareness month. National Children's Mental Health Awareness Day is one such campaign. This event is sponsored by the American Psychological Association (APA).[3]
Many other months are also recognized for similar mental health awareness programs. For a list of some in America, see:
Its purpose is to raise awareness about mental illnesses, such as depressionschizophrenia, and bipolar disorder. It also aims to draw attention to suicide, which can be precipitated by some mental illnesses. Mental Health Awareness Month also aims to educate communities about psychological disorders, while reducing the stigma that surrounds them. The month came about by presidential proclamation.[4]"

Source: Wikipedia