Thursday, 29 October 2009

Jenny's HIV Photography Project

Jenny has posted her request for volunteers for this herself on the HIV West Country Woman's Forum :

And I just wanted to say I have met her and think it is a great project - so if any women from Cornwall and the West Country especially want to get involved please do not fear exposure or you will be treated unsympathetically - as you can remain completely anonymous and her attitude is great.

So I have decided to work with this lovely young woman in her final year of a photography degree in the Uni down the road from me who has already done some great work with people waiting for transplants and now is doing a project on people in the UK living with HIV for her final year.

Her interest... As I understand it -

She has spent time in Africa with children with HIV where she became aware of HIV and now wants to reflect - through images and accompanying text- the true picture/situation of people living with HIV in the UK.
She is happy to do it completely anonymously and if anyone agreed to be photographed she can do it in such a way that you are not identifiable. Would like to meet with people but happy just to talk on email etc.

She is at college near me in Cornwall ( Falmouth Uni) so is happy to talk to people from Cornwall but can travel to meet people depending where they are based and as she has links with Bristol and Exeter is particularly keen to meet up with those living with HIV in Bristol and Exeter, especially women.

But if you do not live in Cornwall, Exeter, Bristol, or the the West Country at all I am sure she would still love to hear your views and experiences of living with HIV in the UK. Which even if she can not include photographs based on your experience, what you say I know will inform her work.

I feel we with HIV so need to help and assist young people like this who are interested in the subject of living with HIV from the perspective of what it is actually like and what the reality is now .

As young people are our future, especially young people who are training now to have posts/positions within the media of the future

She is a lovely young woman who would do this well.

Below is her proposal I said I would pass on.

My name is Jenny Cowie and I am a photography student in my last year at Falmouth University. I am currently trying to do a project that hopes to raises awareness about HIV in more rural areas. I don’t think that the general public are aware of anything but the stigma related to HIV and AIDS. Since I began this project and started talking to people I have been shocked how much my views have been affected by stereotypes…and how wrong I have been!!

Remaining anonymous is not an issue. I would just like to meet people, hear their stories and see how they think HIV could be better represented so that it wasn’t such a taboo.

If you are interested and want to look at some of my work please go to my website (pay particular attention to Waiting…)

You can contact me on 07817785170 or



Tuesday, 6 October 2009

Caja -Sad circles within circles

It is good that my lovely Caja will not read this !

She will not as she has deleted me from her Facebook and has understandably long preferred not to read what I blog here.

So I feel it is 'safe' for me to post it here - I so hope because I do not want her ever to read this. This is for not her and it is NOT her concern - it is my stuff.

Sadly, when I made my life so public in order to lend support to others who suffered PNI - Post Natal Illness - unfortunately the side effect I did not predict was I made my very private daughters life public too........

Part of the problem between us is she is a very private person and I am so totally the opposite as you may have guessed!

If I was not a public person I would not be blogging my life for anyone who wishes to to read.
Caja hates this particularly about me

As if I disclose about my life inadvertently I disclose about hers . So she now chooses to tell and share with me as little of her life as possible.

Understandably as the little I know the less of Caja's life I can disclose when blogging my own

That was not fair on her and one of the reasons I can no longer go on the forum I created
It is a never ending destructive circle between me and Caja regarding our relationship .

If I am to have her trust I need to not be myself - something I can not do.....sadly not even for her.

So we go round in never ending circles - with me getting sadder and sadder that she does not love me just as I am for what I am or despite who I am , and thus writing about my sadness online and blogging it more and more ..............

and this leads to her being less able or likely to relate to me because she is a private person who will never relate to anyone emotionally who is public about their emotions and private life

So understandably this morning Barry is not speaking to me !!
And I have to stop upsetting him like this as he is all I have left now.

As when doing a montage of our family photos for my living room I got so sad and freaked out last night and told him my life had come to nothing because my daughter does not even speak to me - and in part blamed him when in fact it is not his fault at all - he did his best and we can only ever do our best

The trouble is I really do not have a normal relationship with my daughter - and right now that is all that is important to me - that I make my peace with her and have a bit of a normal relationship with her.

For example.

She stayed here in early summer this year for 4 days - not to see us but to see her childhood & other friends. She hardly spoke to me and when she did it was basically just one word and made it plain she wanted me to stay out of her way. I tried to hug her a couple of times and she just pushed me away.
I felt so hurt it was painful

Since then - about June and it is now October!!!- I have not heard from her in any way or had a single conversation with her. I have tried .....I have MSNed her and texted her but she never replies....

I accept that she has left home - and as she pointed out a while back ............ she left home when she was 17 and is now 20 so it is about time I accepted this ......and she now lives over 260 miles away and does not want to speak or relate to me.

So I have to find a way of coming to terms with this!! - But it is tearing me apart and it is tearing Barry and me apart

I know in the cold light of day it can not be all my own fault or Barrys i.e the situation with Caja but I do know that half the problem was how angry I get when I have had a drink and that towards the later part of her life with me when she would do nothing round the house and my leg was so painful I could not do it, I was OK until I had a wine or two then I would get nasty and this drove her away - so that was so totally my fault.

But I am so sad.

I had dreams of a time Barry would be home full time - but not like this............... not due to HIV - and a time when we had paid off our mortgage and we could enjoy ourselves as a family.

I knew Caja probably would not be living at home by then but I was looking forward to lovely visits when she told me about her life and what she was doing and hugged me hello and goodbye .

Not the situation I have now that Caja does not talk to me ever

I am feeling so sorry for myself - which while this may be hard to believe from my ramblings here, is something pretty new to me as I never used to indulge in self pity - Up to about 4 years ago I just trucked on.

Monday, 5 October 2009

Oh Dear - Not much hope for us then !!!

At 56 I already have memory loss and my mum died of Alzheimer's/Dementia (they did not bother to diagnose exactly what she had - too late by then all they knew is she had lost her marbles and needed round the clock care )

So with this family history and HIV I do not hold out much hope of my keeping my my wits for that much longer. Anyway it is all too obvious to me that they are on their way out already

So I had better break the habit of a lifetime and vote conservative so at least I will get cared for in a care home if I pay £8000 without my daughter losing our family home!

: and pay what top ups I need to.

It is my biggest fear I loose my mind and end up with HIV in a care home!!

Do not tell me I will be respected? Or that I will not even be abused - I have seen it first hand , so you will not convince me .

I worked in care homes when young and visited elderly people I know often over the years

Also both my mother in law and my own mother were in care homes and while I guess my mum got better care than my MIL neither was what you would wish for......all was lacking in so many ways

But with HIV I know that I will never be treated with respect
Neurologic Disease Facing Patients Aging with HIV

from Jules Levin

By now it's pretty clear aging with HIV and getting to over 55 yrs old is putting many patients at increased risk compared to HIV-negatives for frailty, increased neurological disorders and cognitive impairment, kidney disease, CVD, and of course bone disease and fractures.

Mortality will start to increase soon as a result of this development while we have been blindly rejoicing the success of HAART for years. BY devoting all our resources overseas we lost sight of these developments, and like turning an ocean liner around it is difficult now to get the NIH & NIAID to refocus effectively to address immediately tis time sensitive problem, if it's not too late already. the fact is currently it's estimated 20% with HIV in the USA are over 50 yrs old and by 2015 50% will be over 50. For the first time a significant portion of patients are reaching 65 yrs of age and facing increased HIV-related risk for vascular disease due to ARTs and HIV.

Mitochondrial toxicity has been present for 20-30 years for many patients. Abnormal metabolics including lipoatropy are threatening to cause neurologic disorders for older patients.

Frailty and gait disorders are emerging in older patients and in MACS. 60% of patients at 45 yrs old on average have osteopenia and 15% osteoporosis, isn't that stunning. It is time not to say we are aware of this, as researchers are saying, but it is time to declare an EMERGENCY situation before it's too late, it's already very late to or too late for many patients to benefit from research in this area.

What is the NIH thinking, where is leadership? Researchers, doctors, patients, and advocates should raise their cries for a declaration of emergency to address this NOW! Let me briefly mention HCV coinfection. 10 years ago I raised discussion about this problem that 30% had HCV in HIV, that 80% of IDUs had coinfection, that we were ignoring the needs crying out for greater attention. HCV became the leading cause for death and hospitalization besides AIDS. This problem persists, patients have been dying of end stage liver disease and the Federal government and advocates never launched a proper response. Will the same thing happen regarding aging?

Neurological Impairment Persists Despite HAART: "adjunctive therapies needed" - (08/29/09)

We need a proportional response to the level of problem we face
"The results of this study extend previous observations indicating that current HAART regimens are inadequate to treat HIV-related NC"...."These findings indicate that patients with more severe memory impairment and executive dysfunction are more likely to remain neurocognitively impaired despite HAART"

Mechanisms of Neuronal Injury and Death in HIV-1 Associated Dementia - (10/24/08)
Infection with the human immunodeficiency virus-1 (HIV-1) and acquired immunodeficiency syndrome (AIDS) remain a persistent and even growing health problem worldwide.

Besides its detrimental systemic effects on the immune system, HIV-1 seems to enter the brain very soon after peripheral infection and can induce severe and debilitating neurological problems that include behavioral abnormalities, motor dysfunction and frank dementia.

( yes I feel have this already can feel it it is so sad )

Infected peripheral immune cells, in particular macrophages, appear to infiltrate the CNS and provoke a neuropathological response involving all cell types in the brain. Both viral and host factors, such as the viral strain and the response of the host's immune system, strongly influence the course of HIV-1 disease.

Moreover, HIV 1-dependent disease processes in the periphery have a substantial effect on the pathology developing in the central nervous system (CNS), although the brain eventually harbors a distinctive viral population of its own. In the CNS, HIV-1 also initiates activation of chemokine receptors, inflammatory mediators, extracellular matrix-degrading enzymes and glutamate receptor-mediated excitotoxicity, all of which can activate numerous downstream signaling pathways and disturb neuronal and glial function. Although there have been substantial improvements in the control of viral infection in the periphery, an effective therapy for HIV-1 associated dementia (HAD) is still not in sight. This article will review recently identified injurious mechanisms potentially contributing to neuronal death in association with HIV-1 disease and discuss recent and prospective approaches for therapy and prevention of HAD.

"Mood changes approaching the extent of disorders are one of many problems associated with HIV-1 disease"

(God mood changes - tell me about it!
I have suffered this for over 7 years now! Yes you may say it might not be due to HIV , but I think it is . And does it matter what it is due to, I am suffering this and it is awful for me right now as I am all too aware it is happening to me right now )

"Neuronal death by apoptosis appears to be one of the hallmarks of neurodegenerative diseases including HAD"
"While HAART has tremendously improved the treatment of HIV-1 infection and disease in the periphery, an effective pharmacotherapy for HAD (HIV-associated dementia) is still not available."
"HAART is unlikely to prevent the entry of HIV-1 into the CNS"

"Neuronal damage and loss has been observed in distinct brain regions, including frontal cortex"......"signs of neuronal death were not clearly associated with viral burden or a history of dementia"...."aging-associated amyloid accumulation with Alzheimer's-like neuropathology"..... "Altogether, it seems that a vicious cycle of immune dysregulation, inflammation and BBB dysfunction is required on the side of the host to allow sufficient entry of infected or activated immune cells into the brain and to permit neuronal injury"
"These findings suggest that inflammatory cytokines, including TNF-aand IL-1beta, may have important regulatory roles in HIV-associated neuropathology"

The prevalence and incidence of neurocognitive impairment in the HAART era ACTG Research (08/30/07)

Even with HAART therapy, our data suggest that there is a significant subset of subjects on ALLRT who have mild-to-moderate neurocognitive impairment, and a subset that develop impairment after starting HAART. Additional studies are needed to understand the mechanisms behind neurocognitive impairment and to develop strategies to prevent and treat this condition."

HIV and Aging: The Long-term Consequences of Successful Antiretroviral Therapy - (09/11/09)

Study in Neurology journal (Aug 2008) Reports Alzheimers Appears to Precede Frailty and Study in Jnl of Geronotology (2007) in the MACS Cohort Reports Risk of Frailty Higher in HIV+ vs HIV-; is early onset of Alzheimers or some other brain or cognitive dysfunction related to early onset and higher rates of frailty among HIV+? - (06/08/09)

Higher frequency of dementia in older HIV-1 individuals The Hawaii Aging with HIV-1 Cohort - (11/18/08)

Dementia with features of Alzheimer's disease and HIV-associated dementia in an elderly man with AIDS (case study) - (05/13/09)

Neurologic Complications of HIV Disease and Their Treatment
The widespread use of ART has led to a decline in the more severe neurologic complications
of HIV, such as HAD, but people living with HIV continue to ...

HIV-1 Infection Is Associated With an Earlier Occurrence of a ...
"We examined whether the FRP was more likely to occur among individuals with comorbidities of cancers and neurological disorders, ascertained according to ...

Neurological/Cognitive Impairment on HAART: 50% on HAART have ...
Many factors likely contribute to ongoing neurologic complications despite the ability of current drugs to profoundly suppress viral replication. ...