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HAND -HIV AIDS Neurologic Dementia
Posted: Tuesday, December 2, 2014 12:59 AM
Joined: 11/4/2014
Posts: 3

Came to this site a couple of months ago looking for information, community. The LGBT community either isn't interested or is unwilling to talk about dementia HIV related or not.. Thank you for starting the LGBT wing here.  My husband of 10 years is 55 and he is well into the early stages of a dementia caused by the HIV virus itself that is active in his brain a/k/a H.A.N.D. Approximately 2-3% of those on HIV medications are effected. He has been cleared of other possibles/MRI/scanned/blood tested and Neuro interviewed over an almost two year period.  He is in great shape physically, undetectable form many years with HAART, he runs three to four days a week, 3-5 miles each time. He has global cognitive effects - and has gone from being a surgical veterinarian who could do body weight/dosage calculations in his head to having sustained difficulties doing basic addition, with subtraction, multiplication and division out of the question. Organizationally he can only hold two or maybe three simple steps and the goal can become elusive.  Time can dilate, and a simple task can become a jungle.  And it can all be served up in a different intensity on any given day or time of day. He is showing some signs of sundowning so I'm trying brighter bulbs in the fixtures and getting as much daylight as possible. His 10 yearish prognosis looks like 3-7 years of "gradual losses" a diagnostic joke really and then 7-3 years of falling off the cliff losses -balance, walking, loss of coherent speech, motor control.
Mimi S.
Posted: Tuesday, December 2, 2014 8:52 AM
Joined: 11/29/2011
Posts: 7027

Hi David,


Thank you for sharing on this board.


We have had self identified LGBT folks on alzconnected previously.


The administration and many others are hoping that this board will be found by that group. As indicated by your post, there are problems, like HIV, that are unique to that group.


It sounds as though your partner is doing some of what several of us on thee boards feel have contributed to our long stay in Early Stage.

1. Take meds as ordered.

2. Strenuous physical activity. Yes he does that.

3. Strenuous and varied mental activity. Sudoku, puzzles, reading at his level, writing his own biography. Coordinate with photos. Even brushing teeth with non-dominant hand is good.

4. Mediterranean Diet.  A little red wine is OK. No smoking. I take Omega 3 and antioxidants. Some practice aromatherapy.

5. Social stimulation. Most of us do to tolerate a lot of noise and large groups. 

Posted: Monday, February 9, 2015 1:06 AM
Joined: 11/4/2014
Posts: 3

My husband was very high functioning and likely had been compensating for a long time before he was overwhelmed. After three years of multiple testing finally getting a diagnosis. My experience -keep breathing. So much is shifting in your life, don't let very real worries about the future destroy your very sweet now. I am having to grow in ways I hadn't expected or necessarily wanted wow am I really a long term care giver now, oh and an unlicensed paralegal, financial advisor), but I'm doing it just the same. Finding and making room for myself to grow, remembering to take care of myself, to forgive myself, is desperately important. I'm doing somethng really big and protracted and I won't have all of the answers - am I ready (and unafraid) to ask the questions I need to take us forward? Have I followed up and met the deadlines required (thank you CA State Disability -you bastards). Have I asked for and sought the help I need? (how the fuck did I end up in therapy again?) Just an aside - My mother was chronically ill throughout my childhood no one ever talked to me about it openly and honestly, but it was obvious even to me at 5 years old that something was wrong - I had to piece it together myself. Not speaking about it -in or out of the house lead me to think protracted illness was shirking, shameful or deserved. In hind sight, it took a lot of energy not to talk about it with my sister and I. My family dealt with it really poorly and we weren't really able to step up to it - because we didn't have enough information we couldn't relieve the tension with talk or humor because it was a secret.. We survived it, yes but I am seeing now we could have stepped up and had an entirely different experience. I am learning from others, having my situation and then sharing that with others. My sharing firms up my experience -oh, I am capable - oh I can find a way forward for myself and my family.

Posted: Monday, April 27, 2015 8:39 PM
Joined: 3/4/2015
Posts: 111

Dear davidsix -- I am an old woman with an even older husband who's Alzheimer's is slowly getting worse. That is what brings me to these boards. But, years ago (nearly 30 years ago, now) I worked on the frontline of the AIDS catastrophe that was emerging in the 1980s. I was a public health nurse and I remember AIDS dementia, but it did not last long because the patients did not last long in those days -- we had no retroviral cocktails yet, and our science was haltingly slow!

Your posts made me hit the web in search of where HAND has evolved in recent decades and yes, it is far worse than I remember. You and your husband are proof that people can (and do) live with this disease for years and it is equally devastating as any other form of dementia. My heart goes out to you, and to him!

You are clearly a person of strength, capable and willing to adapt and learn whatever is needed to safely guide your family toward a place of safety, greater wellbeing and hopefully sanity and support! I do hope there are friends, a community of people who love you (both), who will be supportive and help sustain you on this long and tiresome journey.

Please take good care of yourself. Do not let your sacrifices on his behalf leave you weary, worn out or defeated. In order to "be there" for him, through all this, you must also make a healthy life for you! I wish you well. I wish you happy moments, great laughter, fond memories and loving encounters with him, even as the man you love slips away from you. That is all any of us can hope for as we gather our courage and face another day living with dementia.


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