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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Disability Retirements
      #243131 - 11/12/08 11:13 AM

Good news, I believe my disability retirements are all done. I say "retirements" because I had to get approval from Social Security (August 3), my employer (October 30) and MassMutual (pending, but the analyst has told my disability lawyer the claim was approved on October 31).

Bad news is that I am disabled because I have HIV Associated Dementia, a subset as I have learned of Frontotemporal Dementia or Pick's Disease. The main symptom of the disease is inappropriate social behaviour. The Pick's Disease is the reason my Social Security claim was approved so quickly; Pick's is on the list of 24 conditions considered so serious that Social Security has targeted them for speedy approval.

I have been acting inappropriately in social settings for many years, but it was only in June of this year that I learned the cause of my bahviour was damage to the temporal lobes of my brain caused by HIV.

I see a psychiatrist regularly who has prescribed a drug regimen to control my behaviour. I also attend a group session to check my behaviour against accepted "norms".

So the big question, poppets, is what do I do now that I am officially retired? I have been working so hard on the disability retirements that I haven't had time to just sit and think about "being" retired.

I probably have a few good years, before I have to go into a nursing home and I should like very much to enjoy them. Travel is difficult as I have a great deal of trouble walking and maintaining my balance. I also do not feel comfortable in social settings were I don't know or trust everyone around me.

The AIDS Service Center here in Pasadena has a number of programs to get us "Dementors" out into the world and into social settings. I take advantage of as many of these as I can.

I paint, do paper crafts (I make sculptures from paper, a little like paper dolls but in 3D), and garden. I have a large garden so there is always some chore or other to do in it. I am able to garden since I can go at my own pace and rest when necessary. Also unlike walking, most gardening is surprisingly spent on your knees, almost like prayer.

Reading is hard as I cannot follow the plot or the author's argument. Television is a waste of time.

I could teach, but the thought of a student asking me a question is frightening beyond understanding.

Ah well, I guess I've answered my question. It's watercolours, paper dolls and gardening for me. Tea at four and bed by eight.

No bad, eh?

ScotCharles

--------------------
Life is a river.
Carpe diem.

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franfrog
Legend

Reged: 01/05/06
Posts: 1342
Loc: NJ
Re: Disability Retirements new
      #243132 - 11/12/08 12:59 PM

SC
I know how you feel with not knowing what to do. I have been on disability for most of the time since my diagnosis. I have a dog to keep me occupied, but since the depression set in, not even the dog keeps me occupied, sleeping does.

I am sure you will find things to do with your time. Crafts are always fun for me. You could always spend more time helping others here. :-) like me!



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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Disability Retirements new
      #243182 - 11/16/08 11:24 AM

I guess accepting retirement gracefully is a good thing, n'est pas?

--------------------
6 ft tall poz bear in Philadelphia

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dj1979
Guru

Reged: 03/02/06
Posts: 276
Loc: rural upstate NY
Re: Disability Retirements new
      #243187 - 11/16/08 04:08 PM

How about volunteering at another non-profit agency? I volunteer at our local Red Cross chapter, in the office, for just 4 hours a week. I also do "telerecruiting" for them, which involves calling people to schedule appts. to donate blood. Our Area Agency on Aging is always looking for volunteers, as is our local SPCA.

Just some thoughts - maybe you'll find something of interest to occupy your time.

Donna


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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Disability Retirements new
      #243232 - 11/19/08 10:04 AM

Frannie,

You must get your depression attended to, darlin'.

I have never felt so alive since my depression was controlled and the bi-polar, I never knew I had, was checked by medicine. Now I can enjoy the "high energy" days and not have the downside of those black cloud days.

You would be amazed how easy it is to get your depression controlled with just a few meds. Don't listen to psychotherapists, you cannot just talk your way from depression.

Fran, believe me, it is good to be in the sunshine all the time than under a cloud.

Peace and Love,

ScotCharles

--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Disability Retirements new
      #243234 - 11/19/08 10:13 AM

Good point.

I've put out some feelers about volunteer consulting on employee benefits in situations where I am under no time pressure. Pressure stresses me out and shows up in my body as profound weakness.

I am also trying to write an article on one of my ancestors, Bill Hay, who has two stars on the Hollywood Walk of Fame. Bill was the first person to speak on broadcast telelvision and was for over two decades the announcer on the Amos 'n Andy show on radio, hence the two stars. Like so many Scots, he didn't realize the potential of his achievement. Bill thought televesion would never go anywhere and stuck to radio, where he did well, nonetheless. Sadly he was caught up in the racist scandal that took the Amos 'n Andy show off radio.

Thanks,

ScotCharles

--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Disability Retirements new
      #243235 - 11/19/08 10:16 AM

C'est qui.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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Toadman
Newbie

Reged: 08/27/08
Posts: 3
Re: Disability Retirements new
      #243236 - 11/19/08 10:22 AM

qui s'inquiète ?

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franfrog
Legend

Reged: 01/05/06
Posts: 1342
Loc: NJ
Re: Disability Retirements new
      #243252 - 11/20/08 07:49 AM

Oh trust me I will be getting it controlled. I have an appt Monday the 24th, so I am waiting patiently. Hope the first dose get it, if not I will be willing to try again until its right!

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Disability Retirements new
      #243256 - 11/20/08 09:38 AM

Good show you.

Don't worry if the first round of meds don't work. My psychiatrist and I had to fiddle for weeks with the meds until we found the right combination. Keep working on it and be honest and insistent with your psychiatrist. So many psychiatrists these days are nothing more than pill pushers who see a patient every ten minutes.

If you end up with a pill pusher psychiatrist, plan your meeting with him so that he can make a judgement on your meds and get you on your way. The meds may make you too sedated or leave you hyper; tell him how you are not comfortable.

My regimen is 150mg of imipramine, 1000mg of Depakote, 75mg of Respiradone and 125mg of Seroquel. I am alert, cheerful, and able to get about my day. For other people this regiment could leave them far too sedated or too jumpy.

Good luck and keep working on it until you find the right combination.

Out from under that dark cloud,

ScotCharles

--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Disability Retirements new
      #243257 - 11/20/08 09:53 AM

I don't understand why you would say that my post is disturbing.

Many people with undetectable viral loads will, given a long enough time infected with HIV, develop Minor Motor Cognitive Disorder (MMCD), an early from of HIV Associated Dementia.

The virus is present in the brain from the moment of infection and remains there protected by the blood brain barrier, resistent to any anti-HIV meds. In the brain, it very slowly destroys brain cells. The brain is quick to rewire; but, over time there are fewer brain cells available for rewiring. It is then that the effects of the infection begin to show in lack of muscular coordination, memory loss, hallucianations, and inappropriate social behaviour. These symptoms occur even with undetectable viral loads given decades of infection.

Not to worry, at undetectable viral loads, the process can take several decades.

Learn to live in the moment and do not future trip.

Be at peace and know that all is as it should be,

ScotCharles

--------------------
Life is a river.
Carpe diem.

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