Get the vision care news and information you need in the AARP Eye Center.

Reply
Treasured Social Butterfly
0
Kudos
805
Views

Re: Long Term Survival with HIV

805 Views
Message 1 of 8

@jimc912563

 

Gold from your blog:

"My solution for this situation is to use the old saying in Management Consulting: uncover, discover, discard with a few small changes. Uncover, discover, Tell everyone, and change things. We are going to take an annual trip around our nation, and hold prearranged recorded interviews with disabled seniors of all sorts and let them tell us what their life is like, what barriers they face, what their dreams are, and if they use an assistive device, whether or not if serves them well and how it could be better. Both our daily webcast and the documentary series we produce will make it impossible to ignore these issues any longer. I am working with the head designer at what is generally regarded as the finest car and product design school in the nation to teach a class of graduate design students about design for the greater good. Having seen their work, I am immensely grateful to have this opportunity as we intend to design a new generation of devices that are inline with users needs, not manufacturer’s convenience."

 

 

"The key to success is to keep growing in all areas of life - mental, emotional, spiritual, as well as physical." Julius Erving
Report Inappropriate Content
0
Kudos
805
Views
Treasured Social Butterfly
0
Kudos
819
Views

Re: Long Term Survival with HIV

819 Views
Message 2 of 8

Hi Jim,

 

I want to give you some social media marketing ideas, but agree we will end up chatting via email for efficiency.

 

I didn't notice any links on your web site to Twitter, Facebook or YouTube. All are free; all are useful tools for making your message available to the masses. If you have not done so already, create, then link all these accounts. You'll cross pollinate and use each site to push out your message. Tip: non-forum social media posts should be short, should include photos, images, memes, snappy (lippy, even) but always positive headlines. Give useful info, like life hacks for rollator users. We'll chat more about this via email. I just wanted to give you something else to do today. Hahahaha. 

 

As for where to post here, that will depend upon the slant of your post. Forum posts can be longer, can be informational or can be conversation starters. If you are talking about de-warehousing as a health concern (mental acuity is certainly that), you might start a 'thread' (forum-speak for what we are doing here) on the Healthy Living forum. That's listed as a sub-forum under the Health Forum as shown below. You might also post under the Conditions and Treatments sub-forum, again depending upon your slant.

 


Under the Health forum find both the Healthy Living and Conditions and Treatments sub-forums.pngToo, I can see you posting something under Friends & Family or Random Thoughts and Conversations (sub-forums found, as shown, under the Home & Family forum). I bet most everyone here has a loved one with diminished capacities who is either being cared for at home or in a facility, so depending again on your slant, this might be a good place to start a conversation. 

 

 

Under Home & Family find the  Random Thoughts nad Conversations forum.png

 

 

I'm enthusiastic about your endeavors. I hope to be able to offer suggestions and ideas to help you clear the next set of huddles. To the bus, as fast as lightning! Smiley Happy

 

 

 

 

 

"The key to success is to keep growing in all areas of life - mental, emotional, spiritual, as well as physical." Julius Erving
Report Inappropriate Content
0
Kudos
819
Views
Info Seeker
1
Kudos
855
Views

Re: Long Term Survival with HIV

855 Views
Message 3 of 8

Thank you again. I have a question. Why can't I find your clone in L.A., your clarity and passion and engaging quality are wonderful. I am just a learner when it comes to social media. When you said 'I hope you start numerous threads...' my thought was - so do I. I would love your opinion on where to do this and get most attention. Not to me - to my projects. I hope that you visited the 'what we do' tab at my website as it explains our 3 projects in detail. 

I have always been a big picture dreamer and have been fortunate in my career to have opportunities act as well. The 15 year pause during my most prolific surgery years, put me out of sync with most of my peers, so I am having to rebuild a world of connections. We just received our 501c3 in August, and silly me, I thought that we'd have a bus and be on the road doing interviews by now. I, sadly, was the winner at a hackathon purposed with helping disabled folks by a PR firm - Team One - a division of Saatchi, that basically told me what I wanted to hear and did nothing that they promised for a year, so now, as I am a bit warier and a teeny bit wiser, I am doing the deed. That situation was a combo of 'that which does not kill us makes us stronger' and fool me once shame on you - fool me 2700 times shame shame shame on me. LOL. I am laughing as I type this as humor in the face of challenges has saved me longer than I can explain. I am not a victim 'woe is me - the pain oh the pain...' person, not at all. We all do our part and take our share. I love that I have a 25 year old Engineering PhD as my cohort and I get to mentor and teach him about the world while he makes me an engineer-a-like. I still haven't gotten that wonderful hat that he wears on train engineering days.

 

Anyway - I am procrastinating. jimchud@ our website is my email. I'd love to be in touch. And, I am all ears if you have suggestions on where to post.

 

Best

Jim

Report Inappropriate Content
1
Kudos
855
Views
Treasured Social Butterfly
0
Kudos
868
Views

Re: Long Term Survival with HIV

868 Views
Message 4 of 8

@jimc912563

 

Yep, your link works. 

 

Jim, you are my kind of people! The doers, the changers, the what if we did it this way-ers. Smiley Happy 

 

I checked out http://www.advanceabilities.com: it looks like a great initiative. I wish you every success. I hope you start numerous threads about what you are doing, what you are thinking, how we can be informed and how we might help change the warehousing of vulnerable seniors. 

 

 

 

 

 

"The key to success is to keep growing in all areas of life - mental, emotional, spiritual, as well as physical." Julius Erving
Report Inappropriate Content
0
Kudos
868
Views
Info Seeker
1
Kudos
884
Views

Re: Long Term Survival with HIV

884 Views
Message 5 of 8

Thank you epster, I guess that the link to my story came through - this is my first entry. I started AdvanceAbilities.com to change the landscape of living as vulnerable seniors - lower income, disabled or declining abilities who, in America, sadly, are warehoused, ignored, stigmatized as worthless burdens incapable of any contribution to anything. I have watched vibrant neighbors decline into shut-ins and unhealthy, depressed folks that no one pays any mind to and it makes me furious. I am going to change this - I just wish that the mindset in the UK and most other places around older people being valuable and essential to society even began to exist here in the US. Time to change some minds - bigtime.

Report Inappropriate Content
1
Kudos
884
Views
Treasured Social Butterfly
0
Kudos
892
Views

Re: Long Term Survival with HIV

892 Views
Message 6 of 8

PS Your story is also a little maddening. The unbelieveable BS national isms put you through! We're getting better, aren't we? A little? Part of the time? On some fronts?

 

 

 

 

"The key to success is to keep growing in all areas of life - mental, emotional, spiritual, as well as physical." Julius Erving
Report Inappropriate Content
0
Kudos
892
Views
Treasured Social Butterfly
0
Kudos
902
Views

Re: Long Term Survival with HIV

902 Views
Message 7 of 8

Hi @jimc912563 Jim, and welcome to the online community!

 

41 years!!! Wow. Yours is quite an inspiring story of goal setting, dedication and not laying down; thanks so much for telling it here. I hope you'll post often.

 

Epster

 

 

For anyone else wishing to know: World AIDS Day is Dec 1. Here's the website: https://www.worldaidsday.org

 

 

"The key to success is to keep growing in all areas of life - mental, emotional, spiritual, as well as physical." Julius Erving
Report Inappropriate Content
0
Kudos
902
Views
Highlighted
Info Seeker
1
Kudos
906
Views
7
Replies

Long Term Survival with HIV

906 Views
Message 8 of 8

I am in my 41st year of living with HIV. In college in 1977, I developed a 'flu' that the best minds at Yale could not diagnose. After my roommate dragged me to the student hospital, I spent 2 weeks finding out that I didn't have a whole lot of things, but the bug causing my fever, night sweats, painful swollen glands, rash, and oral candida or Thrush, proved elusive. Now today, if I walked into my doctor's office with those symptoms, he would immediately swab my mouth, and 2 minutes later, we'd have the 'talk'.

I didn't receive my diagnosis until 1984, when the first tests became available. 

 

In 1987, I volunteered for one of the very first clinical trials at the NIH looking for an AIDS cure. I didn't really expect anything to come of it, however, the drug we were given, DDC, was so toxic at the doses they gave us, that today I am the sole survivor of that 80 person cohort. I am blessed to have an opportunity to act in honor of the others. My legacy of that study, which found that DDC caused my and other's immune systems to destroy all of my cartilage. No disks, none in joints, and as I played many sports, today I am dependent on my rollator to walk. The slow down that I have experienced woke me up to the challenges that many of us disabled seniors or less able seniors experience every day. The pharmaceutical companies haven't done anything to assist me or the others that passed before me, which I believe is irresponsible. 

 

Are there others of you out there who had a clinical trial fail and actually make things worse for them too. My docs and I at the NIH, believe that we need to mobilize to make those companies share some of the profits they made off of our backs, so that those in need have a quality of life that they deserve. I founded AdvanceAbilities.com to help seniors in many ways and invite all to join us. I'd love to see responses here with the stories from others out there who have shared even a part of this experience.My story of survival

Report Inappropriate Content
1
Kudos
906
Views
7
Replies
cancel
Showing results for 
Search instead for 
Did you mean: 
Users
Announcements

Open Enrollment: Oct 15-Dec 7, 2019 Find resources to help you decide on the best healthcare insurance plans for you during Open Enrollment season