2:00 PM: We are wrapping up. Thank you to everyone who attended the webinar and followed along here. We will be posting a video of the webinar on our website next week. Special thanks to Dr. Rourke, Maggie Atkinson, and Greg Robinson for your contributions.
In closing, Dr. Rourke recommends an article by Maggie in the Winter 2010 edition of “The Positive Side” about her experience with HIV.
1:50 PM: Dr. Rourke is taking questions now.
Question: How can you tell how so the medications affect the cognitive decline?
Answer: Sean notes that some medications are shown to affect cognitive decline, but those are well-known so they can take that into account. Greg and Maggie point out that they have been on the same regimen of drugs throughout, and doesn’t feel that the particular drugs they are on have an effect on the decline.
Question: Which of the brain fitness exercises are shown to be effective?
Answer: All three agree that all six exercises work in concert, it’s not just one or another exercise. Marghi from Posit Science chimes in that the exercises have been designed to build upon one another, from the parts of sounds to the more complex language.
Question: Do other diseases create cognitive decline and will these programs help with those?
Answer: Dr. Rourke mentions chemofog– a condition that occurs when people have had chemotherapy. We don’t understand all of these mechanisms well.
Question: What are your plans moving forward?
Answer: Dr. Rourke thinks this has great promise and is planning a larger study on this. He feels it needs to be tested in a larger intervention trial and made available to more people. He mentions that Posit Science might want to translate the program into French or other languages to make this an opportunity to more people.
1:40 PM: Greg Robinson, an HIV+ physician, is speaking. He has been HIV+ for 25-30 years. He noticed many similar symptoms to Maggie which impacted his work life and his home life. The first experience with the Brain Fitness Program was challenging and painful for Greg- until about halfway through the program, when he noticed positive changes in his day-to-day life. Greg now “re-doses” with the Brain Fitness Program every year and enjoys it much more. Greg notes that there are challenges for people who have trouble motivating or finding time to do the program. Maggie agrees that it can be hard to motivate- she did it with her father, and feels that the “buddy” system did help her stick with it.
Greg notes that he is much more physically and socially active than he was- working in the garden, teaching, volunteering, and more.
1:35 PM: Maggie Atkinson, HIV+ lawyer and activist, is speaking. She started to notice a lot of problems with word and name finding, even simple words and names of close friends. She stopped doing public speaking and was no longer able to write legibly or follow conversations in noisy rooms. Dr. Rourke identified that Maggie also had problems with multi-tasking, in addition to short-term memory, word finding, and handwriting.
After doing the Brain Fitness Program for 8 weeks, Maggie found that her hearing, word finding, handwriting, and memory all improved. Neuropsychological tests bore this out. It gave her more self-confidence and the desire to try to learn new things like taking dance classes, knitting, doing jigsaw puzzles, speaking a new language, etc. Maggie recently did the Brain Fitness Program again, and found that she was even better at it than before.
1:30 PM: What can people do to stay their best in HIV-associated decline and aging? 2 things:
- What’s good for the heart is good for the brain: no smoking, regular exercise, healthy, diet, etc.
- Targeted cognitive training exercises.
For Dr. Rourke’s case studies, he chose the Posit Science Brain Fitness Program because if it works in aging people, it makes sense that it might work in HIV-associated decline.
Case study 1: highly educated man, age 52, with Mild Cognitive Impairment, did 40 hours of training with the Brain Fitness Program. A battery of neuropsychological tests were given before and after. There were significant clinical improvements in the tests in multi-tasking, learning, verbal fluency, and cognitive speed. There was also self-reported improvements in processing, efficiency, and day-to-day tasks.
1:25 PM: Fatigue and depression affect how strongly people report cognitive problems. So, it’s important to tease out whether the person actually has neuropsychological impairments or if they are depressed.
1:20 PM: Even with something classified as “Mild” Neurocognitive Disorder, work, adherence to medication, and quality of life are all affected. It’s also correlated with reduced survival (eg, shorter lifespan) (a caveat: this piece of research was done pre-HAART so may have changed.)
There are many similarities in HIV-associated decline and aging, like misplacing things, words on the tip of your tongue, trouble focusing, difficulty following a conversation or book, etc.
1:15 PM: Prevalence of HIV-related decline is very similar pre-HAART and post-HAART (HAART= anti retroviral treatment.) There are 3 types of HIV-associated decline:
- Asymptomatic Neurocognitive Impairment (ANI)- person scores poorly on tests but impairments don’t seem to affect daily life and activities. Usually a precursor for one of the more severe ones.
- Mild Neurocognitive Disorder (MND) – at least mild interference with every day cognitive functioning.
- Dementia (HAD) – severe interference with daily functions.
HIV-associated dementia is uncommon; MND and ANI are more common.
1:10 PM: Dr. Rourke talks about what HIV-related cognitive decline looks like. Impairments can include difficulties with memory, multi-tasking, motor coordination, word finding. Attention and learning are 2 of the most common areas of decline. It has similar symptoms as other conditions like brain injuries, Parkinson’s, etc. Because of this, it’s important to create an appropriate battery of tests to diagnose. This kind of decline is also very similar to what we see in normal aging- which leads to the theory that HIV might be accelerating the aging of the brain.
1:00 PM: Dr. Rourke is on the line and the webinar will be starting momentarily.
12:45 PM: If you want to follow tweets for the webinar, or add your own on Twitter, you can use hashtag #HIVwebinar.
Here is some background on the participants:
Our presenter, Dr. Sean Rourke, is a professor in the department of psychiatry and neuroscience program at the University of Toronto. He specializes in cognition in HIV/AIDS. Dr. Rourke is also the Scientific and Executive Director of the Ontario HIV Treatment Network. In this webinar, he will discuss the scope of HIV-related cognitive impairment and present case studies on the benefits of Posit Science brain training to treat this common condition. Dr. Rourke will be joined by two patients who will share their personal stories about using brain fitness to successfully ameliorate the symptoms of decline.
Greg Robinson and his spouse Randy Anger have been together for 20 years and share a love of home and nature. Greg is retired physician: his working career included family practice, public health, epidemiology, faculty appointments at both University of Toronto and McMaster University, and AIDS activist/advocate and volunteer. He now enjoys bird watching, yoga, meditation, drawing, writing, reading and OWL facilitation at First Unitarian.
Maggie Atkinson is an HIV positive AIDS activist and lawyer. She was born and currently resides in Toronto. She received her B.A. (Hons) and her LL.B from the University of Toronto. She was twice co-chair of AIDS Action Now!, a Toronto – based organization fighting for improved research, treatment, care and support for people living with HIV/AIDS in Canada. She was a founding director and chair of Voices of Positive Women, a provincial support organization run by and for HIV positive women. She also was a founding director of the HIV/AIDS Legal Clinic of Ontario. Maggie has been involved with the Canadian HIV Trials Network, as a member of the Steering Committee; chair of the Community Advisory Committee; and member of the Associateship Adjudication Committee and the National Ethics Review Committee. She has been an HIV positive representative on a number of provincial and national committees, including the Canadian Association for HIV Research Council, the Canadian Treatment Advocates Council, the Expert Advisory Committee on HIV Therapies, the Ontario HIV Treatment Network, and the Ontario HIV Therapeutics Guidelines Committee. Her personal interest is in HIV clinical trials. She has received local, national and international recognition for her work, including the Order of Ontario, the Law Society Medal and the first Red Ribbon award from the Canadian Association for HIV Research.