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Neurofeedback Training + near infrared light stimulation for dementia - Progress Notes
Joan is noticable better at managing steps which may have to do with improved depth perception (a commonly reported benefit fo near infrared light stimulation to the eyes). She also shielded her eyes today from the morning road glare which has not happened in years. She's more spontaneously responsive and appropriate to the conversation or question being asked or the situation.
Took another 800 mile ride with the Star Touring and Riding Club to Vermont and back without incident. Joan had a good time for the second year in a row after not being able to manage the trip for two years before.
From Joan's husband: I noticed something new again. Riding motorcycle, she looks over my left shoulder. At least twice yesterday, as I was approaching a left turn, I felt her hands putting pressure on my waist in anticipation of the turn. I had been feeling a bit of disappointment in her progress lately again, then she goes and shows something like this that drags me out of it.
This kind of response requires a higher level of visual distance and balance response processing that was not present for at least 3 years prior to now.
Joan was in living room at least 20' away from Nina, she said 'Joan come to the bathroom where she was putting towels away. By the time Nina placed the towels, Joan arrived at the bathroom. Nina texted John (husband) to see if this was noteworthy and John indicated that Joan had recently been responding more to verbal directions. Joan was also navigating the steps up into the caregivers house which had previously been a signfiicant challenge and would not have happened without direct physical contact, encouragement.
Joan is walking better, more deliberate and navigating stairs more easily, as observed by both husband and caregiver, she has expressed her feelings directly and quite coherently on video. Her visual disturbance has significantly improved and is now engaging steps with hesitation and then making her own independent judgement as to how to manage the stairs going up and down. Saw the family dog and said 'hi lucy' last week and this hasn't happened in years. We'll put a video up of her talking to John shortly.
Joan sat down at the kitchen table and noticing some coffee in a cup said, 'oh coffee' and proceeded to drink it. She also was then presented with a hot dog for lunch and she said, 'ooh, hot dog' with appropriate inflection tone prosody. She's responding appropriately to my questions about how she feels and if she wants water or needs to go to the bathroom. These behaviors are becoming more common in their frequency.
Joan came in and greeted me with a wave and when I said what are you doing see said, 'greeting you'. She commented on Nina's doing something nice for me and noted it was time to go. She also sang a little song to Nina and we'd not heard her sing a tune with lyrics of her own making that were coherent! She said when she had had enough and wanted to go home, responded to my asking if she wanted water with, 'sure'. The level of fluidity and coherence is certainly increased since adding the intranasal and transcranial direct current stimulation TDCS.
John told me that he and Joan rode to Vermont on the motorcycle last weekend and it was a great trip. She was happy and participated and didn't have any trouble either riding or being in a new situation. They've not been able to make this trip for the two previous years as she was not in any shape cognitively or physically to handle the 800 mile journey.
J's gait was slower and her face was showing distress. I said are you ok? She said, "I don't know, I can't remember anything!" This was clearly stated and with appropriate eye contact and emphasis.
J recognized her husband John and called him by name on 5/6 for the first time in a long time. She also remembered the name of the cat and repeated my name when I said it in the office today. She responded to my questions about how she was doing with, "I don't know how I'm doing, I don't know anything." I said this is hard to tolerate and she said, 'yes, it is." I reassured her that we are working to help her remember more and she's come a long way." Her babble and repetitive tapping persists with clear moments of recognition and response. More appropriate grammar and exchanges of information happening.
In general, I'm finding it much easier to communicate with her. I ask questions and expect rational answers, which I seem to get more often than not. Certainly more often than a year, or even a few months ago.
Last year, 13 months ago to be exact, I posted this photo of my wife receiving an Near-Infrared Light (NIR) treatment for her Alzheimer's-like dementia. Here's what's happened in that 13 months while under the care of Dr. Marvin Berman at Quietmind Foundation in Plymouth Meeting, PA. .
Through the use of the infrared light therapy, her mood changes greatly dissipated. She had already been on Ativan for that purpose, with some modest success. After Dr. Berman introduced the NIR treatment in December 2013, the mood episodes became far less frequent, and far less extreme. In that time it was revealed to me that Ativan also makes dementia worse. With that knowledge now in hand, I weaned her off the Ativan, relying totally on the NIR treatments, successfully. Her moods continued to be manageable, but by April, I saw her cognitive condition deteriorating further. I was about ready to give up, introduce antipsychotic drugs to control moods, and allow the dementia to take it's natural course. Dr. Berman suggested we give neurofeedback a try. He had been wanting to do it for a very long time, but I didn’t think Joan would sit still for it. Surprisingly, she sat through the entire half hour the very first time, and has continued to sit through each treatment, twice a week, every week since April. Her moods continue to improve. She can be cantankerous sometimes, but it lasts for minutes rather than days, and rarely with any real severity. Cognitively she has improved as well, though not a lot. Her symptoms place her between the sixth and final stages of dementia, so most any improvement will appear insignificant to those who don’t know her. The charts and graphs of her brain’s electrical activity showing definite progress toward normal levels of activation and connectivity show a different story, so in those graphs, lie hope.
Joan continues to ride motorcycle with me, often. She can spend all day with her primary care giver, Nina, going to the store and parks, or to Nina's mother's house where there is always activity. Tonight she's going with me to another Blue Grass concert. We made it through the last two Sunday morning church services entirely, which is a big improvement. Earlier in December, she made it half way through "The Ghost of Christmas Present" from "A Christmas Carol", being presented after the church's Christmas Dinner. I notice these small gains and am thankful for them.
I don't know where this is all going. We continue the NIR treatments twice a day at home, and the Neurofeedback twice a week at Dr. Berman’s clinic in Plymouth Meeting. I'm not seeing the cognitive gains lately that were apparent initially, but I can honestly say I haven't seen regression. Her therapist doesn't really know what the future might hold in store either. Dr. Berman muttered under his breath at the conclusion of a session last week, "that's incredible". I asked, "What's incredible"? He responded, "Her brain is normalizing". There is hope, and that's what I continue to function on.
My purpose for putting this all out there, is that Dr. Berman needs more folks like Joan to participate in research on this treatment. Folks with early stage dementia have a far greater potential for success. If Joan's modest improvement is any indicator, it seems that anyone experiencing dementia is a candidate. If you know someone who might be interested, please pass my contact information along to them. I'd be happy to get them in contact with Dr. Berman.