Brain-lock???

[swpanther1]

I'm sorry, I don't know how to describe this issue...I see my neuro for my 6 month check up tomorrow, and I'm not sure how to describe this latest issue/symptom/etc. Please bear with me:

I retired from the judiciary/state four years ago. I had goals for myself, but four years later they are not done. In a way, I have self-isolated (although I do go to the grocery store, run errands, etc---but that's pretty much it. I worked with psychologists for 25 years, so I know what solutions to this part would be...but I don't have the drive or energy to fix this).

I've been trying to get organized, go through half-empty boxes of things (papers, parents' papers I inherited, etc). I have dresser drawers full of pictures...my kids, my grandchildren, my parents, time living overseas, etc. However, when I try to go through the pictures, it's like going back and activating memories. Quite a few make me so sad. I have tried to "disassociate" from things and pretend to shut memories out, as if they are just strangers. It's a struggle and I just have to leave the room. Same with my parents' papers....memories creep in and I am unable to finish.

I was able to shred a full box of Performance Evaluations dating 1990 through 2014....it was cathartic.

This evening I felt a flash of panic and some kind of "brain lock"....and a sense of wanting to just throw things out without looking at them--for which I would then feel horrible.

What on earth is going on?? How do I describe this to my neuro without sounding crazy???

Thanks for listening. (Yes, I am medicated....150 mg of Wellbutrin, low dose of Zoloft. Rebif shots, ibuprofen. Clonazepam as needed and at times a sleep aide.)

[pennstater]

Not sure I get the "brain lock" feeling. Is it a reference to the whole text and not being able to start or just the feeling of wanting to discard without reviewing?

I can relate to a point. For me, paper organization is the hardest, which includes photos. Photos also includes digital filing on the PC.

For me, it is because my brain thinks of multiple ways to organize. Like photos: chronologically, by family/people, by location, etc... Then my brain wants to overthink it and start with sub categories of filing. It then feels overwhelming.

Is yours strictly an emotional issue? You mention painful, is it a matter of needing more time to heal from a loss? Or does the volume feel overwhelming? Or not sure how to start? For me, I just had to stop overthinking it, and just dive in.

I did get to a point where I I was ready to toss without looking - my rationale was if I hadn't missed something by now, do I need it? But so glad I didn't. There were some gems in my parents paperwork: letters to my Dad during WWII, my parents house purchase for 4K, letters I wrote home during college, etc... Of course, most papers discarded, but the keepsakes in them were priceless.

[SNOOPY]

Hi swpanther1, it's nice to see you

I wonder if you are dealing with a grieving process, whether loss of family members, friends, or even seeing pictures of you before MS entered your life. It's very easy to feel overwhelmed and even have difficulty dealing with memories, good and bad.

and a sense of wanting to just throw things out without looking at them--for which I would then feel horrible.

It's easier to just throw things out rather than cope with memories of those items or pictures. even when "things" are gone the memories are still there. I know you are taking medications and have done Therapy, but maybe it's time to see your therapist again and work through why this is becoming a trigger for you now. Just a thought. I'm not sure this is something your Neurologist will be able to help you with

[Myoak]

Hello swpanther!

First, let me say that I lived in the northwest corner of NM for several years and loved it! The climate is spectacular, as is the topography.

To answer your question of how to describe your present concern with your neuro... I think you did a great job describing it in your post so I would just go with the same explanation. It doesn't sound crazy at all, not at all. Just tell him/her that is how you feel. Its perfectly okay to let your appointment take its course in conversation and whatever changes may be recommended, if any.


May I address something you mentioned about the notion of self-isolation? Earlier today in Berlin at the ECTRIMS conference an abstract was presented which may be beneficial to you. I'll post it here. I want you to know you are undoubtedly a beautiful, amazing person and there are people who want your touch, and need your influence in their lives. Not only will they be blessed by you reaching out, but you will be, also. And, it is quite possible that your concerns about present issues may very well resolve as you develop a social network. Best to you! Here is the abstract...

Social network structure is a novel protective factor related to cognitive reserve in MS

Abstract: P704
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools

Introduction: The social network (SN), a model of dynamic interrelationships among individuals, is an emerging determinant of health in neurologic disorders. Strong SN structures promote cognitive resilience in normal aging as well as dementia. Here, we present the first study exploring SN as a protective factor for cognition in multiple sclerosis (MS).

Methods: Fifty MS patients completed SN surveys. One patient was excluded for having a SN of one. Exploratory k-means cluster analysis (2 clusters pre-defined), performed by entering six SN variables (size, max degree, mean degree, density, effective size, constraint), yielded one cluster (n=35) reflecting a protective SN structure: larger SN size, higher effective size, lower constraint, lower density. These features are associated with better health outcomes in neurologic disease. The smaller cluster (n=14) was characterized by an at-risk SN structure: smaller SN size, smaller effective size, higher constraint, higher density. Group differences in the following variables were evaluated: age, sex, education, IQ, EDSS, T2 lesion volume, atrophy (whole brain and regional), cognition (memory, SDMT), fine motor function, depression, fatigue, and leisure activity participation across three domains: cognitive, social, exercise. Binomial regression to predict group membership was conducted. Finally, using principal components analysis, a SN factor was derived and its association to variables of interest was evaluated.

Results: The at-risk SN group had worse memory (p=.005), lower IQ (p< .001), higher EDSS (p< .001), and larger decline in exercise (p=.001) and social activity participation (p< .001). Predicting SN group using binomial regression and entering IQ in step 1, the independent contribution of memory remained significant at trend level (p =.072). Using SN factor, lower SN was associated with worse memory (p=.018), lower IQ (p< .001), and greater decrease in exercise (p=.037) and social activities (p=.002).

Conclusion: We have identified a pattern of protective SN characteristics in MS related to better memory function and maintenance of leisure activity participation. These results suggest an underutilized and potentially modifiable lifestyle factor contributing to cognitive reserve. SN is a promising protective factor that may be a useful outcome variable for future clinical trials of cognitive treatments in MS.

[gargantua]

swpanther, I just spent many months going through my younger sibling’s very packed home after his unexpected death. I think we are inclined to attribute some very natural reactions to MS, although MS certainly doesn’t help.

Sometimes I’d go into a room and get a little done and get distracted - in fact it happened often, and I’m sure it had to do with coping with certain memories and realizations about my changing family and who will ever be interested in this stuff, aka grieving.

It did not help that every single thing required a decision. What you’re doing is very rigorous work. So, there is a big existential component to what you’re doing, and the grief process does figure in. Perhaps the mental rigor is harder with your MS, but I would not assign a new special MS-related diagnosis to your experience here. Asking for some help with the chores could be a good start? That would also get other people involved per Myoak’s ideas.

And glad you’re talking to your neuro about it.

[swpanther1]

Talked with neuro--a bit long of a read

Hello and thank you all so much for your replies...

Pennstarter: "For me, it is because my brain thinks of multiple ways to organize. Like photos: chronologically, by family/people, by location, etc... Then my brain wants to overthink it and start with sub categories of filing. It then feels overwhelming.

Is yours strictly an emotional issue? You mention painful, is it a matter of needing more time to heal from a loss? Or does the volume feel overwhelming? Or not sure how to start? For me, I just had to stop overthinking it, and just dive in.

I did get to a point where I I was ready to toss without looking - my rationale was if I hadn't missed something by now, do I need it? But so glad I didn't. There were some gems in my parents paperwork: letters to my Dad during WWII, my parents house purchase for 4K, letters I wrote home during college, etc... Of course, most papers discarded, but the keepsakes in them were priceless.

I have those exact issues with organizing as well...and I think it's the volume of "stuff" and all the pictures (don't even get me thinking about scanning...yikes)...and my adult sons will want some of the stuff I'm sure (my mom's journals, letters when we lived in Afghanistan, etc). But it's also the "tchotchke" things that mean something to me (or at least I know what it is and the history) that are in a bookcase in a spare room....should I box those up? I don't see them, don't get enjoyment....arghhhh!!

Snoopy: "I wonder if you are dealing with a grieving process, whether loss of family members, friends, or even seeing pictures of you before MS entered your life. It's very easy to feel overwhelmed and even have difficulty dealing with memories, good and bad."

Snoopy, you are spot on as well...it is grieving; although the majority of the pictures are living people, there are losses. My neuro wants me to utilize a mindfulness type of assistance. She said set a timer for 20 minutes...and when you take a handful of pictures out, just acknowledge "okay, this is a picture of three people...place in this pile and move on to the next....okay, this is a picture of a cat...put in animal pile and move on" No overthinking allowed, no past allowed in....an objective to build the piles for a set time. To tell myself after the timer goes off, I can now take the time to go through a pile and allow feelings to flow...or not. She said I may want to set the timer again and put more pictures in piles--and do the grieving another day. I hope I'm explaining that in an understandable way!

Knowing I don't want to go the "live therapist" route, she suggested a book by David Burns, "Feeling Good Handbook". I'll give it a try, along with the mindfulness meditation...and the timer....and do a handful of papers/pictures at a time (not look at the full drawers). She also suggested a dvd that was recently on PBS (the marathon) called "Desert Dreams". Flute music, beautiful scenery--would be great to view/listen prior to going to bed.

Myoak, thank you for your kind words and the information. New Mexico is beautiful, and the International Balloon Fiesta is taking place....I have never gone (don't like large crowds), but am able to drive to an area and watch them ascend (weather permitting). The special shapes are incredible.

Gargantua: "It did not help that every single thing required a decision. What you’re doing is very rigorous work. So, there is a big existential component to what you’re doing, and the grief process does figure in. Perhaps the mental rigor is harder with your MS, but I would not assign a new special MS-related diagnosis to your experience here. Asking for some help with the chores could be a good start?"
Gargantua, I am so sorry for your loss. When my dad passed in 2000, I had to go to Oregon and make decisions very quickly and get back to my job and kids in New Mexico. It didn't help that I didn't have the time to grieve; my mom passed in 1997 and I was not able to go up there (my dad wanted to handle things privately, which I understood). So I was dealing with both of their passing and quick decisions, no time to grieve (I am an only child so inherited a lot of "stuff")....and returned to New Mexico and right back to my job and my boys. They are grown now and one lives in Arizona.

It's funny in a way; I saved 18 Xerox boxes from work; they are stacked neatly in the room I need to go through. When I worked, people would tease me for always taking those boxes home...they are good storage boxes! I had my handyman recently install industrial shelves in there, perfect for the boxes once they are full. No more of the "half empty boxes"....

You have all helped me gain clarity and I thank you for that!! My neuro said she didn't think it has to do with my MS, she said it's emotional, to take charge of the panic and to walk away when needed--but to "get back on that horse and let it know who is boss".

God bless you all; your replies meant a lot.

[SNOOPY]

Hi swpanther1.

What an insightful and helpful Neurologist you have...that one is a keeper

The Feeling Good handbook by David Burns is really very good, although it's a huge book. I read and used the book for several years, I bought it on the suggestion from my Psychiatrist/Therapist.

Stepping away when your timer goes off is an excellent idea and will help you to not be overwhelmed. It's okay to give in to your emotions, acknowledge them and the reasons for them. When you are feeling better don't dwell on it...just acknowledge. Meditation is something I am working on and is helpful. Just as a side note: I also use crystals, prayer and smudging (clearing and cleaning my space, my home, myself). This helps me but isn't necessarily everyone's cup of tea

Take care of yourself