MS Mental Problems

[1eye]

I have started an essay on mental problems which a person with MS might encounter. I wonder what others in this forum might think of it...

MS Mental Problems


I have MS.

I have been in denial about it, resisting the tendency to think and talk about my disease, because if I think and talk about it too much, I become boring to listen to.

People will think, sometimes rightly, that I am obsessed by my disease. But if they understand what is happening to me, that understanding will help them cope with this tendency I now have, to get stuck in a mental rut, to become seemingly obsessed. That tendency is also part of this disease. It is hard for people to understand. Understanding is a key to coping with this disease, both for sufferers and people living with sufferers, so please try.

Please understand, I am not obsessed by it right now. Right now I am trying to explain this disease to other people, so that they can avoid misinterpreting the traps and knots the MS sufferers’ brains lead them into, as somehow deliberate. Deliberation itself can be slower, or broken, because of this disease. But remember we are losing function, and none of that loss is deliberate, even though it sometimes can seem as if it is.

The easiest way to think about it is that I have brain damage which is general, random, and is becoming progressively worse. At the same time, as I become older, I am experiencing the same deterioration of function with age, as anyone does. That deterioration may or may not add to the other damage, also randomly.

That means a world of problems, which are different from the problems someone else has, from their MS. That is because my brain’s functions are located in different places, different mental pathways, a unique set of neurons, than those in someone else’s brain, whether or not they also have MS.

It’s sort of like being blind, and having furniture that can sometimes move itself to a different place in your room. It affects that conglomeration of functions and behaviours that people know of as my personality. But remember that this personality is located somewhere, (which may be different from where it lives in someone else’s brain).

Handedness

This business of “handedness” (right brain hemisphere versus left, right eye versus left, right arm, hand, leg, foot, etc.) is one of the hallmarks of this disease. Most of my brain’s problems are in the right hemisphere. Because for some reason nerves have a right/left crossover, that means my physical problems are mainly on the left side of my body. It also means any physical functions which are not bilaterally symmetrical, have problems on the left.

An example of that is my heart, which is on my left side. My lower colon is also largely on my left. So I have problems with those. Every part of my body is felt by, and controlled by, my brain. I think the handedness of my problems even extends to the two sides of my heart, so I would guess the two sides of my heart are controlled by different sides of my brain. It is only a guess.

But the functions of the brain are known to be “handed”, and the two brain hemispheres are usually used for entirely different sets of things. That is why I am still good at organization, for instance. If you read Dr. Oliver Sacks’ book, The Man Who Mistook His Wife For A Hat, you will know that right-brain problems are an entirely different, and more mysterious, set than left-brain ones.

See https://en.wikipedia.org/wiki/Oliver_Sacks.

I have relatively few left brain problems. In the book, My Stroke of Insight, A Brain Scientist's Personal Journey, by Dr. Jill Bolte Taylor, we find some of the differences between the functions of the brain’s two sides. She had a left-brain stroke. My problems are mainly in my right brain, so they are the inverse, functions that she had to re-learn. You might say that if you put her left-stroke-damaged brain together with my right-MS-damaged brain, you might have a whole person.

See https://en.wikipedia.org/wiki/Jill_Bolte_Taylor.

She has given a TED talk which you might find insightful: https://www.ted.com/talks/jill_bolte_ta ... #t-1102369.

So I have relatively few problems with language, numbers, organization, and other left-brain functions.

The left side of your brain controls the muscles on the right side of your body, and it is responsible for language along with logical and mathematical thinking. Meanwhile, the right brain controls the muscles on the left side of your body, and it is associated with spatial reasoning and musical abilities. (https://www.reference.com/science/left- ... rQuestions)

That is interesting to me because I am a musician, and my MS damage is greater on the right side of my brain. Walking and music are both uphill battles for me, and language, logic, and math are not. I exercise regularly and play the piano by ear. Someone with MS damage on the left side of their brain has an entirely different set of problems with which I am completely unfamiliar. But some MS difficulties are common, because they exist on both sides of the brain.

The Right Side’s Connected To The Left Side

MS trouble may be mainly one-sided, but there are two-sided functions that are also damaged. The two hemispheres of the brain are connected by a bundle of 300 million nerve fibres. This bundle is called the Corpus Callosum. Unfortunately, this structure is typically atrophied, in MS. That means functions requiring left/right co-ordination are affected. Walking and piano playing are two of these. Playing catch is another.

Getting Slower

My functions which are affected by my MS include my speed of processing information. That is similar to my reaction time, in that any reaction to information I am processing also takes longer. It is not the same as, say, the time it takes me to react to a starting pistol, and start running. It is similar, in that my reaction to information does involve my time to process a sound, and start moving.

A sound I hear is not usually a starting gun. More usually, it will be language, a complicated sentence which must be at least superficially, or more thoroughly, understood, in some more or less deep part of my brain. That sentence may be a statement, or a question. If it is a question, I must not just take the speaker’s words in, but formulate an appropriate answer.

That formulation of an answer, or the beginning of a response, may take longer than it would for an undamaged brain. Even if the response is just an automatic one, like “uh-huh”, it will take longer than the other person might expect.

It will take even longer, if it involves a bit of thought, like “Yes, I am thirsty.” It will be longer still, if it involves a decision, like “Yes I’d like some ice cream.” It will be longer still, the more complex the statement or question is.

Even after a response has been formulated, speaking cannot begin until, like beginning to run after a starting shot, I have activated my tongue, vocal cords, and lungs to speak my response. That activation, with my MS damage, takes longer than it would for an undamaged brain.

Sometimes I may be distracted by something else I was trying to concentrate on, so I cannot muster the resources to respond quickly, and I know the other person has probably given up waiting by the time I am ready to respond. So it appears I have no answer, even when normal politeness requires it. That can be a problem which makes me seem “slow” or unresponsive.

The more tired I am, the more likely this problem will occur. That is par for the course, with MS. But only someone very familiar with MS may know that. The usual thought is that I am mentally “slow”.

The more MS damage I accumulate, the slower I seem, to an ordinary person.

That's all I have so far. I would like to hear other people's opinions, suggestions, criticisms, etc.

[Scott1]

Hi,

I think you're writing something worthwhile.

Perhaps you could talk a little about how that damage can extend into the spine, particularly the top section. Demyelination of sections of the spine can impact of the delivery of signals to and from the brain and the organs and limbs of the body. e.g. I have some deep cavitation and necrosis on C7 and that affects the sensations in the same parts of both hands. Both sides feel the same way at the same time because of that.

It's important we try to convey life with MS to people who can't understand it. Most people don't want to know so we have to be gentle with them.

Regards,

[1eye]

Definitely. I have not heard of that problem before. Like some corpus callosum problems, and probably many spinal ones can also be, it is bilateral.

[jimmylegs]

i'm running through definitions of terms over here, and wondering if you have found any kind of framework that examines a wide array of mental health issues, from physical injury through chemical imbalance etc.

could be interesting to see how your range of xp (and those of other patients), from physical thru cognitive thru emotional limitations, fit into such a system.

as of right now, i tend to think that most ppl when they use the phrase 'mental health' would understand it to refer to the range of issues addressed in the latest DSM, eg
https://en.wikipedia.org/wiki/DSM-5#Sec ... _and_codes

without digging in too deeply, i am not sure whether or how everything you're talking about above fits into that system.

[ElliotB]

" I am trying to explain this disease to other people"

I don't know if it is possible without a common frame of reference. 'Normal' MS free people simply cannot fully comprehend what we are going through, especially mentally.

[1eye]

" I am trying to explain this disease to other people"

I don't know if it is possible without a common frame of reference. 'Normal' MS free people simply cannot fully comprehend what we are going through, especially mentally.

I think it would be good if it were possible.

We have to start somewhere. I personally need certain important people in my life to be able to understand me and my disability.

When I was still driving, I went to a self-help group meeting. Eventually I started to take my wife to these meetings. I realized we needed at least one ‘adult’ in the room, someone who isn’t clinically depressed, or it is a case of the blind leading the blind. Clinically depressed myself, I knew how hard it is to tell someone ‘normal’ about it. We did have a group ‘leader’ of sorts, who also of course was clinically depressed. She called everyone and tried to keep things regular. The number of attendees dropped off, and if there are any meetings now, they are very small, if there are meetings at all. It’s kind of sad, because we inevitably come around to facing the death of a member.

Christmas time we sometimes have had a party. These are more pleasant, because we imbibe. I have brought plates of pot brownies (with warning signs on them). In spite of knowing what’s in them, everyone (without exception) eats them, and some take them home with them. There are never any left. The little old ladies are the most avid fans.

We need a facilitator. My wife is not one. A reference book would be nice for someone who is trying hard to be a facilitator for such meetings, but there isn’t anyone around these parts who has funding for such a thing. Unless there can be such funding, it won’t happen.

I do know one such individual. I met her at that meeting. She is the only person with MS who I know who I would say is not clinically depressed, who has the energy to do that work. She has MS, and juvenile (type I) diabetes. She controls it with a pump. Once every hundred days or so, she and I get together for a ‘cook’, and do our do-it-yourself biotin compounding/capsule manufacturing.

She is also the only person I know with MS who has a full-time paying job. She facilitates for groups of kindergarten kids, doing crafts and such. I know some mothers do this, and I used to myself, at my kids’ “play group”. I would not have such energy now.

I think it is time for such a thing to exist. I know that we are not ‘normal’, but I think there are people who have enough empathy, knowledge, and who do not have the disease themselves, to make it happen. Some of them may be lurking in this forum. It does not have to be a formal reference work. I would be happy if it just existed.

BTW this may be OT, but the links which are published by ‘MSUK’ are everywhere. They are used by the software that gives you ‘further reading’. But none of them point exactly to the papers that are referenced in the titles of these postings. So they become stale right away, if all you can see by clicking on them is the latest ‘MSUK’ has published. It would be nice if they pointed directly to the specific papers they are about, which do not stay long at the top of the stack.

[1eye]

i'm running through definitions of terms over here, and wondering if you have found any kind of framework that examines a wide array of mental health issues, from physical injury through chemical imbalance etc.

could be interesting to see how your range of xp (and those of other patients), from physical thru cognitive thru emotional limitations, fit into such a system.

as of right now, i tend to think that most ppl when they use the phrase 'mental health' would understand it to refer to the range of issues addressed in the latest DSM, eg
https://en.wikipedia.org/wiki/DSM-5#Sec ... _and_codes

without digging in too deeply, i am not sure whether or how everything you're talking about above fits into that system.

Me neither. My wife is a librarian, and between her and Wikipedia I found what a DSM is. Certainly there would have to be much more than what I have written, but don't you think it would be nice if you could just find it on Wikipedia?

[jimmylegs]

could be interesting if you were able to cross reference your xp against the dsm categories given in the link above as a bit of a starting point for some of your writing, perhaps it will be useful for organization. i am curious to see which pieces if any do not fit, and where any such leftover pieces might belong in other potentially existing frameworks.

once it's all organized, perhaps you will draft the forthcoming wikipedia entry (including links, naturally, to any related entries found elsewhere on wikipedia!)