Sunny and others,
Here's a good beginning for this question
I've heard several different sources try to explain why people with neurological problems have a hard time focusing on conversations in a crowded room. I think none of them really answer the problem, because it's a combination of factors.
A common cognitive problem in MS is the loss of multi-tasking. Another common problem is being easily distracted by outside stimuli. Another, perhaps related problem is that too much sensory input can cause my brain to shut down - if I'm going to function, I have to find someplace quiet to do it.
- Inability to focus on conversation in a crowded setting
It's as if the "Filter" has been lost. I've lamented the fact that I used to be able to sit in a room with 5 different things going on, participate in one, listen to two and ignore the other 2. Now, I have trouble concentrating on one and ignoring the rest. I haven't figured any way of making my brain work like it used to, But, you can figure ways to work around the problem. Have ppl communicate by email if possible, you can read it when you can concentrate, and more than once if you need to. Move important conversations to a place without the distractions. Don't be afraid to ask ppl to rewind and repeat themselves,
- Difficulty finding the correct words to use to appropriate express ourselves.
Make light of it. Joke about it. Don't stress about it. It'll come to you if you don't let the moment panic you. I've started repeatedly using the phrase "whoops... that train just left the track". Educate the ppl who are close to you. They'll help you cope.
- Affective disorder - as brought on by physical illness not psychological problems
- Significant behavior change - in particular mood swings
- Change in mannerisms - perticularly using facial expressions to express yourself.
Can't personally speak to the rest, hope someone else can.
If you have any online sources that you think we should look at, please include that as well.
I don't know of any online sources, but I just read a very helpful book. MENTAL SHARPENING STONES: Manage the Cognitive Challenges of Multiple Sclerosis by: Jeffrey N Gingold. It doesn't tell you how to make the cognitive difficulties go away, but, it does give numerous strategies to deal with them and keep life moving along smooth.
One example of this confusion thingy in a crowded room or area....
While shopping the other day at Wal-Mart, there were constant calls over the PA system, Christmas music was playing and the store was crowded with many people talking. I was so distracted and confused, I literally thought I was going mad. (crazy)
I could no longer shop and managed to find my way out of the store and back to my car. I was so upset by this confusion going on in my brain, that I left my cart where it stood and could not shop any further. I literally could not concentrate on what I was trying to shop for.
This kind of thing can be overwhelming and few people understand how maddening it can be for the person experiencing it. This is the third time since being diagnosed with MS over a decade ago, that I could not function at all. It was an extremely scary thing to have happen. I was alright once I sat in the car for about ten minutes to be able to "think" once again, where it was totally quiet. I did not, however, go back into the store and try to shop.
This was NOT an anxiety or panic attack, as my partner thought. This was mass confusion brought on by" information overload." My partner just did not understand when I told him that my 'brain' was totally confused. He was surprised to see how calm I was, when he came back to the car. To this day, I do not know how to explain to him that this can happen to people with neurological problems. In my case, MS.
Thanks Heather. That is a great example, though I am sorry it happened to you. We were looking for explanations and samples to share with family members who don't quite get it...... yours will be a good one to use.
I have difficulty with facial expressions, because my family has said they have difficult understanding why my face doesn’t match what I’m saying, and so here’s a website I’ve found that explains that a lesion in your brain, or neurological disorders can indeed affect this area of your body as well.
“In neurology, analysis of inappropriate facial expressions may provide evidence for the location and type of brain lesions. Brainstem damage may lead to emotional lability, as in pseudo-bulbar palsy. Changes of facial expression consistent with sadness, fear, surprise, etc. have also been described at the onset of seizures (Hurwitz et al., 1985), and outbursts of anger have been seen with brain lesions as well (Poeck, 1969; Reeves & Plum, 1969). Parkinson's disease, a disorder of the dopaminergic system, is associated with amimia, or reduction of spontaneous facial activity (Buck & Duffy, 1980), including a decreased eye blink rate; but subcortical lesions may also lead to increased facial activity, as in Meige's disease or Brueghel's syndrome, thought to result from a disorder of the basal ganglia.
Cortical lesions also influence expression. Lesions of the supplementary motor area (medial part of the frontal lobe) lead to contralateral facial paresis, with spontaneous emotional expression more affected than voluntary; lesions of the motor cortex (also with contralateral facial hemiparesis) affect voluntary movements but leave intact spontaneous smiling (Monrad-Krohn, 1924). Frontal lobe lesions lead to fewer spontaneous expressions of brow raising, smiling, lip tightening, tongue protrusion, etc. during neuropsychological testing of brain injured subjects than parietal or temporal lesions (Kolb & Milner, 1981), though the role of motor versus cognitive or emotional contributions has not been sorted out.
http:// face-and-emotion.com/ dataface/nsfrept/benefits. Html
Also, I have trouble with dysarthia, in which the capability to understand, remember words and construct sentences is not lost but the ability to speak clearly becomes affected. And dysphasia, in which there is a lack of understanding of what is being said and an inability to recall the vocabulary and grammar necessary to build a sentence and the annoyance of losing a word mid-sentence.
Here is a good website that helps people understand how this affects you in life (it’s a bit complicated, any better ones would be great!!) Take out the spaces..
http: // www. patient.co.uk/ showdoc /40000746/
http:// www. nlm.nih.gov/ medlineplus/ ency/article/003204. htm
I have trouble hearing in noisy environments, and I also have trouble understanding the meaning of the words that are spoken to me… I hear you but I do not comprehend. I think this falls under Central Auditory Processing Disorders which may be either congenital or caused by These can be caused by trauma, tumors, degenerative disorders, viral infections, surgical compromise, lead poisoning, lack of oxygen, auditory deprivation, and so forth. … and which cover
1. Difficulty hearing in noisy situations
2. Difficulty following long conversations
3. Difficulty hearing conversations on the telephone
4. Difficulty learning a foreign language or challenging vocabulary words
5. Difficulty remembering spoken information (i.e., auditory memory deficits)
6. Difficulty taking notes
7. Difficulty maintaining focus on an activity if other sounds are present child is easily distracted by other sounds in the environment
8. Difficulty with organizational skills
9. Difficulty following multi-step directions
10. Difficulty in directing, sustaining, or dividing attention
11. Difficulty with reading and/or spelling
12. Difficulty processing nonverbal information (e.g., lack of music appreciation)
Here is a wonderful link on this
http:// www. tsbvi. edu/ Outreach/seehear/spring00/centralauditory. htm
Great job on the research! Well done. - Lu
I started to write my comments on this about an hour ago, when my @#$#$ computer did a big hiccup and froze. Now when I've read what other folks have said in the meantime, I'm not sure I'm answering this in the way that was requested. Also, although I have read lots about this on the Internet, I have no citations ready. So with those big grains of salt, here goes:
The way I understand it, problems with thinking, speaking, emotions and behavior are the direct result of lesions in the parts of the brain that control these functions. Consider someone who has a traumatic brain injury and who subsequently laughs and cries inappropriately, and makes remarks that a normal adult would not allow herself to make. We know that this person cannot help these responses. Cause and effect are clear. While MSers will never have such extreme injuries (thank heavens), much more subtle and far less obvious damage may occur. If we have such problems we often seem to learn to compensate somehow, and people here make many good suggestions along these lines.
Our brains are also far more resilient than those of victims of widespread trauma, so new nerve pathways can develop, and old lesions can heal considerably. Instead of beating up on ourselves because we can't cope, we should congratulate ourselves and each other for doing as well as we do.
So there! That's my theory and I'm stickin' to it!
I feel as if I have another unique brain in my body. As I realize now that I have some extra body parts I have been laughing with my neuros receptionist and telling her that my physical and cognitive problems are the result of this "evil" twin trying to grow and emerge. I know that this is somewhat of a sick joke--but what the hey--I did not ask for this disease.
Funny thing is. When I was little I knew of very little of diseases. Somehow I knew of the physical problems of MS. Perhaps through Annette Funicello (sorry, if I misspelled the name). So, I would thank God for my good health and to, please, do not give me anything that would disable me from carrying my load for myself and my family in the future. This is all so strange to now be diagnosed with MS. I kind of feel like when those people say that they know certain things about themselves from early on. I hope I did not subconsciously wish this upon myself. I never really thought about it much...just thankful to God that I was so very healthy and active and did not have a dreaded disease and have to suffer like so many many people in the world. I guess MS was just one of the few disease names that I knew. The irony is just so strange.
I called the family to inform them that there was possibly ice on the way (in case someone was out shopping with their little kids or something--which they were). I was told by the one answering the phone that they are not ten years old. The weather was fine at the time--just cold. They were out having entertainment. I did not want them to get caught in an ice storm.
I wanted to go to bed in peace. I was really ill with migraine: nausea, vomiting, diarrhea, the photophobia, phonophobia, ear-ringing, etc. The ER was booked. I just
wanted to be sure that they were safe. I get in so much pain anymore that I wanted it all to end. I told the other party I was not sure that they had heard the revised weather report; and that I was ill and planning to go to bed. I was hurting so badly. They told me that if I was hurting so badly that I wanted it all to end that I may as well commit suicide. A logical response to my thoughts, I suppose. But, I am rational enough to know that with tomorrow there sometimes comes relief. I just wish that I had someone who could retrieve me from the ER, etc.
I wish someone in my family would understand instead of belittle my illness. There just does not seem to be ANY understanding or support.
The next day someone called. My phone was acting-up and did not ring. I called them back to acknowledge their message that they left. They basically told me on the machine when I did not answer the phone that they guessed that I either fell down on the black ice or had an MS convulsion and just laughed.
I want to think that they were trying to be funny. But, after they kept criticizing me when I was trying to talk for taking too long to explain myself (or find the right words) I was getting a little frustrated.
Any show of emotion or delay in trying to say what I want and I get laughed at. If I get upset with their distress "at all" then I am having an MS 'fit'. I am being punished for having this disease. I am so glad to have all of you.
My neuro said that I am lucky to have done so well as I have with my problems. He told me that is would seem that I have had a mild case until this last years and wanted to know that I have done to hold-up so well as this could be a very serious case with it being where it is in my spine and my other health problems. He reviewed my other records and acknowledged that my migraines must be really bad. I had been getting followed and warned about possible stroke and losing my vision. I try not to dwell on my illness and at least do my business. I just cannot do it like I used to. And it takes so well to recuperate compared to the past. I am still being watched for possible neurological cancer. So far the Devic's test has been normal--yeah!
I went to a celebration and charitable function at the church that evening. Then, I was criticized because I did not make it to church for the special AM celebration that morning. I explained that I had "truly" been sick with migraine. I was told that I look healthy enough and that my health should be no excuse. I explained that I vomited and had even more problems after taking my maxalt and phenergan without relief; followed by vicodin as recommended by the doctor; and self-administered toradol earlier before I came. I could not get the vomiting and pain to decrease until after the toradol and some zofran--and that I still had "symptoms" but nothing of the amount at that point that I have not learned to live with every day. Then I was told that that was my problem. That I take too many meds. That lady said that when she's sick in the morning that she just takes her emetrol (or some other OTC) and gets her butt out of bed and goes to church or her charitable functions--every Sunday. She asked the others--isn't that right? The lady next to her responded that she does go to church every Sunday.
I have done lots and lots of charitable work. I have tried to be a good citizen and mother and family member and I have helped saved other people's lives. Why can't I and others just be accepted without such criticism? Are many of your families in denial about your MS? Other people that I had worked with encouraged me at the beginning telling me that it is no big deal now that they have the shots that you simple take once a week. If I have a simple whole body jerk or tremor--they state that they cannot be seriour friends with me like before. I guess it scares or worries them--even when I simply ignore it or laugh about it. I think I have found some really funny jokes about it. But, they run to the hills. How do some of you keep your family involved and caring; or at least concerned enough to try to understand a little of your illness so that they do not make fun of you. I understand that making fun can be a coping mechanism. But, I do not think that that is what is going on. I feel as if people are being a little noncompassionate or misguided.
I guess I will just keep trying until I find someone-somewhere.
Thanks for the ear.
I have to go.
Blessing to all of you,
Wow I am exhausted from reading your post. You seem to have so much negative emotion and or people around you. I was just feeling sorry for myself because my son came home from College today and within minutes I was dumping me problems on him. Ironically one of my topics was that I am convinced that I have gone from RRMS to SPMS.
Any way, I just wanted to ask if you see a neuropsycholigist? I have been because of my terrible cognitive issues. She explained to me that part of my brain that is damaged (I can't remember which) causes me to have serious problems understanding what people truly mean. In other words, I feel like they are not understanding me or picking on me or they feel completely different than they do.
I'm not saying that people don't make jokes at my expense - they do, but I have to remember that their brains and mine no longer work the same. My feelings get hurt in conversations still but at least sometimes I am able to catch myself before I feel as though they are all ---holes and remind myself that this could be a case of me misinterpreting the conversation. Something to think about.
I hope that you find peace. Something good is already happening for you - you have bunches of people right hear that DO UNDERSTAND.
Wow! I hadn't thought of Annette Funicello in years - seeing that name brought back a "oh yeah, she has MS" memory. Thanks for that memory.
I hope you will consider Erin's suggestion - it wouldn't hurt to be checked out.
As for the negativity around you, you can't divorce your family easily, but you can look for new friends and new social outlets. Perhaps a different church? Begin anew with different relationships maybe?
I'm glad you are comfortable here to vent and speak your mind - it does sound like you are in a real pressure cooker situation. You may want to start new discussions so everyone is sure to see it and have a chance to respond and give you support. Being on the end of this post it may be overlooked.
Be well and stay in touch, Lulu