Traumatic Brain Injury (TBI)

Each year in the US there are approximately 10,400 new cases of Multiple Sclerosis, 11,000 spinal cord injuries, 43,681 new cases of HIV/AIDS, and 176,300 new cases of Breast Cancer.

In the same year there are 1.5 million Traumatic Brain Injuries. More than 50,000 of these are fatal.




But there are no telethons, bikeathons or walkathons for TBI. Celebrities don't wear colored ribbons on their lapels for TBI. In fact, you may never have heard of TBI before this post.

The fact is, TBI can happen to anyone, at any time. It doesn't discriminate based on genetic risk factors or environmental hazards. While certain lifestyle/health factors can increase the risk of TBI (such as excessive drinking, engagement in risky behaviors and certain mental illnesses), for the most part TBI is an "equal opportunity" concern. It can be as simple as getting in a car accident, or falling down the stairs.

TBI can result in a variety of after effects including cognitive deficits, mental illness, personality changes, behavioral changes and physical disabilities. An individual may suffer disabilities ranging from mild to severe, and they may be temporary or permanent. Rehabilitation is necessary, can be costly and often must be long-term.


For more information on TBI:

Brain Injury Association Of America

which morphed into MS in about 1988 and measles encephalitis I had in 1956. Too many Doctors treat people with brain injuries as second class patients. They look for mental problems as solutions to all medical problems and treat people disrespectfully (oh the horror stories I have heard of the last last 13 years added to my own since 1975).

All it takes for me to quickly lose start losing IQ points is heat (above 86 degrees on sunny days). I was voted "most likely to cure cancer in high school". When I get to hot I can't manage to write out a check and I have to look up my pin number to use my Debit card.

And you would be amazed how often TBI goes untreated or undertreated. Sometimes the problem is misdiagnosis, as you pointed out. People with TBI can present with psychiatric disorders and end up in the mental health system, but their MI is not the primary problem.

Stigma is still a significant problem faced by people with TBI (and really any disorder that affects mental functioning). Lay people and even professionals don't understand, or don't want to be bothered with making accomodations or providing the assistance needed by afflicted individuals. Go into any ER or medical office and you will often see a very different reaction from staff when the patient has a "mental disorder" than when they are "normal". Getting such reactions from the general public is bad enough, but educated professionals, one would think, would know better.

Due to a gunshot wound to right side of head. He displays symptoms of a stroke patient now--left side hemiplegia with blindness and hearing loss and the loss of mobility in left arm/leg. There are groups in our community that help/assist and give out info on the subject.

It's really pretty devastating for the patient/individual.

They may never regain their pre-incident level of functioning. In some cases they may have normal or near normal cognitive abilities and remember their former level of functioning and be very frustrated with their current disability. Cognitive disabilities can also be a source of significant distress as they can prevent people from getting adequate employment or any employment at all. Depression is common in people with TBI.

Community resources are very important, be they friends and family, funding resources, support groups, physical/occupational therapists, job coaches, employers, mental health specialists, spiritual groups, etc. Maintaining connections and developing a network is essential for a person with TBI.

Because of TBI, my guy has struggled more than anyone I know. It's sad on one hand, yet he perserveres.

He is unemployable BUT he has done fantastic volunteer work in the disabled community here for many years. He gravitates to other injured people; his heart is softened towards them.

While I'm no longer engaged in religious activities, my guy clings to spiritual things. Just the other day he almost had a melt down because he sees what his "spiritual/religious" associations were bringing about via the GOP. It never occured to me that he would feel SO lost without his spiritual connections. I tried to counsel him in terms that there were other spiritual/religious groups who DO NOT subscribe to the RW Fundie brand of christianity/spirituality. That seemed to help him more than I expected.

He has terrible short term memory loss. He also has a good sense of humor. So, when I'd send him to the store in his wheelchair (he loves to go out and about), I would polaroid an item I wanted him to buy...he had/has difficulty remembering (or reading labels of) the exact items he's suppose to get. Fortunately, we can laugh together over his adventures in shopping.

He HATES it when I rearrange the living room et al. Apparently he needs things to be static...He's gotten temporarily "lost" on a familiar street wherein he'd have a mini panick attack.

He is devasted by the loss of his "masculinity" and his mobility. He suffers some pretty deep depressions and mood swings.

It's been a trememdous struggle for him and for the family.

I think your guy is doing a good thing, both for himself and for others with disabilities. I've been a member of numerous message boards and one time a guy posted that he had various mental illnesses and volunteered with people who had mental health problems. Another poster quipped "Isn't that like the blind leading the blind?". His reply and mine set the guy straight. In some cases people who have actual life experience with an issue are the best ones to be working with people who have "special needs". This is the case whether those needs are physical disabilities, mental illness, substance abuse problems, homelessness or whatever. After all, who is a service recipient going to feel more comfortable talking to, a book-educated "professional" or someone who actually knows what it is like to be them?

Assisting people, particularly people who share your needs and concerns, is also incredibly therapeutic. Just knowing you are being of assistance to others makes you feel good about yourself. Furthermore, in helping disabled people become more independent a person who also has limitations can increase his/her own independence, community networks and supports, and self-esteem.

Remind your guy not to confuse spirituality/religion with the GOPs freaky fundamentalism. There are plenty of Christians who are not of the Shrub/Falwell/Dobson ilk :puke:. It is sad that those wingnuts have given Christianity such a bad name that even Christians hate themselves.

The polaroids for shopping purposes are a great idea. When my developmentally disabled or TBI clients need to shop we'll use photos (or for a low-tech ultra cheap method just cut pics out of a sale ad). Writing down the # of the aisle that the item is in can be helpful as well (assuming that he shops in the same store every time). Just hope they don't go and rearrange the store on him
;(

Frequent change (or even infrequent change) is often a problem for people with TBI (or Autism or mental retardation). Even simple changes can confuse and frustrate them, as their brains lack the ability to adapt as an un-injured brain. Routine and consistency can be crucial, albeit boring for people they live with.

Depression is very common in people with TBI (6-77%). It is important for people to have access to treatment, be it counseling, medication, support groups, spiritual groups or some combination of methods.

Best wishes to you and your guy
With metta
:pals:

BTW, I also hate it when the stores go rearranging or discontinuing their merchandise. x( lol

Best to you as well...

:hug: