KosAbility is a community diary series that is posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
This weeks author is BFSkinner.
I am honored to be part of this series and being asked to kick off the first in the series. As some of you might know I’ve been diagnosed with vascular dementia I am 40 years old, and in 2005 was diagnosed with lupus which was what started the whole process for me.
Most of the problems that I have had as a result of the lupus have been cognitive. It has led to viral meningitis, seizure disorder and paranoia. Things have gotten worse over time since my diagnosis in 2005. An earlier PET Scan showed that my parietal lobes were not performing as they should.
As a result of the worsening conditions and the PET results I was given a brain biopsy that found scaring in the arachnoid matter of my brain. The arachnoid matter is the middle layer of the membrane that surrounds and protects your brain. While in the hospital after the biopsy as a result of results, symptoms and neurological testing it was felt I could benefit from speech, occupational, and physical therapy, which is what this diary will focus in on. I need to emphasize that no two people have the same therapies. What I have experienced in therapy in no way should be seen as what others have nor will have. However as there is not a lot out there about what the role of therapy is, I felt it might be good to talk about. I am very lucky in that I go to therapy at the best institute in America, the Rehabilitation Institute of Chicago two days a week, 7 hours a day.
The number of times, the length of time, and the type of therapy a person goes to is due to many factors, your condition, its severity, insurance available (Some people get covered by Workmans comp, others by private insurance, and others by Medicaid). All of these factors are looked into and a therapy plan is developed.
Generally speaking the three main types of therapy are physical, occupational and speech therapy.
A physical therapist can help you achieve and maintain mobility and quality of life without surgery or prescription medication, in many cases. With their extensive education, physical therapists help you move forward so that you can get back to daily living.
A physical therapist can help you achieve and maintain mobility and quality of life without surgery or prescription medication, in many cases. With their extensive education, physical therapists help you move forward so that you can get back to daily living.
Occupational therapy is a science-driven, evidence-based profession that enables people of all ages to live life to its fullest by helping them promote health and prevent—or live better with—illness, injury or disability.Occupational therapy is a science-driven, evidence-based profession that enables people of all ages to live life to its fullest by helping them promote health and prevent—or live better with—illness, injury or disability.
Speech Therapy focuses on receptive language, or the ability to understand words spoken to you, and expressive language, or the ability to use words to express yourself. It also deals with the mechanics of producing words, such as articulation, pitch, fluency, and volume. Adults may need speech therapy after a stroke or traumatic accident that changes their ability to use language
Speech Therapy focuses on receptive language, or the ability to understand words spoken to you, and expressive language, or the ability to use words to express yourself. It also deals with the mechanics of producing words, such as articulation, pitch, fluency, and volume. Adults may need speech therapy after a stroke or traumatic accident that changes their ability to use language
For me, I get two sessions each day of therapy for each type. I hate PT on the one hand because for me it is the toughest, but at the same time I am very glad I get it since I know I need it. As a psychologist my favorite therapy is speech, since speech therapy focuses in on cognition and memory and not just speech. It is what I know the most about and it is also the key ‘area’ of my problems.
Each day I go into therapy there are about 10 to 15 other patients. Sometimes I work alone and other times I work in groups. I’d say the vast majority of the time I work on stuff by myself, but there are times when 2 or 3 people are all working on OT, ST or PT with me. Some people there are older then me, others younger. Some are there as a result of strokes, others by work related accidents, and others as a result of various conditions. For example I’ve friends who were injured as a result of H1N1, another is a policeman injured by someone he was questioning, and others who had strokes and are relearning many tasks. So each person there will have different goals and a different focus, I will only speak about what activities I have.
I have only small problems with old memories and learning, but large problems in taking in new information, both physical and non-physical.
For me, occupational therapy focuses on endurance and strength in the upper extremities. I work on increasing the strength of my whole upper body as well as how long I can keep going. A lot of emphasis is put on learning new motor skills. I guess even though I do not dance at all, the best example I could come up with for these is to focus in on dance.
For example if I knew how to dance before, I could still do those dances just not as well, nor as much as I did before. However I would have huge problems in learning new dances. So, for example, I have big problems in learning new moves, the balance required for these old and new moves, and being able to dance as long as I could.
Physical therapy focuses on almost the same thing as OT does, but for the lower extremities. I do a lot of stuff on balance as my balance is way off, so I stand on a lot of different surfaces and try to stay balanced without falling down. I have to multi-task by walking while bouncing a ball or balancing something when walking. I also stand still, eyes closed, to see how long I can ‘stand’ without falling. All of this goes on as they try to build up the strength in my legs.
In speech therapy I have a focus in on short term memory and initiation. Memory is made up of getting stuff into short term memory and then moving it into long term memory. The problems I have are more in getting stuff into short term memory. Once it is there I can put it into Long term memory and get stuff out of long term memory, the problem is getting the stuff into STM. So they’re teaching me ways to attend to stuff, avoid distractions, circle words that are the main points of what I am reading and summarizing a paragraph at a time so I can better put it into STM and then LTM. At the same time I have a problem with initiation or actually "starting" things. It is not a question of motivation or knowing what I want to do it is a problem in getting started doing it. ST helps with all of these things.
So for me, I get OT, ST and PT. I do notice differences since when I started. Stuff I could do well before therapy I can still do well. Stuff I could not do at all before therapy I still cannot do. But stuff I was having major problems with before that I could still do with enough work, have gotten easier. Therapy is not a solution for any and all problems, it is no panacea, but it does help a lot.