Tag Archives: Rehabilitation

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
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Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

R – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, day 18. Today’s letter is R. Enjoy.

Recovery

Recovery is the patient-led process of learning to live a fulfilling life with or beyond one’s mental illness. It may mean overcoming one’s mental health problems, but recovery is also for people with lifelong mental illness. It is related to rehabilitation, which I’ll discuss below, but recovery is led by patients.

Like I said when discussing experience and jobs, I have participated in a recovery group. In these groups, people discuss different topics related to getting their lives on track. For example, we discuss sources of support, pitfalls in our recovery, our relation with our treatment providers, etc.

Rehabilitation

Rehablitation is the staff-led process of helping patients live a meaningful life with or beyond their mental illness. Rehabilitation has the patients’ wishes in mind but still is led by staff. It is a common belief, and I’m not entirely sure whether this is correct or not, tht rehabilitation is linked to resocialization, which I’ll discuss hereafter. As such, a patient’s wishes might only be the focus of staff support if they flow towards independence.

Resocialization

Resocialization is the process of going back to a less restrictive treatment setting or back into the community after institutional treatment. It may also refer to independence-focused training in general. Resocialization units in psychiatric hospitals usually allow patients to stay there for a specific time period, usually two years. Rehabilitation units in long-term care may be focused on further independence too, but they have more flexible guidelines on how long a person can stay there.

Restraint

Restraint is the physical, mechanical or chemical restriction of a person’s movement. Holding someone down or tying someone onto a bed are often recognized as restraint, but giving a person a high dose of an antipsychotic or benzodiazepine to tranquilize them is a form of restraint too. Restraint, like seclusion, can only be used to avert the patient being a danger to themself or others. In the Netherlands, mechanical restriants are hardly ever used in psychiatric hospitals. They were up till recently commonly used in nursing homes on patients with dementia who run a risk of falling, but I believe regulations have changed on this. Chemical restraints are still used, though not as often here as in other countries.

Milestones in My Mental Health Recovery

This week #theprompt celebrates its 100th edition. I was guessing at the prompt for this week, as I often do, and this time, I was right: milestone. There are many milestones in one’s life. Birthdays, particularly important ones like eighteen or thirty. Graduations, be it from preschool, high school or college. Getting married, the birth of a child or grandchild, and the list goes on. When I thought of the word “milestone”, however, I thought of the milestones in my recovery from mental health problems. I am going to share them here. I include steps I’ve taken in my journey with autism here too.

1. Realizing I have a problem. In a way, I was always aware of my being different, but I didn’t realize there might be somethng really, clinically “wrong” with me till I was fifteen. Then I realized I may be autstic. Or something else. I quickly developed quite the obession with about half of the DSM-IV. Then, when I was seventeen, my parents talked me out of thinking I was autistic or otherwise anything other than blind and extremely intelligent and oh maybe a hypochondraic. Never mind that hypochondriasis is a real mental illness.

2. Admitting I need help. I first admitted this the day after I decided I might be autistic, so when I was still fifteen. Then again, I was too shy to tell my parents or my teacher or basically anyone that I really needed more than a teacher with a social skills checklist telling me all that I was lacking in terms of social skills. I remained too shy to directly ask for help for years. They were other people asking for help for me. First, it was the teachr with the social skills checklist calling the blindness rehabilitation center for me. Then it was my staff at independence training calling mental health services. Then it was the police calling the crisis service after I’d made a suicidal threat in public. I still have a problem asking for help directly.

3. Starting counseling. My first experience with counseling was at the blindness rehabilitation center I went to after high school. That wasn’t all that successful. Then, at the mental health agency where I was diagnosed with autism in 2007, I started sessions with a community psychiatric nurse. This was quite helpful. It was probably my most successful counseling experience so far.

4. Starting medication. I first started medication in the summer of 2007. That wasn’t a success. I hadn’t expected the psychiatrist I saw to suggest I go on an antipsychotic, because the nurse I mentioned above was suggesting a benzodiazepine on an as-needed basis. I did end up taking said antipsychotic, but stopped taking it again several months later. The second time I went on medication, another antipsychotic this time, I was extensively educated and got plenty of time to think it through and make a decision. I consciously decided I wanted this medication and it’s been a great help (with an antidepressant and several PRN meds added later on).

5. Checking myself into a mental hospital. Of course, it wasn’t literally that I checked myself in. I didn’t take the initiative to call the crisis service or my treatment provider, which I didn’t even have at the time. After all, I’d moved a few months prior and the new mental health agency was doing the diagnostic testing all over again. Nonetheless, I consider it a major milestone that I agreed to be admitted into the psychiatric hospital.

6. Moving to a resocialization unit. I spent sixteen months on a locked unit, largely because my meltdowns and emotional outbursts were too severe for any less restrictive unit to want me. Finally, however, the resocialization unit did want me after I half lied myself into being accepted. I think this was a major step, as I got much better care on the resocalization unit than on the locked unit. After spending over four years there, I moved to my current unit, which is also rehabilitaiton-oriented but doesn’t have as strict guidelines on how long you can be here. Not that they were followed by the other unit either. I really went here to be closer to my husband, whicch I currently am not anymore since the move, but oh well.

7. Discharge. This milestone is to come this summer. I’m going to move out of the psychiatric instituttion and live with my husband. I’ll continue to get some form of psychiatric treatment, but of course this is a step towards recovery of a “normal” life.

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First Steps Towards Independence: Blindness Rehabilitation in 2005

This week on the spin cycle, we’re discussing firsts. Last Friday, I visited a woman I first met at the blindness rehabilitation center in 2005. Another guy we both met there too also came over. This was my first time meeting them since I graduated from the rehabilitation center.

The rehabilitation center experience was quite interesting. I had just graduated from high school two months earlier and didn’t want to go straight to university. So in order to have some practice on my first steps towards independence, I became a resident there four to five days a week for four months.

The program was quite intensive. I had orientation and mobility training, occupational therapy, physical therapy, music, textile arts and handycrafts, as well as three different types of communication training and counseling with a psychologist. I also had vision therapy.

During orientation and mobility training, I learned to plan to go someplace and to travel there effectively using my white cane. I learned to be quite a good cane traveler even though I’d always had trouble using the cane correclty, and still do. After about six weeks at the center, I started using public transportation to go there on Monday and to travel back home on Thursday or Friday. I also learned to travel to and from the local supermarket and to use customer service to get my groceries.

Occupational therapy had several components to it. First, there was the teaching of housekeeping and cooking skills. I didn’t yet master these when I graduated from the center, so went on to live at an independence training home afterwards. Another part of occupational therapy was group-based training in compensating for our visual impairment with our other senses. This, for me, was quite easy in the practical sense, but my social skils difficulties emerged there. There was one great workshop on applying make-up without sight. I loved it.

I also had physical therapy because I have poor posture and had developed mild scoliosis as a result. Physical therapy wasn’t all that effective, because I didn’t practise the exercises out of session.

Vision therapy was very interesting. At first, I had a vision therapist who didn’t acknowledge my admittedly tiny fraction of residual vision. When at one of the communication sills training sessions though, another vision therapist joined the trainer and I arranged for sessions with her. My vision was still virtually non-existent, but I learned a lot about what I could and couldn’t do with it. I also had an opportunity to select NoIR sunglasses that would help me cope better with my light sensitivity. This vision therapist was very patient and thorough in answering my questions. Though in the end my emotional adjustment problems surfaced, which of course she wasn’t trained in dealing with, I did feel very much validated.

Music, textile arts and handycrafts were quite useful too. Though I didn’t practise what I learned there for another few years to come, the instructors there taught me that I could indeed do arts and crafts with no vision. Music wasn’t my cup of tea, so I stopped playing the keyboards after graduating from the center.

The communication skills training sessions were great. I took basic communication skills, assertiveness and communication about your visual impairment. I had one trainer for both basic communication skills and assertiveness and another for the communication about your visual impairment training. The first one was great at letting me see that, if I moved past my anxiety, I could be quite sociable. The second trainer was the one who cooperated with the vision therapist.

Counseling was the least useful bit about the rehabilitation program. The psychologist was blind herself and for one thing didn’t grasp my emotional adjustment issues. She focused on the fact that I had to put non-disabled values into perspective and for example learn to ask for help. Though I did accept this eventually, I still couldn’t cope with the many losses of vision loss. I don’t think a four-month-long rehabilitation program is enough for that anyway, as I still don’t fully accept this ten years on. However, the other problem was we just didn’t click in terms of communication styles. I didn’t open up easily and there just wasn’t enough time in the program for me to work on even just those issues that are due to blindness. I understand that, but the psychologist could’ve refrained from rushing me through a dozen issues.

I was a residential client there even though the rehabilitation center was in my home city. In the evenings, the clients spent lots of time amongst ourselves discussing our rehabilitation process. This was very healing to me. It also was a great opportunity to practise social skills.

Even though my rehabilitation was supposed to be my first step towards independence, I was in many ways at my highest point in terms of independence while there. I don’t like to admit this, since I did learn other sklls in the ten years since. Also, the fact that I didn’t become more self-reliant makes it look like I just need a kick in the pants. In fact, however, the program had lots of one-on-one instruction incorporated, which I can’t get now that I’m a mental patient. I still grieve this loss of independence, but this possibly has to do with my adjustment to my psychiatric illness.

Graduation

In the U.S., May is the month of graduation. In the Netherlnds, high school students are currently in the midst of their final exams, which will determine whether they will graduate or not. I still have nightmares about final exams, even though I graduated grammar school with above-average grades in 2005.

As Ginny Marie points out in her spin cycle prompt for this week, graduations can mean many things. People can graduate from preschool, elementary school, high school or college, but they can also graduate from certain life events or habits. For me, high school graduation marked my graduation from pretending to be normal. Two weeks before the graduation ceremony, with me already having had my final exams, I E-mailed the student counselor to let her know I wasn’t going to Radboud University to study English after all, but was instead going to my country’s blindness rehabilitation center.

The high school graduation ceremony was okay. The principal had planned a lot of pooha about how great my school had been to accept a blind student – I was the first and so far only blind student at this school – and how wonderfully they’d helped me graduate. When I heard of these plans, I was pissed. I argued that I didn’t want to be singled out. This was one reason for my objection. Another was the fact that grammar school had been a bad experience right from the start. In September of 1999, I wrote in my diary that I knew I’d rather graduate a grammar school in six years than a low-level special education high school in four. I don’t know how much of that was truly wanting to, and how much was needing to in order to please my parents.

High school graduation marked my graduation from doing what my parents and teachers wanted me to, which was (or seemed to be) pretending my invisible disabilities didn’t exist. Even though it was my high school tutor who had arranged the initial intake interview at blindness rehab, he half assumed these people could push me to go to college better than he could. In reality, they ended up recommending the basic rehab program. My parents were initially not amused, because the program lasted only four months, but they eventually accepted that I needed to work on myself first before going to university.

Even though I graduated from parent and teacher-pleasing, I didn’t graduate from dependence. Till far into my stay at the acute ward in 2008, I did just do what my social worker or doctor wanted me to. Even though this lessened a bit when I got to the resocialization ward in 2009, I’m now at once at the opposite end of the pendulum, defying my staff constantly, and at once I’m still dependent on them. I ultimately end up doing what they want me to, after all.

Now I know that no-one is truly independent. Then again, parent/child relationships, schools and institutions instill more dependence on the child, student or patient than does ordinary adult life. Next year, it’ll have been ten years since my high school graduation. Will I move towards true interdependence then?

Always Greener on the Other Side

Another jouranling prompt. This one was meant for kids, and it asks what we mean when we say “The grass is always greener on the other side of the fence”. This saying speaks to me and makes me feel quite uncomfortable, because I can definitely relate.

I remember that, when I go to a new place, like anew ward or institution or supported housing or whatever, I’m always optimistic that this will be suitable for me, but I’m very soon disappointed. For example, when I first got to this institution, I felt truly like I’d landed in a cozy place, or as close to it as an institution can get. Within days, however, I heard the staff reprimand the clients for not doing their chores and I was upset at the phrasing: “You guys are the most independent group, the more independent one on this unit.” A few days later, I was further disappointed when my staff insisted I do chores I cannot do. Pretty soon, I wished I’d stayed in the big city institution, and I still wish for that at times.

I have always felt like this. When I came into blindness rheabilitation in 2005, I saw it as a wonderful opportunity to learn sklls and aadjust to my blindness. By the middle of the four-month rehabilitation program, I felt I was lagging horribly behind and hadn’t learned most of the skills I’d wanted to. Same when I came into independence training, the psychiatric institution and every ward I’ve been at since except this one, where I was quickly realizing that it wouldn’t be helping me much.

I read in a paper a few months ago that this thing where “the honeymoon is over” and people start out okay but end up worse after a while, is common in people with borderline personality disorder. I remember in 2007, when I’d only been in the hospital for a few weeks, being told by another patient, who happens to have BPD too, that I need to work on myself, not on changing my environment every so often. I realize this at some level, but at another level, I think: “What do you think I was in training and treatment for all these years? To change the environment? No!” Yet maybe I still look to others to change me, not to myself.