Archive for the ‘Handicapped,’ Category

I  found myself in the hospital and  I remember thinking, well I should be out here soon, as I didn’t like hospitals.  N OT… well, things got worse and I could not move.  This was very frightening to me, since the worst injury I had suffered to date was a broken leg.  Yes going back on writing this is very hard.  I had to recall events that were very hard for me to go through.

The hospital checked me in and took me up to a room.  My whole right side was frozen as I could not move anything.  They had  me on my back, and I couldn’t even  rest.  I am a side sleep person and that was most uncomfortable.  My family came to see me and all felt so strange.  I just wanted to be out of there and was so angry at myself for having this damned   stroke.

My oldest daughter  came in and pushed me in a wheelchair around the facility.  It was good to get out there.  However, I felt useless.  Now remember, I have been self employed for years and have taken care of myself all that time.  Being confined to a wheelchair was awful.  Just the thought of it made me ill.

I was in the hospital for three days and then they decided to move me into a convalescent home.  Once again, I had no control over what was going on.  The place was nice but full full of old people.  I was told that I was going to get therapy there   so I could work on getting better.  Now, I was 67 years old, and  only about 40 in my mind.

Once again, I had to get used to being in the new place with people I didn’t know.  I was  a very private guy and found it very difficult to allow myself to fit in .  The physical therapy people were very kind and put up with my attitude.  My stroke was truly awful… and I needed help getting  in and out of bed, brushing my teeth, going to the bathroom, and just trying to get around in the wheelchair.  I became determined that I was going to lick this problem.

I came accross this blog recently and I wanted to share it with you.

Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.

Victoria Brignell

Published 08 September 2008

‘I dreamt that I saw Iain Duncan Smith riding on an ostrich through Parliament Square. Make of that what you will.’ Victoria Brignell on insomnia and other matters…
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At the time of writing I am going through a bout of insomnia. Last night I lay in bed and watched the green numbers on my digital clock flick through the hours of the night at the same pace as a snail carrying a heavy bag of shopping. By the time dawn arrived, it felt as if those numbers were taunting me. (Lack of sleep does strange things to one's psychological state).

Insomnia is not a new phenomenon for me. Since I became a crip 25 years ago there have been many periods when I've had difficulty sleeping. In my first weeks as a tetraplegic, while a patient in Great Ormond Street Hospital, I was given medication each evening to help me drop off. The nurses were clearly under orders to make sure I received the medicine without fail as there were some nights when I was actually woken up so they could give me the medicine designed to send me to sleep. I never did get to grips with the logic of that.

My most severe case of insomnia occurred in my last year at university. For about a fortnight during my Finals I survived on two or three hours of sleep a night. It didn't seem to do me any harm - I still managed to gain a 2:1. Like Mrs Thatcher, who famously only needed five hours sleep a night in her heyday, I too seem to be able to function with very little sleep.

When I'm not experiencing full-blown insomnia, I often wake up between four and 5am and don't fall back to sleep again. Over the years I've grown used to hearing the dawn chorus (remarkably, we do seem to have enough birds in my area of inner London to create one). If there is such a thing as reincarnation, it wouldn't surprise me to discover I'd been a milkman or a Today programme presenter in a previous life.

It's not uncommon for people with spinal cord injuries to find sleeping a problem. A study of 300 people who had been living with paralysis for 20 years revealed that more than half experienced fatigue. In 1998, Portuguese research suggested that 60 per cent of paralysed people suffer from "sleep disturbance".

Partly this is because we face strains and anxieties in our lives that can make it hard to unwind and relax at the end of the day. But it's also caused simply by the fact that tetraplegics like myself don't become physically tired in the same way that an able-bodied person does. When I go to bed I often feel mentally drained but bodily exhaustion is an unknown concept to me. (Paraplegics may have a different experience).

Our surroundings can potentially have a big influence on our sleeping patterns. In the case of us wheelchair users, it's possible that we might be forced to sleep, permanently or temporarily, in a room that isn't a bedroom. For example, when leaving hospital, there may be a delay in adaptations being completed at home. After my stay in Great Ormond Street Hospital, I spent three years sleeping in what had been my parents' dining room because I could no longer reach my bedroom upstairs. Although this didn't affect my own sleeping ability, I can understand why others might find this unsettling. It was only when my family moved house that I again acquired a proper bedroom.

There are a number of other medical factors that can make sleeping hard for crips (thankfully these don't apply to me at the moment). Paralysed people often need to be turned regularly in bed to avoid developing pressure sores. Sometimes the touch of bedcovers can trigger muscle spasms, either stopping a person falling asleep or waking them up. And a particularly unpleasant cause of a bad night's sleep is pain.

According to the Spinal Injuries Association, about 80 per cent of people with spinal injuries suffer chronic pain. Indeed, pain is cited by spinally injured people as the most important factor in reducing their quality of life. For many, it is the severity of the pain that is disabling rather than the paralysis produced by spinal cord injury. Pain can leave wheelchair users feeling totally exhausted and they may have to pace their work and social life accordingly.

Unsurprisingly, mental distress can also have a major impact on sleep. Some people who become paralysed in an accident may experience post traumatic stress disorder. PTSD is a natural emotional reaction to a deeply frightening, shocking and abnormal experience. Often the disturbing incident is re-experienced through distressing flashbacks and dreams. As well as anxiety attacks, outbursts of anger, poor concentration, feelings of estrangement from others and a lack of interest in normal activities, the symptoms of PTSD include difficulty in falling or staying asleep. Similarly, if a disabled person feels emotionally overwhelmed by their situation and develops depression, this too can affect their sleeping.

As well as reducing my sleep, being tetraplegic means I require not just a bed at night but other equipment as well. My live-in carer sleeps in a room next to mine so I use an intercom system to call her whenever I need assistance. This intercom is a typical one normally bought by parents for their babies, and a few years ago it provoked an amusing conversation.

One evening, shortly after I had gone to bed, my carer noticed water coming through the kitchen ceiling. We called the landlord who arranged for an emergency plumber to visit us. When this plumber failed dismally to detect the source of the problem, my landlord advised us to call the fire brigade. (By this time, the trickle of water had become a torrent). So just before midnight, three firemen trooped through the flat. Luckily, they managed to stop the waterfall (it transpired that a pipe had burst between my flat and the one above it). Of course, while all this drama had been taking place, I was still stuck in bed. As the firemen were leaving, one of them noticed the 'parents' end' of the intercom, turned to my carer and said: "I hope we haven't disturbed your baby". My carer refrained from pointing out that the "baby" was actually 25 years old.

The other piece of equipment I use while in bed is a 'ripple mattress'. This plastic sheet lies on top of a normal mattress and contains channels which inflate alternately with air. Its purpose is to prevent pressure sores and I've used one ever since I became disabled. Some people might find the hum of the pump irritating but over the years I've become accustomed to it and now it seems odd not to hear it in the background. The noise only becomes unbearable when one of the pipes leading from the pump to the ripple mattress gets accidentally disconnected. My carer then has to get down on her hands and knees to work out exactly where the pipe has become loose and push it back into position. Most nights, though, the ripple mattress helps to prevent my insomnia rather than causing it.

As you can imagine, lying awake in bed for hour after hour can be a frustrating and lonely experience. It wouldn't be so tedious if I could get up and use the time constructively but that's not possible because there's no one around to enable me do so. Two people are necessary to get me up but I only have one carer with me at night and she's only there on call (like any normal person, she expects to sleep at night). Listening to the radio isn't an option either because it could disturb my carer. If I put the radio on, there's a risk the sound might be picked up by the intercom and wake her up.

There still are times when I find insomnia annoying. But in recent years, my attitude towards it has changed considerably. I've grown to realise that these night hours when I'm awake are among my most creative. In the darkness I've composed poems, song lyrics, short stories and play plots in my head. Half of these columns have been devised in the early hours of the morning. Of course, I have no means of writing anything down while I'm in bed. But this acts as a kind of quality filtering mechanism. My philosophy is this. If I can still remember something I've written in my head the next time I have chance to record it on my computer, then that's great. But if I've forgotten it, then the chances are it didn't merit recording in the first place.

Of course, when insomnia strikes, I don't always feel like being creative. Instead, I sometimes occupy my time by setting myself challenges. Can I list all the countries of Africa in alphabetical order? Can I name all Shakespeare's plays? Can I remember the correct chronological sequence of the kings and queens of England? (For some reason, I always get confused during the Wars of the Roses). And can I recite all the lyrics on the Abba Gold album?

Becoming aware that many people, both disabled and able-bodied, have sleep difficulties has helped me to come to terms with my own situation. According to recent research, more than 30 per cent of adults regularly experience sleep problems and only five per cent of adults report never having trouble sleeping. It's reassuring to know I'm not alone.

And although I might sometimes be afflicted by insomnia, there are nights when I sleep perfectly well. Ironically, on one occasion when I did manage to sleep all the way through the night, my carer lay awake worrying that something nasty had happened to me because I hadn't called her. Moreover, whenever I do sleep, I tend to experience the most vivid and entertaining dreams. Perhaps the most surreal occurred during the period I worked in the BBC Political Programmes department. I dreamt that I saw Iain Duncan Smith riding on an ostrich through Parliament Square. Make of that what you will.

Interestingly, for the first decade after becoming disabled, I continued to be able-bodied in my dreams. Maybe because I didn't know any other disabled people during this period (I was the only wheelchair user at both my primary school and secondary school), my subconscious still regarded me as an 'honorary' able-bodied person. It wasn't until I reached university and began living in a hostel with other wheelchair users that my dreams started to feature a disabled version of me. Nowadays I'm sometimes disabled in my dreams and sometimes able-bodied. It's good to have variety in life, I feel!

Thankfully, I hardly ever suffer terrifying dreams. A Travelodge survey last month suggested that more than a million British people regularly have nightmares with common themes including being chased, falling from a great height and being attacked by spiders. Apparently, Amy Winehouse is the celebrity most likely to appear in our nightmares. If I ever do have a dream in which I'm pursued by a spider and forced to jump off Beachy Head into the arms of Amy Winehouse, I'll let you know.

SHREWSBURY, Mass. — The imminent chopping down of a crab-apple tree, to make way for a large trash bin, was the last straw.

Lee Perrone and Pat Henry, residents of a subsidized housing complex for the elderly here, tied chairs to the tree and sat down to protect it. Their protest kept the chain saws at bay, drawing curious onlookers and local reporters. A meals-on-wheels program sent them food. Their landlord, the Shrewsbury Housing Authority, sent them eviction notices.

“My daughter thinks I lost it,” says Ms. Perrone, 74 years old. Her friend Ms. Henry is 65.

The eviction notices brought to a head more than a year of friction between the housing agency and tenants of Shrewsbury’s Francis Gardens apartments, in a battle over cluttered patios, fire codes, an allegedly dangerous garbage bin, and who decides what’s best for old people.

It was the garbage-bin hazard that meant the crab-apple tree had to go, the housing agency said. Another tenant injured her arm after falling on uneven pavement near the trash bin. The place chosen to relocate it was where the tree stood.

Francis Gardens is the kind of “independent living” community that more people who want to avoid nursing homes are winding up in. Residents of such places often cope with limited mobility and advancing infirmity, as they try to preserve their quality of life. In Shrewsbury, a central Massachusetts town of some 33,000, tenants bristled at what they saw as excessive safety precautions.

Francis Gardens, an array of brick-and-yellow-clapboard houses, has 100 one-bedroom apartments that tenants rent for a third of their monthly income. Many residents, especially elderly women living alone, have taken special pride in their decks and patios and decorated them with flower pots and rugs. In the warm months, social life revolves around the outside areas.

The trouble began in June 2007, when a state public-housing inspector noticed that a door on one apartment’s deck was blocked by furniture, which it called a “fire-egress obstruction.” In a letter the next month to residents, Dennis Osborn, executive director of the Shrewsbury Housing Authority, cited violations of building and fire codes.

Later that summer, the authority issued a new obstruction policy. “No chairs, tables, flowerpots, wind chimes, flags, mobiles, birdhouses or similar items shall be placed on decks or patios, or hang from, gutters, hand railings, trees, or the buildings,” it said. “Common entry hallways must remain clear of floor mats, throw rugs [and] welcome mats.”

Tenants acknowledge some decks were overflowing with clutter. Ms. Perrone recalls one deck in particular looked like “the city dump.” But in a letter to the housing authority, 65 tenants asked why everyone should be punished. “Now you want us to take ALL things off our porches/patios,” a move that would give Francis Gardens “a blank sterile atmosphere,” the letter said. “That would only serve to hinder people [who] can’t walk very well from getting out at all.”

The authorities didn’t back down. “You can’t look at that as your patio or your deck,” says Gerald LaFlamme, who was the town’s fire chief at the time the obstruction policy was issued. “You have to look at it as a legal entity called ‘the fire exit.’ ” Mr. LaFlamme says blocked exits have hampered his firemen in the past.

Helen Jarzobski, 93, had set up a plastic table and four chairs on a grassy patch next to her small patio. “I had a little sign that said ‘friends welcome,’ ” recalls Ms. Jarzobski. “People would walk by, and they would sit and talk to me.” The housing authority removed the table and chairs, she says.

The new restrictions were particularly hard for Ms. Jarzobski. After a car accident a year ago convinced her to give up driving after 53 years, her world shrank to the size of her small apartment and her patio.

Ms. Perrone threw away the flowerpots hanging over the handrail of her deck, and removed the sun umbrella under which she used to read. Housing officials took away a rug and curtains she placed in a common hallway, she says.

Mr. Osborn of the housing authority declined repeated interview requests. Richard Ricker, one of the authority’s five commissioners, says the obstruction policy was based on “the lawful commands of the fire chief, and of the state and local inspectors.”

Before Halloween last year, Ms. Perrone borrowed a striped prison-style tracksuit and a cap and wore it to a small protest in the middle of Francis Gardens. She carried a sign that read “State-funded prison for senior citizens.” The protest brought local media attention and put the battle on the map.

After her patio furniture was confiscated, Ms. Jarzobski removed a birdbath from her deck. But Ms. Jarzobski, who is of Italian descent, refused to take down wind chimes and an Italian flag nailed to a tree in memory of her brother, who died in World War II. Her family bought her a new, elevated chair that was easier on her ailing legs — and chained it to a post on the deck to prevent housing officials from taking it.

In September, Ms. Jarzobski received a letter from Mr. Osborn, who ordered her to remove the chair and wind chimes or face possible eviction. Ms. Jarzobski ignored it, and on Sept. 23 received a 30-day eviction notice citing a “violation of the obstruction policy.” She’d lived in Francis Gardens for 32 years.

Ms. Perrone and Ms. Henry, who had been sitting guard at the crab-apple tree, received their eviction notices the same day. The two women, already angered by the obstruction policy, worried that the moved garbage bin would be too close to their windows. And Ms. Perrone says that just because the tree is old and scraggly doesn’t mean it needs to die. “My skin is flaky and I’m old, too,” she says.

Facing eviction, the tree defenders and Ms. Jarzobski filed complaints with the local housing court. Their lawyer chartered a bus to ferry the plaintiffs and other residents to the court hearing scheduled for late September.

After a state legislator decided to mediate, the housing authority chose to avoid a courtroom battle. On Sept. 29, the eviction notices were rescinded. Shrewsbury’s new fire chief, Robert Gaucher, says that as long as the tenants keep the fire-escape paths clear, they can have some personal items on their decks. “We are a little more flexible,” he says.

The crab-apple tree was saved, and the garbage bin is staying put. Housing officials say they plan to patch up the cracked concrete in its current location. To celebrate victory, Ms. Perrone dressed up as a crab-apple tree for Halloween this year. A new tenants committee has been meeting with the housing director twice a month to discuss concerns. “We are not looking for trouble at our age,” Ms. Perrone says.

Write to Philip Shishkin at philip.shishkin@wsj.com

Cell phones distract car drivers more than talkative passengers, and hands-free devices don?t make for safer driving, according to a recent Reuters report on a new study published by the Journal of Experimential Psychology: Applied. Even worse, drivers who use mobile phones are as impaired as those who are legally drunk.

University of Utah researchers used a series of driving-simulation tests to determine that hands-free gadgets such as a Bluetooth headset are just as distracting as holding a phone to your ear. Talking on a cell phone slowed the reaction times of adult drivers aged 18 to 49 to those of senior citizens, according to the study published in the Journal of Experimental Psychology.

Passengers, even chatty ones, are far less distracting because they can point out hazards or remind drivers of upcoming exits, and are more likely to change a conversation (by shutting up or talking less) when driving conditions change — and because they’re in the car, they’re more likely to notice that the driver needs to focus.