To stop being prisoner of my own body

Goal: functioning improvement: medical care at home & communicator alternative with C-Eye System
Big c4af4328 b01b 437c 9c8b 16bdf5bfc897
Supported by 700 people
60 409 zł (81,03%)
To reach our goal: 14 146 zł
Donate

Aleksandra

Amyotrophic lateral sclerosis (ALS)

Warszawa, mazowieckie

Started: 10 January 2017
Ends: 10 May 2017

Warsaw. Along the corridors of one of the most popular Polish daily newspapers' office hurries Ola, a pretty, long-haired brunette. She doesn't know that, in few years, hasty clicking of her high heels will be just a memory. Fingers won't be writing on a keyboard any more, and she won't be asking questions in a lively voice. Illness will take away, subsequently, power in her legs, hands, ability of speech, will throw her into a wheelchair, make dependent on others. ALS, amyotrophic lateral sclerosis, an incurable neurological disease leading to impairment of function of all the muscles, will rob her of the life she knew.


 

Before, Ola was interviewing people herself, courageous and open in her work, as there is no other possibility for a journal employee. Today this is us who are asking her questions, sending them by e-mail, as Ola lost speech ability. However, she is aware of everything and, as long as possible, she wants to decide about herself. As she admits herself, that's what she's finding the most difficult - lack of communication on even the most basic level. Speech is unintelligible and hands stiff, clenched in fists, fingers contracted and limp - you can't even point at something with fingers like these. One can either learn her reactions or wait until she writes something on keyboard, and there's no time for this at all in crisis situation. That's why an eye-operated device is of such great importance for her.

We are asking her about life before the disease. 'I travelled a lot and worked a lot. I'm passionate about music, painting and sculpture, and I journeyed the world in search of beloved masterpieces. As a journalist I was writing mainly about culture, but not only, I dealt with everything that made happy or upset my readers, always trying to respect their view. Work in newspaper's office was my natural element.'

It had been so until, three years ago, disease attacked



 

"First I started stumbling on my left leg, and my hip hurt. After a couple of moths I was already walking with the aid of nordic walking poles. Then the hands refused cooperation, I was unable to grip or write with a pen. Contractions of hands and legs started, muscles became limp. I started walking with a walking frame, as with the poles I was falling back on my head, strangers had to lift me up. I had to go to work by taxi, the bus became too dangerous. In the next few months, problems with speech had started. Despite this, for two years I coped by myself, even if dressing, lacing the shoes, bathing or getting up the stairs gradually became impossible. After two years of treatment for other diseases I was diagnosed with ALS, amyotrophic lateral sclerosis."

ALS kills neuron responsible for muscle movement. Usually it firstly attacks the limbs, taking mobility away. Then it strikes muscles of head and neck, including those responsible for speech. Attacks muscles of pharynx and larynx, disabling capacity to swallow. It destroys also neurons responsible for breathing - lungs start to malfunction at the very beginning - at the end leading to death from suffocation.

'It's an incurable disease, progressing unstoppably, aggressive and merciless. It's a ceaseless, monstrous pain and danger of suffocating, lack of sleep and increasing muscle atrophy that turns person into a plant and at last kills. I'm now chained to the wheelchair or bed, entirely dependent on others, my body is changed and twisted, and strangers treat me like intellectually disabled person. It hurts, but I never ask, "why me"? Instead of pity on myself, I fight!'


 

Ola took joy in discovering the world, now her life is restricted to the four walls of the room. She is a dependent person. In all everyday activities - dressing up, toilette, eating, being carried from bed to wheelchair and back, helps Ola's mother. 'Physically, she knows me the best, helps the greatest. But she needs to go to sanatorium herself, take a rest. My mother is almost 70, she's ailing and tired.'

We ask Ola which of the things that disease had taken away, she is missing the most. 'The worst is the facial muscles paralysis, not only the lost ability to speak, but also that I can't laugh and smile. Before I was always smiling, now I can do so merely inwardly... Hands' and arms' contractions are dreadful as well - it's impossible to brush away hair from the face, scratch oneself, adjust the clothing, lift the coverlet that now weights a hundred kilos, shoo away an obtrusive insect, turn a page in a book or newspaper, switch on the computer or music player. But still I'm trying to eat by myself, hold the mug, or write on the tablet with a special pen. It's very difficult now, as progressing muscle atrophy makes me more and more a prisoner of my limp body."

Despite plentiful stays in hospital and experimental therapy, conducted from the begining of 2016 in Olsztyn, disease is progressing, and Ola has less and less time left. During the last days, her state has worsened. Dehydrated, with strong headaches, she is receiving intravenous drips daily.

Ola needs proffesional care, that will at least partially relieve her mother. Additionally, to make possible keeping in contact with the world for Ola, essential are an equipment and software, allowing writing without use of hands. Unfortunately, all these things, due to the difficult financial situation of both ladies, are beyond their reach. 'ALS is a deceitful disease, needs are changing literally day by day, and the future is always full of negative surprises. But I'm the type of a silent warrior, I don't give up easily and carry on regardless. I believe that the power of will can change even the most cruel twist of fate. And for the fight like this I will designate money coming from your generosity. Maybe it will turn out that, somewhere, a drug for ALS was discovered? I would like to be able to hug somebody again, to turn the pages of a book with my own fingers...'

10 zł

K

50 zł

BEATKA :*

buziam, ściskam, tulam
50 zł

K.

30 zł

Anonymous

Jesteśmy razem, pomagamy i modlimy się!;)
Thumb 10524351 10152635488811810 8731151379065049034 n
50 zł

Piotr Bo

30 zł

Romek Adamski

Show more

Supported by 700 people
60 409 zł (81,03%)
To reach our goal: 14 146 zł
Donate

Strona korzysta z plików cookies w celu realizacji usług i zgodnie z Polityką Plików Cookies.

Ukryj tę wiadomość