It has caused me to lose everything, why on earth did it have to be me? :'(
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According to the Dictionary
Spinocerebellar disease is the degeneration of the cells in the cerebellum and/or spinal cord, hence damaging parts of the nervous system that control movement.
This disables the patient from using his/her hands and legs in normal coordination, and in later stages even the ability to speak and eat is greatly weakened. .
This is because the cerebellum which is responsible for the precision and fine control of voluntary movement, in its early stages of development (when the person is roughly below 15 years of age), automatizes certain motor, mental and sensory skills, hence these skills do not require the conscious part of the brain to pay much attention or thought to it. Other patients without this disease, and whose cerebellum has been damaged at first, are not able to walk, but can learn this skill again, although it is now not automatically controlled..
Symptoms
Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions. Symptoms generally begin in childhood before puberty, and may include:
-Unsteady gait and uncoordinated movements (ataxia) -- gets worse with time
-No reflexes in the legs
-Abnormal speech
-Loss of coordination and balance, which leads to frequent falls
-Decrease in ability to feel vibrations in lower limbs
-Muscle weakness
-Changes in vision, particularly color vision
-Hearing loss -- occurs in about 10% of patients
-Jerky eye movements
-Foot problems, such as hammer toe and high arches
-Muscle problems lead to changes in the spine, which may result in scoliosis or kyphoscoliosis.
-Heart disease usually develops and may lead to heart failure. Death may result from heart failure or dysrhythmias that do not respond to treatment. Diabetes may develop in later stages of the disease.
Treatment:
There is no cure for Spinocerebellar Degeneration.
However, occupational therapy or rehabilitation, which includes the usage of walkers, ankle-weights and heavy eating utensils to allow the patient more independent mobility and coordination, helps to prolong the rate of degeneration of the neurons, helping the patient to accommodate daily activities for a longer period of time, since contracting this disease.
The patient will have to use the wheelchair in the later stages of the disease.
Speech rehabilitation and communication aids help the patient as they often lose their speech ability, and might choke more frequently during meals.
Orthopedic interventions (such as braces) may be needed for scoliosis and foot problems.
Treatment of heart disease and diabetes may help improve the quality and duration of life.
Thursday, March 18, 2004, 3:00 PM
Thank you so much to my family and friends, for sticking around me all the time, being by my side when I needed your help. Thank you for your assurance when I thought I couldn’t do it. Thank you for your time, backing me up all the time, encouraging me when I felt down, giving me a cheery smile when many others showed their black faces.
No good deed is too small to go unnoticed.No matter what happens in the future, I will always remember your kindness and all the aid you have rendered me. No matter what, you must continue to persevere and help each other. No matter what, remember the times that we had together, good or bad. No matter what, don't see the hopeless end, but continue to acknowledge the endless hope...
So I've done what I wanted to do, cherished the last moments with my friends and family, and I'm ready to leave in peace. This is probably my last post, as it is taking too much effort for me to type this, and I'm afraid I can no longer do so.
I sincerely thank everyone who has given me their support and encouragement throughout this tough journey.
Dear Dad, Mum, and Brother, I love all of you always. Do not be sad for my departure, because I'm contented to have such a wonderful family who have always been there for me, and I'll be happy wherever I will be. Take care, Your daughter.
I'm glad I have persevered till now, with the support from my family and friends. However, I know I don't have many days left, because typing this post has become more difficult - it's even tougher than running 2.4km.
Now, I can barely communicate, and I need the aid of a notebook for me to write down things I want to say. Perhaps I shouldn't walk around the house so much, then I won't trouble my family so much. It's really wasting a lot of their time, just moving me around the house and outside.
Over these few years, I've seen my family stick together even more ever since. Even my brother, who's been quarrelling with me from young, has changed into a much better person, helping out with all the house work, bringing me to the hospital for rehabilitation, even buying new things for me every week even though I don't need them at all.
It's really encouraging to know that while I go out of the house and walk in that weird manner, when others stare at me with their piteous eyes, my family is always beside me to support me, ignoring even the strange glances thrown my way. It's good to know that while there are frowns all around, there are some cheerful smiles to brighten up your day, and that is what I wish to do, not for myself, but for other patients who share the same feelings, who are segregated psychologically from others who feel we are different.
I really want to work on my rehabilitation, to get better as soon as possible, even though I know it's not really possible. I want to show others that I am strong, that not even this disease will make me quit, because I don't want my family to give up and quit either. If I can do it, won't it be even more of an encouragement to others?
I hope that my family will continue to stay strong, even after I leave. I don't think I have much time left. I want this family to stick together, not only in times of trouble, but even after the physical pain is over but the psychological pain carries on in the heart.
I'm really sorry that I've been taking up all your time. I wish there was something more in which I could do to help out.
I'm really happy with my sister, even though I've just gotten two more specialists to help my younger sister. All these have sapped my bank account dry, and I just can't afford any personal luxuries for myself, but of course I can't let all these show in front of her.
We just received a complaint letter from her new teacher from the school for the handicapped saying that she's always late for lessons because she wants to walk up the stairs instead of taking the lift. Now, I spend much of my time visiting her at the school, and bringing her to the hospital to practise her rehabilitation. Sometimes it really aches me to see her hand trembling in a vain struggle to control her pen.
Nevertheless, we never gave up, and I continued to encourage her. I'm really proud of my sister, because I can see that her effort in moving around independently has really paid off. Yet in this time of struggle, I'm still hoping that our efforts to find a cure for her will not be fruitless...
My parents spent quite a big sum of money getting a wheelchair for me. I'm really grateful for what they have done for me, but I don't know how much longer I can live and I really do not wish for them to waste any more money on me.
I have seen others with the same disease and some are already bedridden. I know one day I'll be in the same situation as them, and I'm already prepared for it.
Moving around is getting more difficult than I thought. I even had problems eating yesterday, spilling all the food around my bowl, and choking quite a little on my food. I'm always late for lessons nowadays, but I don't want to slow my friends' progress in school. I regret not reconsidering my mother's advice to move to another school for the handicapped. Maybe she was right. I wouldn't have any friends there, but for the sake of my friends, I should.
Although my friends are the only ones in school who know about my disease, everyone else stares at me when they help me up the stairs patiently every morning. It's hard when I see their heartless,expressionless eyes staring straight at me. It's hard for me when I know that many other people don't care for others, yet I know there are some who will be by your side in times of trouble and despair. They are the ones who smile at you everyday, helping you up when you fall. They are true friends, and I don't want ever to give up on them, and to give them up.
I don't know how to put this, but I guess there's always something that I would have to sacrifice sometime or another. I'm sure my friends would truly understand the purpose behind my decisions, that I do not want to seem like an obstacle in their school lives, always relying on them to get me around from one class to another so slowly. I'm certain that we will stay friends forever, even if we don't see each other. I'm sorry that I've been so troublesome to you, especially since it's not your fault. I'm sorry that I have to leave, but I know it's for the benefit of everyone, especially you, my friends.
Life seems so short now. Time is not on my side. How can I fight against my fate? I can only make the best use of the time I have left. The disease isn't going to go away if I cry. I don't want people to be helping me out all the time. It only makes me feel more miserable, relying on others for my whole life, as short as it is. It makes me feel useless, not being able to do this and that for others. For myself. I may be a handicap in my legs and hands, but not my mental state. If I continue to stay strong, I will be able to help others, and that is what life is all about.
Today, my teacher talked to me regarding my english essay writing. She asked me if I was putting in effort in the assignment as my handwriting was almost illegible.
I didn't know what to say. I was afraid of letting others know about my illness because I don't want to be given special treatment, or worse, be ostracized by anyone in the school. I have already tried my best to write properly, but it is so difficult sometimes I really feel like giving up. No matter how hard I try, my hand seems as if it isn't mine. Can this illness get any worse? There are so many things I want to see, to do, to experience. This is unfair. :(
All I ask for now, is to live my fullest before I leave this world. I want to do my family proud while I still can, and spend the short time I have left with them. To make them worry about my illness is the last thing I want them to do. I'll stay strong.
I feel useless. Just these few days, I have dropped and broken quite a few cups. I know, mum and dad kept quiet about it because they didn't want me to feel hurt. How I wished it had all been due to my carelessness, but I know, I can no longer control my body like before.
Today, I was walking to school as usual, and I saw a group of kids playing at the playground. I stopped by to take a look, but they were having so much fun and did not notice I was there. They were running straight towards me, and just as I tried to move my body away from them, I couldn't. It was as if my body wasn't mine for that few seconds.
I don't wish to stay like this, to not be able to control the movements of my own body. Can anyone even imagine what I'm going through?
I feel so helpless I cry to sleep everyday. I don't know what is going to happen to me, and neither do I have the courage to face it.
Will I still be able to do the things I want to do? Will my friends still be there for me? Will I just break down today and never live to see tomorrow?
I'm not sure if I can deal with this. Maybe I should just spare my parents and my family of this burden. All I see in front of me, is darkness that leads to nowhere.
My sister's brother posting here. I don't know why, but I have been depressed these few days. Perhaps it is my sister's disease. Perhaps it's because I can only look on as she suffers. I don't understand. Just barely a month ago, we had been a happy, happy family. Now, everything's gone, all taken by the Spinocerebellar Degenration disease. My sister talked to me on her schoolwork just a few days ago. Now, she is staring into blank space everyday. I feel useless as her brother. I feel useless that I could do nothing to help my sister, to lift her out of her misery. I could only hope, and hope hard, that she will recover. Even though there wasn't any cure for this disease to date, I still hoped. Hoping for a miracle...
I've been reading up on this disease that I've gotten. It's really depressing when you find out so much information about this spinocerebellar degeneration disease and yet there is no cure for it. Why did this disease choose me? I'm so young, and yet there's such a rocky headstart to my life. The future seems so dark, so uncertain. I'll never know when death will knock on my door. I'll never do all the things I wanted to do. I'll never fulfill all the dreams I've had.
So I've found out the truth the hard way after all this while. Why didn't my own mother tell me I had this disease?...... Mom, I know it might be hard on you, but don't you think it's up to me to decide the path I will walk, since it's my life? It's difficult, but why did you think I shouldn't have known of it earlier?
The signs of the disease are usually not noticed by the patient as they will usually blame it on fatigue or slow reflexes. However, over time the patients themselves will slowly suspect that it is anything but a laughing matter. During this time if they are not diagnosed with the disease, they will feel inferior and lose their self-confidence. Family members who are aware of the condition yet choosing to hide it from them should give them the moral support and encouragement to pick themselves up. Humans are social creatures and thus tend to stick together. Otherwise, the patient might develop mild to serious depression, depending on themselves. This, coupled with the disease would amplify the effects of family members and friends. Thus, moral support and encouragement are very important.
In the case of Valerie girl, it has been noted that briefly, for a period of time that she was suffering from mild depression for blaming herself for everything. It is, however, fortunate that she was supported by her kin that she gained her confidence back. This, essentially, gave her greater courage to face up to the disease in the later stages.
The Spinocerebellar Degeneration Disease, also known as the Spinocerebellar ataxia (SCA), is, over my years as a neurologist, one disease that I do not want to tackle. It has, to this day, no known cure for it. The disease is alarmingly tough to accept for the friends and families of the patient as they can actually witness the slow degeneration of the patients reflex and practically no coordination between their muscles. It is believed by many of those who knows the existence of this disease that the disease is not progressive. It is, however, a progressive one, from losing coordination of hands such that using of cutlery and writing is a chore, to being unable to walk and finally and eventually, take the path that every man who lives must take, the path to nothingness. I believe, though, Death, strictly speaking, is in fact the start of a new adventure for the patients, so painfully aware of their own mortality that they in fact have sufficient time to settle their own affairs. This must be a small consolation for their family as, i believe they would rather this than a quick sudden death to a car. Most humans take time for granted in their lives, and when they go they go usually with things left behind, whereas the patients make the most of their time left, and when they go they usually go in peace...
I told the doctor that I suspected something was wrong with my daughter, and he sent her for a full check-up. He finally told me that my daughter had spinocerebellar degeneration disease, as he double-checked through Magnetic Resonance Imaging (MRI). He described it to me, concluding that it could not be cured. I was torn apart. I could not bring myself to tell my daughter that. I brought the scans to other specialists, double-checking in the hope that the first doctor had somehow made a mistake. Why is this world so unfair? Why does it have to be my daughter? I would rather have the disease than my daughter... I can't bear to see my daughter suffer in pain... Am I to blame? Is this a heriditary disease that she contracted? But why didn't I get it then, instead of her?
Lately, I've noticed my daughter having some problems with her coordination. She cannot even use a needle properly as her hands shake too much, and she dropped a hot pan which could have injured herself severely. I don't know what to do.