DISABILITY
Posted by SANDY
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DISABILITY July 07, 2000 07:39PM |
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RE: DISABILITY July 07, 2000 08:28PM |
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RE: DISABILITY July 07, 2000 08:55PM |
It takes a long time - minimum of 6 months for CPP Disability. I was turned down because I only filled out the form. They really need more information than there is room for. Here is the Appeal letter I wrote and it was accepted.
First of all, even though it is believed that symptoms generally do not appear until the late thirties or forties, that is, visible symptoms such as stumbling, falling, clumsiness etc LOU'S HD EARLY SYMPTOMS
. Most PHD's (Persons with Huntington's Disease) start emotional and behavioral symptoms years before. I have not just started showing symptoms, I had severe emotional problems in my thirties, was on anti-depressants and often had rage attacks and displayed inappropriate behavior. I am still on anti-depressants and will be for the rest of my life. I could not sleep and was often awake 4-5 times per night, every night.
At least two years before I learned of Huntington's in my family, I was having severe difficulty in my teaching. I had several emotional outbursts and anger outbursts and more than once had to leave the room to gain control. I did not know why this was happening at the time. I kept falling for no reason, injuring myself often, I would bump into desks and tables and hit my shoulder or elbow on door jams as I was going through them. My main concern was for my memory as I couldn't seem to keep organized, forgot meetings, lost things as soon as I put them down and was generally confused. Although I am getting worse, since discovering that I have the disease, doctors have been able to prescribe drugs to help ease some of the symptoms.
While teaching a class, I would stumble over my words often and was beginning to think I had developed a stutter; however I also would stop talking in the middle of a sentence because the word was gone. I had a lot of difficulty recalling content I consistently called students by the wrong names and couldn't remember times, dates or numbers. I sought medical help and got psychological counseling. Because I was also having marital problems at the time, I assumed that stress was the cause.
I was tested 2 years later and by then the symptoms had gotten worse. I taught for two more years until I got to the point where I couldn't remember anything and the students were starting to take advantage of the situation. Co-workers had to call me just before a meeting. At the time, I was teaching multi-media (computers, Internet, photography, printmaking, design) all at once in the same room. My ability to multi-task got so impaired that I had to depend on students to teach each other methods. This took a tremendous amount of energy and I could not keep it up. I was going into my dark room at noon for silence. The noise in the school caused me to have severe headaches most of the time.
Presently - I am doing better with exhaustion since I can lie down when I get tired. Stress makes my symptoms much worse. Crowded situations cause me to panic and get confused. I am able to shop in familiar stores but have trouble with my sense of direction. Making decisions is difficult because my mind won't stay on one task for long and any distraction causes me to forget what I was doing.
Although I typed this myself, it has taken me 3 ? hours to get to this point, even though I knew what I wanted to write. I have to keep stopping to wait for a word or thought to complete itself. My thinking process has slowed down so much I have lost my self-confidence and do not participate in conversations requiring me to interact with more than two to three people at a time. I can no longer play games that require me to calculate in my head or use instant recall, including any game that has a "time" element on it.
My brain does not store information correctly and retrieving that information is very inconsistent. My reading comprehension skills have been greatly diminished - by the end of a page I cannot remember what I read. I find it increasingly difficult to follow directions, can no longer do many of the things I used to be able to do. My mind wanders or just goes vacant. I sit and stare for long periods of time and then my mind will work overtime, thinking about everything I am doing and being careful all of the time to say the right thing, not get hurt, not forget things. It is impossible for me to relax my muscles and have neck problems because of this.
Because Huntington's Disease is degenerating my brain, these difficulties occur randomly as the disease progresses. This unpredictability can be extremely frustrating for me and when I get frustrated I don't just let go of it, I panic. For example, I may make a request clearly at one moment but have tremendous difficulty saying it right only a few seconds later. Because of this I have found that I don't talk much anymore and try to avoid saying things spontaneously as they do not come out right or I overreact and say something inappropriate. Often I have no control over this and blurt out words or answers or talk about something totally off of the topic, interrupting whoever is speaking at the time. I sometimes find myself muttering out loud.
I have been treated for depression and suicidal thoughts.
Because of my training as a teacher, I still have tremendous coping strategies and can come up with creative ways of covering up. I have found many things that I can do to make this disease easier on me and my family and they participate in helping me to come up with ideas.
First of all, even though it is believed that symptoms generally do not appear until the late thirties or forties, that is, visible symptoms such as stumbling, falling, clumsiness etc LOU'S HD EARLY SYMPTOMS
. Most PHD's (Persons with Huntington's Disease) start emotional and behavioral symptoms years before. I have not just started showing symptoms, I had severe emotional problems in my thirties, was on anti-depressants and often had rage attacks and displayed inappropriate behavior. I am still on anti-depressants and will be for the rest of my life. I could not sleep and was often awake 4-5 times per night, every night.
At least two years before I learned of Huntington's in my family, I was having severe difficulty in my teaching. I had several emotional outbursts and anger outbursts and more than once had to leave the room to gain control. I did not know why this was happening at the time. I kept falling for no reason, injuring myself often, I would bump into desks and tables and hit my shoulder or elbow on door jams as I was going through them. My main concern was for my memory as I couldn't seem to keep organized, forgot meetings, lost things as soon as I put them down and was generally confused. Although I am getting worse, since discovering that I have the disease, doctors have been able to prescribe drugs to help ease some of the symptoms.
While teaching a class, I would stumble over my words often and was beginning to think I had developed a stutter; however I also would stop talking in the middle of a sentence because the word was gone. I had a lot of difficulty recalling content I consistently called students by the wrong names and couldn't remember times, dates or numbers. I sought medical help and got psychological counseling. Because I was also having marital problems at the time, I assumed that stress was the cause.
I was tested 2 years later and by then the symptoms had gotten worse. I taught for two more years until I got to the point where I couldn't remember anything and the students were starting to take advantage of the situation. Co-workers had to call me just before a meeting. At the time, I was teaching multi-media (computers, Internet, photography, printmaking, design) all at once in the same room. My ability to multi-task got so impaired that I had to depend on students to teach each other methods. This took a tremendous amount of energy and I could not keep it up. I was going into my dark room at noon for silence. The noise in the school caused me to have severe headaches most of the time.
Presently - I am doing better with exhaustion since I can lie down when I get tired. Stress makes my symptoms much worse. Crowded situations cause me to panic and get confused. I am able to shop in familiar stores but have trouble with my sense of direction. Making decisions is difficult because my mind won't stay on one task for long and any distraction causes me to forget what I was doing.
Although I typed this myself, it has taken me 3 ? hours to get to this point, even though I knew what I wanted to write. I have to keep stopping to wait for a word or thought to complete itself. My thinking process has slowed down so much I have lost my self-confidence and do not participate in conversations requiring me to interact with more than two to three people at a time. I can no longer play games that require me to calculate in my head or use instant recall, including any game that has a "time" element on it.
My brain does not store information correctly and retrieving that information is very inconsistent. My reading comprehension skills have been greatly diminished - by the end of a page I cannot remember what I read. I find it increasingly difficult to follow directions, can no longer do many of the things I used to be able to do. My mind wanders or just goes vacant. I sit and stare for long periods of time and then my mind will work overtime, thinking about everything I am doing and being careful all of the time to say the right thing, not get hurt, not forget things. It is impossible for me to relax my muscles and have neck problems because of this.
Because Huntington's Disease is degenerating my brain, these difficulties occur randomly as the disease progresses. This unpredictability can be extremely frustrating for me and when I get frustrated I don't just let go of it, I panic. For example, I may make a request clearly at one moment but have tremendous difficulty saying it right only a few seconds later. Because of this I have found that I don't talk much anymore and try to avoid saying things spontaneously as they do not come out right or I overreact and say something inappropriate. Often I have no control over this and blurt out words or answers or talk about something totally off of the topic, interrupting whoever is speaking at the time. I sometimes find myself muttering out loud.
I have been treated for depression and suicidal thoughts.
Because of my training as a teacher, I still have tremendous coping strategies and can come up with creative ways of covering up. I have found many things that I can do to make this disease easier on me and my family and they participate in helping me to come up with ideas.
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RE: DISABILITY July 08, 2000 10:55AM |
Sandy -- are you in Gardenerville, NV? I am in Reno. Three years ago I finally got SS Disability. It took one year. But my brother applied and his only took 3 or 4 months. If you get a test for HD, so can prove you actually have it, I think it will take less time as HD is such a serious and terminal type disease. My case was not as noticable as my brother's at the time.
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RE: DISABILITY July 08, 2000 11:01AM |
Lou, you write out your experiences so well! I think one aspect of this disease which is interesting, is that even though all these outward things go on, somehow we are aware of everything going on in some inner safe place in our minds. If only other people could realize this! I also worked in a teaching environment at a community college and found myself having problems which I couldn't explain, mainly to do with talking. I've always been quiet, but I became so quiet I really wasn't doing my job! Now I understand what was going on. I'm glad you have creative coping skills. I am still active in many ways and enjoy life everyday.
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RE: DISABILITY July 10, 2000 09:23AM |
I am new to the internet, and only found this site a few weeks ago. It's a great site. Please forgive me if I commit any "faux pax's". While I am new to the internet, I am NOT new to HD. My husband of 23 years has HD, he has not worked in over 7 years. He gets disability from SS. Yes, it was 6 months before he could get his first check. We started the process, and it was 2 or 3 monnths before they even sent him to a doctor. The person that helped us at SS was very nice. We live in a small town, so maybe that helped. The SS employee was not the one to make the decision, but he told me he could tell Bobby was disabled, and wanted to help. He couldn't tell me what to write on the form, but he did say to answer all questions as fully as possible. He said imagine your job is to turn this person down, unless they can convince you they do not have any other options. So that is how I approached the form. I gave examples of things he used to do, and how it was so much harder now, or even impossible to still do them. They sent Bobby to a place for an IQ test. That was the only thing they sent us to. The man that gave the test started out with kind of an attitude, I was ready to leave! I didn't want Bobby subjected to that hateful attitude. But we needed the disablity so badly. By the end of the test his attitude had changed, Bobby was trying so hard to get all the answers right! But he just couldn't anymore. So he was approved. But, how we lived that 6 months was tough. We had to go to the food bank about once a month. I worked, but my job was only so-so, Bobby had always made a lot more money than me. Family helped when they could, and our church was so good to us, paying our utilities several times. Somehow the good Lord helped us get thru. Check around, there are agencies that will help pay things. I wish you the best, I know how hard it can be. But, you can make it. Susan
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RE: DISABILITY July 12, 2000 01:11AM |
Sandy: I had genetic testing done 1/98. I have the gene and already had symptoms. I got tested thinking I didn't have HD. I decided to go out on disabilty retirement 5/31/99. Because my docors did not provide enough detail, I was turned down by the State Washington's long-term disability plan. Then I had neuropsych testing & that doctor addressed every test to my job to show I could not do the job. Then, the disability company approved my claim. On Social Security disability, they make you wait a 5-month waiting period with no $. I was approved for SS on the first round, which is unusual. I think it was the extremely detailed report from the dr. Good luck!
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RE: DISABILITY August 19, 2000 11:10AM |
Hello,
When I read your letter,I couldn't stop crying. It touched me in such away you'll never know. My husband also has hd and for yrs we had marital problems. For yrs we blamed this and that,well now I feel small.
I have ask my husband over and over again for forgivness,because of the roller coaster of a ride marriage wise. I pray I can be more understanding and patient with my husband in the future as the disease progresss. This disease seems to be bringing out the best in my husband and my self. Your letter has really touch both of us because its also us.
Thank you so much for sharing,this letter truly blessed us.
Greg and Paula
When I read your letter,I couldn't stop crying. It touched me in such away you'll never know. My husband also has hd and for yrs we had marital problems. For yrs we blamed this and that,well now I feel small.
I have ask my husband over and over again for forgivness,because of the roller coaster of a ride marriage wise. I pray I can be more understanding and patient with my husband in the future as the disease progresss. This disease seems to be bringing out the best in my husband and my self. Your letter has really touch both of us because its also us.
Thank you so much for sharing,this letter truly blessed us.
Greg and Paula
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