Dealing with Social Security is usually a frustrating experience. Phil tells and illustrates how it is done. Thanks Phil.

Phil can be reached by e-mail. "Phillip J. Hardt" <phardt1@cox.net>

Phil Hardt, HDSA Person of the Year

Here's what I have used to help many Phds (person's with HD) successfully apply for Social Security Disability and other type of disability on the first go round. I know other "sources" (see Part 2) can be used and cited but these are easily available and credible.

I've also included several other applications for examples that I've helped others fill out. This will be the first time all of this information is in place for "one-stop shopping" .....Phil

Part 1

1. Call 1-800-772-1213 and request a phone interview with your local social security office for Social Security Disability. They will set up a date and time when someone from the local social security office will contact you for your interview. (The reason why I specify "phone interview" is because some of those with HD look okay physically and may not make a very good impression, as far as needing disability, if they go in person.) If they ask why you're requesting a phone interview tell them you're afraid to drive anymore because of your cognitive symptoms or because you've already quit driving, whichever the case may be.
    
   
2. Someone from your local Social Security office will then contact you prior to your interview date to get your mailing address so they can send you out the application packet, medical release forms, and a confirmation letter of the date and time for your interview.
    
   
3. Be sure to be home at the time they schedule the phone interview call for. After the phone interview they will tell you where to send all of the completed information. Do not delay in completely everything and sending it back in right away. Their instructions will say NOT to enclose any other information with their forms but do it anyway (see Parts 2 and 3 for what to enclose) because you must educate them about HD.
    
   
4. It will then take several months for them to process your application, request information from your doctor(s), etc. but don't worry because once approved, they will make your initial disability check retroactive back to your original date of application.

All-in-all, the application process was very painless and easy. And, once YOU qualify, they can also take applications for your spouse and children (if you still have any living at home) as they will also qualify for a small monthly check.
 

Part 2

Information from the following brochures and URLs should be printed out and the information highlighted and enclosed with your application for SSD:

There are two that are appropriate:

"Fast Facts About HD" (Order by contacting HDSA at 800-345-HDSA or https://www.nyic.com/hdsa/edu/edu.pl?orderform , or get a copy from your local chapter. One copy of each is free so send for them today!!!) Inside this brochure I would underline everything under "What Is Huntington's Disease" and put a big arrow pointing down to where it lists "Symptoms."
The second brochure is: "Huntington's Disease, A Guide For Families" (Order by contacting HDSA at 800-345-HDSA or https://www.nyic.com/hdsa/edu/edu.pl?orderform , or get a copy from your local chapter. One copy of each is free so send for them today!!!) Inside this brochure I would highlight page seven in it's entirety and only "Cognitive/Intellectual Symptoms" and "Motor Symptoms" on page eight and paperclip the book open to these pages.

I would also print out the following web pages, making sure to include the information about where they are from to ensure credibility. In my opinion this is some of the the best information out there regarding HD!! I would highlight all of the symptoms under "What are the Major Effects of the Disease?" http://www.ninds.nih.gov/health_and_medical/pubs/huntington_disease-htr.htm

I would also print out print out the following from the Kansas City Medical Center at: http://www.kumc.edu/hospital/huntingtons/ and would highlight the following two paragraphs:

"The clinical features of Huntington's disease can be thought of as a triad of emotional, cognitive and motor disturbances. Symptoms include chorea (dance-like involuntary movements), clumsiness, slurred speech, depression, irritability and apathy. Cognitive losses include intellectual speed, attention and short-term memory."

"Huntington's disease affects people in different ways. One member of a family may have more trouble with clumsiness while another may have emotional outbursts. Moreover, symptoms of Huntington's disease in the same individual change over time."

The reason for having you mark all of the above is simple - to educate those at Social Security regarding what HD is and to get you approved on the first go-round.

Part 3A

Section I – Information About the Disabled Person

Questions A-I Self explanatory

Section II – Your Illnesses, Injuries or Conditions and How They Affect You

What are the illnesses, injuries or conditions that limit your ability to work?

Huntington’s Disease is a degenerative brain disorder for which there is no cure. My symptoms have been cognitive (forgetting, inability to do two things at once, ability to comprehend is slowed and decreased, can’t complete even simple tasks), mental and emotional (irritability, loss of social inhibitions, confusion, apathy, can’t control my anger any more and severe depression), physical (clumsiness, lose balance frequently, awkward gait, uncontrolled chorea movements all over my body). Symptoms will continue to get worse until I can’t walk, talk or swallow any more.

How do your illnesses, injuries or conditions limit your ability to work?

Increasing forgetfulness and loss of short-term memory make it almost impossible to perform even routine tasks. Any stress caused by due-dates or schedules exasperates symptoms and makes my symptoms more exaggerated than they already are. Unabated emotions, especially irritability and loss of social inhibitions makes working with others extremely hard as I blow up easily and tell everyone exactly what’s on my mind, and then don’t care what I have said or who I have offended. Constant chorea movements and lack of balance control makes it impossible for me to type, hold things, or get things.

C-G Self-explanatory

H If “yes,” did your illnesses, injuries or conditions cause you to:

(Check all that apply.)

• work fewer hours? (Explain below.)
• change your job duties? (Explain below.)
• make any job-related changes such as your attendance, help needed, or employers? (Explain below.)

All of the above. Huntington’s Disease is an incurable, degenerative brain disorder and once symptoms start they continue to get worse and worse until you are afraid to do anything and lose the ability to do simple ordinary tasks. It continues to worsen almost daily.

I. Self-Explanatory

J. Why did you stop working?

I stopped working because my disease has progressed degenerated to the point where I can no longer control my emotions, think properly or make good sound decisions. I get confused in once-familiar surroundings and fear, because of my lack of balance and severe chorea movements, that I will either hurt myself severely or do something that will hurt someone else.

Section III – Information About Your Work

Questions A-G Self-explanatory

Section IV – Information About Your Medical Records

Questions A-C, D1,2 and 3 and E1 and 2 and F

Self-explanatory

Section V – Medications

Self-explanatory

Section VI – Tests

Self-explanatory (We will describe the genetic test under Section 9.)

Section VII – Education/Training Information

Self-explanatory

Section VIII – Vocational Rehabilitation Information

A is self-explanatory

B) Would you like to receive rehabilitation that could help you get back to work?

• Yes
• No

Check No and write in: Vocational Rehabilitation is not helpful when you have Huntington’s Disease because ability to learn new tasks is poor and because I am more slow and disorganized than before. My poor motor coordination, balance, and constant chorea prevents safe employment in manual labor.

Section 9 – Remarks

Huntington’s Disease is an incurable, degenerative brain disorder that affects every part of an individual’s life. Characteristic features of HD include involuntary movements, dementia, and behavioral changes. Family members may first notice that the individual experiences mood swings or becomes uncharacteristically irritable, apathetic, passive, depressed, or angry. These symptoms may lessen as the disease progresses or, in some individuals, may continue and include hostile outbursts or deep bouts of depression.

HD may affect the individual's judgment, memory, and other cognitive functions. Early signs might include having trouble driving, learning new things, remembering a fact, answering a question, or making a decision. Some may even display changes in handwriting. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult.

In some individuals, the disease may begin with uncontrolled movements in the fingers, feet, face, or trunk. These movements—which are signs of chorea—often intensify when the person is anxious. HD can also begin with mild clumsiness or problems with balance. Some people develop choreic movements later, after the disease has progressed. They may stumble or appear uncoordinated. Chorea often creates serious problems with walking, increasing the likelihood of falls.

The disease can reach the point where speech is slurred and vital functions, such as swallowing, eating, speaking, and especially walking, continue to decline. Some individuals cannot recognize other family members. Many, however, remain aware of their environment and are able to express emotions.

Part 3B

Here are examples of how I would fill out the questions on a disability application, whether it be applying for LTD (Long Term Disability) or SSD (Social Security Disability), or another State sponsored disability program. Although YOUR individual symptoms may be slightly different, which will change your individual answers to each question, more importantly I hope you get the gist of how I've tried to answer the questions, using HD symptoms in your explanations. Once again, I'm not saying that this is the only way to do this, but hope it will help provide others who are starting this process with ideas.

If you feel like you still need a little extra help, please e-mail me your symptoms or problems you've been experiencing at work or home, or the symptoms or problems your loved one is experiencing at work or home and I will be happy to help you out! Simply e-mail me at phardt1@home.com .

1-Describe your symptoms:

HD is a degenerative brain disorder for which there is no cure. My symptoms have been primarily cognitive (forgetting, inability to do two things at once, ability to comprehend is slowed, comprehension is decreased), mental and emotional (irritability, loss of social inhibitions, confusion, apathy, running red lights and don't care, can't focus on simple tasks, can't control my anger any more), physical (clumsiness, uncontrolled movements all over my body, lose balance frequently). See enclosures for additional information.

A-What brings on your symptoms or makes them worse?

Stress and fatigue aggravate symptoms

B-If you have pain where is it?

N/A for Huntington's Disease

C-How often do your symptoms occur like day or week?

Intermittently all the time.

D-Have your symptoms changed since you began having them?

They've become more noticeable to me and others and have progressively gotten worse.

E-How does your impairment affect your ability to complete routine activities or chores?

Increasing forgetfulness and loss of short-term memory make it extremely hard to perform routine tasks. Unabated emotions, especially irritability and loss of social inhibitions, make working with others very hard. Lose temper too easily and don't care either.

2-Do you take medicine?

Yes

A-What kind?

Anti-Depressants to control depression and suicidal thoughts that are inherent with HD.

B- How often?

Daily. Will never be able to discontinue, only increase.

C-Does medicine help?

Currently, but from what I've read, will have to be increased continually.

4-Is there anything else you do to relieve your symptoms?

Nothing. There is no cure for Huntington's Disease and it is degenerative- my inability to perform normal, everyday things is getting harder and harder which really frustrates me. HD keeps getting worse until you die.

5-What do you do for exercise?

Water yard when balance is okay.

6-Describe what I do on an average day?

FILL IN WHAT YOU DO USING SAME FORMAT AS I HAVE SHOWN HERE.

7-What activities are you NOT able to do now because of your symptoms that you were able to do in the past?

Afraid to do almost everything now as I have lost my self-confidence. work/housework Burned self with grease because of clumsiness 3-4 times, got written up 3 times for being rude to customers, drop and spill things continually. Recreation, personal care like grooming bathing, dressing I'm still able to do unassisted for now but much slower than before. Too confusing sometimes too.

8-Do your symptoms affect your ability to do these things YES or NO?

sitting: uncontrollable muscle jerks and twitches make sitting difficult
standing: intermittent loss of balance causes problems sometimes
walking: is starting to be harder and I find myself focusing on each step
lifting/carrying: afraid to lift or carry for fear I'll drop load if uncontrollable jerk happens
using your hands: more clumsy now, cut self frequently, and drop things often
bending: unaffected yet
kneeling, squatting: harder when experiencing balance problems climbing don't climb because I'm afraid of loosing balance while on a ladder
reaching forward: loss of balance makes uncomfortable at times
working or reaching overhead: loss of balance makes uncomfortable at times
hearing: interpretation or comprehension of words is getting worse and must have others repeat things often
speaking: already experiencing problems remembering words, no slurring yet, vulgar when I lose temper
traveling to are from work: Have begun running red lights and will have to quit driving very soon.
reading the newspaper: can't do any more because of loss of attention span
watching TV: can't remember who is who or what's happening so isn't enjoyable any more
driving the car: will stop driving soon as I'm afraid of killing others or family when running red lights
using the telephone: takes long time to recognize voices and to recall numbers to dial. If people leave me messages I don't remember them later.

9-Your height:

INPUT YOUR HEIGHT HERE.

10 -Names of 2 people we can call who know of your condition?

WOULD INCLUDE YOU FAMILY DOCTOR, NEUROLOGIST, PSYCHOLOGIST, PSYCHIATRIST,OR OTHER FRIENDS.

11-Do you have any significant mental problems or emotional? If yes explain.

Those normally associated with HD, personality changes, drastic mood swings, loss of social inhibitions, cognitive decline, etc.

12-Do your mental emotional problems affect your day to day living or working? If yes explain.

Don't want to get up in morning, medication helps a little but makes sleepy and slower and dulls emotions

13-Have you ever received any mental or emotional treatment tell why if yes.

IF YOU'VE BEEN TO A PSYCHOLOGIST OR PSYCHIATRIST PUT THEM HERE, OTHERWISE PUT "NOT YET"

14-Do you think you need a mental or emotional evaluation in regard to YOUR disability benefits? If yes tell why.

Possibly, since cognitive and emotional symptoms are all part of HD

15- Do you have a counselor?

PUT IN NAME OF YOUR PSYCHOLOGIST OR PSYCHIATRIST IF YOU'VE SEEN ONE REGARDING HD OR HD-RELATED SYMPTOMS.

16-Do you need another person help or need reminders or supervision in performing/completing the following activities? If yes, explain. Yes or No

bathing: Not yet
brushing your teeth: No
fixing your hair shaving: Yes, Because of movements must use electric shaver because have cut myself before using razor
selecting appropriate clothing: Yes, can't decide which clothes to wear
cooking: Yes, keep forgetting to turn off burners and stove
paying bills: Yes, have problems remembering when they're due or where I put them to be paid
visiting: Don't visit because I'm afraid to drive more than absolutely necessary
shopping/making change: Not yet
riding the bus: Maybe, get confused often and may lose directions. Have gotten lost before in familiar surroundings and own neighborhood.
taking care of children: No, all children are grown up

17-Do you have difficulty keeping your mind or attention on a task/activity? If yes explain.

Yes, get distracted easily now, can't focus or remember well.

18-Do you have difficulty completing task? If yes, explain.

Same as 17 above.

19-Do you have problems making decisions? If yes, explain.

Yes, can't make up my mind or I act impulsively and do things I would have never done before.

20-What upsets you?

Change. Noise. Multiple instructions. Become frustrated not being able to perform as well as I did before. Can't control my emotions anymore

21-When your daily routine changes how do you react?

I can't cope well and find myself unable to figure out what to do next.

22-When you have stress /or pressure how do you react?

My chorea movements increase and I become more animated and begin to slur my words and not think logically. I also lose my temper easier.

How often does it happen?

Depends on what "triggers" it during the day. Sometimes something small and sometimes something big. I try to avoid anything that would be stressful now like never using the freeway and never driving during rush hour, keeping radio off so there are no distractions, etc.

23-How do you get along with other people?

I have a very short fuse now and say exactly what's on my mind. Before I know I've done it I've told someone off. I am very aggressive now and don't care what others think or if I've hurt them with what I've said.

Part 3C

1. Please describe what you do on an average day:

I get up, need help showering, grooming and dressing because of constant movements, loss of coordination and having to balance myself on something else continually. Can fix something simple to eat but eating requires extra time because of chorea movements. I’m afraid to use burners on stove because I have forgotten to turn them off for several hours before. I can’t even clean a little any more because even small things tire me out too easily and must take constant breaks. Finishing tasks is hard because if the phone rings or I’m interrupted, I forget what I started to do before. I watch TV or listen to the radio. I can’t read any more either because I can’t focus and because of constant chorea movements. I can’t drive any more so I just stay at home.

2. Do you need help taking care of your personal needs, bathing and grooming? _ Yes _No If yes, what kind of help?

Increasing forgetfulness and need for constant assistance accomplishing routine things such as showering, dressing, and grooming because of balance problems and constant chorea.

3. What is the most difficult self-care activity for you to do and why?

Every single self-care activity is extremely hard because of chorea, short-term memory loss, and balance problems.

4. Describe any change in your ability to do these self-care activities since your condition began and explain the cause for the change:

My ability to care for myself will only worsen as my degenerative brain disorder, Huntington’s Disease continues to get worse.

5. Do you take any medications for your condition _ Yes _ No If yes, please list the names and how often you take them.

I take Zoloft, an antidepressant daily to control depression and suicidal thoughts that are inherent with Huntington’s Disease. I will never be able to stop taking it, and will eventually end up increasing dosage as disease progresses.

1. Where do you live (house, apartment, mobile home) and who lives in the household with you?

I live with my husband/wife.

2. Do you plan and cook your own meals? _ Yes _ No If no, do you normally not cook, or are you unable because of your condition? How does it prevent you?

It is too confusing to plan meals ahead or to cook more than one thing at a time. I am too afraid that I will leave a burner on again and possibly burn the house down. I used to cook all the time and loved preparing meals for my family.

3. Do you do the household cleaning, clothes washing, yard work or any other work around the house. _ Yes _ No If no, why not? If yes, please describe what you do:

I cannot clean any more because I knock things over or spill them because of my chorea and balance problems, and get too exhausted.

4. When you start a job, like washing dishes or cleaning a room, do you have trouble finishing the job _ Yes _ No If yes, what happens?

Yes, if I get interrupted or see something else in the room that catches my attention I lose focus and forget what I was doing and leave the job half done. I can’t wash dishes or clean anymore because of my chorea movements and balance problems. Even when I try to help out I don’t clean everything as well as I once did and although I realize this, I don’t care now.

5. Do you do any shopping _ Yes _ No If yes, describe what you shop for, how often and how long it takes you to shop.

No, I haven’t been able to drive for over 4 years now and must rely on others to take me with them. Can’t do shopping any more because I don’t have the strength or balance to any more. My chorea has knocked things on the floor and broken them before.

6. Please describe any changes in your ability to do these activities since your condition began and explain the cause for the changes.

Everything has gotten worse. There is no cure for Huntington’s Disease and it is degenerative- my inability to perform normal, everyday things is getting harder and harder which really frustrates me. HD keeps getting worse until you die.

1. Do you get along well with the people in your household _ Yes _ No Explain.

Unabated emotions, especially anger and irritability, when combined with loss of social inhibitions make me blow up and scream and yell and throw a temper tantrum at any little thing, or if I don’t get my way. Everyone must walk on eggshells around me for fear of setting me off.

2. Do you get along well with other people in general. _ Yes _ No Explain.

I used to before becoming emotionally volatile and loosing my temper for any little reason. Others don’t understand this disease and why I am like I am now. I guess it’s scary to them.

3. How often do you visit with friends or relatives?

I don’t visit very often because most of my friends quit coming by after my diagnosis. It’s hard for them to take me declining and behaving uncharacteristic of the person they once knew. We make time to stay with relatives now but not for long as I don’t want to be a burden to them and it’s not as frequently as we used to.

4. Are you active in any religious club(s) or any other groups. _ Yes _ No How often do you go?

I cannot participate any more because of not being able to drive and being too much responsibility for someone else to come and pick me up. My speech is also unintelligible and I cannot initiate conversations. Others are afraid I’ll fall and hurt myself.

5. What are your hobbies or pastimes (reading, handicrafts, hunting, biking, hiking, bowling, watching TV, etc.)?

I cannot do anything I loved to be before because of coordination and chorea-related problems. I can’t focus long enough to read and don’t enjoy it anymore because of terrible short-term memory, I can’t remember what I just read about and this frustrates me.

6. Describe any changes in these social and recreational activities since your condition began and explain the cause for the change.

I have been unable to do any of my favorite things since progressing and I will lose even more as Huntington’s Disease relentlessly progresses. Since I’ve also lost most of my self-confidence I’m even afraid to try anything either.

1. Do you drive a car _ Yes _ No

I haven’t been able to drive for over 4 years now.

2. Do you use the bus _ Yes _ No

No I cannot. I can’t remember where I’m going and get lost easily. Can’t walk to bus stop anyway.

3. Do you run errands by yourself (like going to the post office) _ Yes _ No

No, I cannot run any errands as I cannot get around by myself.

4. Do you manage your bills and other business matters _ Yes _ No

I am no longer able to stay focused long enough or even remember how to do most everyday things like paying bills anymore. Very frustrating.

5. Do you use the telephone book to find a number you do not know _ Yes _ No

Can’t call out using a phone and can’t use a phone book either.

If no to any of the above questions, please explain here.

Already explained with each question above.

1. Have any of these things changed since your condition began. _Yes _ No Why did they change?

I haven’t been able to do anything listed above for over 4 years and as Huntington’s Disease is degenerative and as more brain cells continue to die I will be unable to do more and more.

Have you tried to work since your disability began _ Yes _ No What happened?

I haven’t tried since everything is already too frightening and without any self-confidence I fear I would just feel worse and more frustrated about my inability to do what I used to do than I already do.

Sample of Another Disability Application

Part 3C

I. Self-Care Activities

1. Please describe what you do on an average day:

I get up, need help showering, grooming and dressing because of constant movements, loss of coordination and having to balance myself on something else continually. Can fix something simple to eat but eating requires extra time because of chorea movements. I’m afraid to use burners on stove because I’ve forgotten to turn them off for several hours before. I can’t even clean a little any more because even small things tire me out too easily and must take constant breaks. Finishing tasks is hard because if the phone rings or I’m interrupted, I forget what I started to do before. I watch TV or listen to the radio. I can’t read any more either because I can’t focus and because of constant chorea movements. I can’t drive any more so I just stay at home.

2. Do you need help taking care of your personal needs, bathing and grooming? _ Yes _ No

If yes, what kind of help? Increasing forgetfulness and need for constant assistance accomplishing routine things such as showering, dressing, and grooming because of balance problems and constant chorea.

3. What is the most difficult self-care activity for you to do and why?

Every single self-care activity is extremely hard because of chorea, short-term memory loss, and balance problems.

4. Describe any change in your ability to do these self-care activities since your condition began and explain the cause for the change:

My ability to care for myself will only worsen as my degenerative brain disorder, Huntington’s Disease continues to get worse.

5. Do you take any medications for your condition _ Yes _ No If yes, please list the names and how often you take them.

I take Zoloft, an antidepressant daily to control depression and suicidal thoughts that are inherent with Huntington’s Disease. I will never be able to stop taking it, and will eventually end up increasing dosage as disease progresses.

1. Where do you live (house, apartment, mobile home) and who lives in the household with you?

I live with my husband/wife.

2. Do you plan and cook your own meals? _ Yes _ No If no, do you normally not cook, or are you unable because of your condition? How does it prevent you?

It is too confusing to plan meals ahead or to cook more than one thing at a time. I am too afraid that I will leave a burner on again and possibly burn the house down. I used to cook all the time and loved preparing meals for my family.

3. Do you do the household cleaning, clothes washing, yard work or any other work around the house. _ Yes _ No If no, why not? If yes, please describe what you do:

I cannot clean any more because I knock things over or spill them because of my chorea and balance problems, and get too exhausted.

4. When you start a job, like washing dishes or cleaning a room, do you have trouble finishing the job _ Yes _ No If yes, what happens?

Yes, if I get interrupted or see something else in the room that catches my attention I lose focus and forget what I was doing and leave the job half done. I can’t wash dishes or clean anymore because of my chorea movements and balance problems. Even when I try to help out I don’t clean everything as well as I once did and although I realize this, I don’t care now.

5. Do you do any shopping _ Yes _ No If yes, describe what you shop for, how often and how long it takes you to shop.

No, I haven’t been able to drive for over 4 years now and must rely on others to take me with them. Can’t do shopping any more because I don’t have the strength or balance to any more. My chorea has knocked things on the floor and broken them before.

6. Please describe any changes in your ability to do these activities since your condition began and explain the cause for the changes.

Everything has gotten worse. There is no cure for Huntington’s Disease and it is degenerative- my inability to perform normal, everyday things is getting harder and harder which really frustrates me. HD keeps getting worse until you die.

1. Do you get along well with the people in your household _ Yes _ No Explain.

Unabated emotions, especially anger and irritability, when combined with loss of social inhibitions make me blow up and scream and yell and throw a temper tantrum at any little thing, or if I don’t get my way. Everyone must walk on eggshells around me for fear of setting me off.

2. Do you get along well with other people in general. _ Yes _ No Explain.

I used to before becoming emotionally volatile and loosing my temper for any little reason. Others don’t understand this disease and why I am like I am now. I guess it’s scary to them.

3. How often do you visit with friends or relatives?

I don’t visit very often because most of my friends quit coming by after my diagnosis. It’s hard for them to take me declining and behaving uncharacteristic of the person they once knew. We make time to stay with relatives now but not for long as I don’t want to be a burden to them and it’s not as frequently as we used to.

4. Are you active in any religious club(s) or any other groups. _ Yes _ No How often do you go?

I cannot participate any more because of not being able to drive and being too much responsibility for someone else to come and pick me up. My speech is also unintelligible and I cannot initiate conversations. Others are afraid I’ll fall and hurt myself.

5. What are your hobbies or pastimes (reading, handicrafts, hunting, biking, hiking, bowling, watching TV, etc.)?

I cannot do anything I loved to be before because of coordination and chorea-related problems. I can’t focus long enough to read and don’t enjoy it anymore because of terrible short-term memory, I can’t remember what I just read about and this frustrates me.

6. Describe any changes in these social and recreational activities since your condition began and explain the cause for the change.

I have been unable to do any of my favorite things since progressing and I will lose even more as Huntington’s Disease relentlessly progresses. Since I’ve also lost most of my self-confidence I’m even afraid to try anything either.

1. Do you drive a car _ Yes _ No

I haven’t been able to drive for over 4 years now.

2. Do you use the bus _ Yes _ No

No I cannot. I can’t remember where I’m going and get lost easily. Can’t walk to bus stop anyway.

3. Do you run errands by yourself (like going to the post office) _ Yes _ No

No, I cannot run any errands as I cannot get around by myself.

4. Do you manage your bills and other business matters _ Yes _ No

I am no longer able to stay focused long enough or even remember how to do most everyday things like paying bills anymore. Very frustrating.

5. Do you use the telephone book to find a number you do not know _ Yes _ No

Can’t call out using a phone and can’t use a phone book either.

If no to any of the above questions, please explain here.

Already explained with each question above.

1. Have any of these things changed since your condition began. _Yes _ No Why did they change?

I haven’t been able to do anything listed above for over 4 years and as Huntington’s Disease is degenerative and as more brain cells continue to die I will be unable to do more and more.

2. Have you tried to work since your disability began _ Yes _ No

What happened? I haven’t tried since everything is already too frightening and without any self-confidence I fear I would just feel worse and more frustrated about my inability to do what I used to do than I already do.

Part 4

The ability to work and be productive in integral to our and others perception of ourselves. When a person has a disease or disability that prevents them from working as they used to be able to, they still should be able to work in a different fashion. In some countries the issue of disability is handled by the family taking over the support and care of the person who can no longer care for themselves or be employed. In other countries a significant governmental safety net is available to provide supportive and rehabilitative services. In some countries, such as the United States, the safety net is available (in late 1995) but only after some significant hurdles have been overcome to prove that the person in question is not able to care for themselves any longer.

The letter below has been slightly changed from the sample given in the back of the book by Neal Ranen from the Huntington's disease Clinic at The Johns Hopkins University.

Springfield, MO 12345

Re: Thomas Smith, KUMC No 1234567

Dear Ms. Jones;

This is to provide medical support of the disability application of Mr. Thomas Smith who has Huntington's disease.

Mr. Smith was seen in our Huntington's disease clinic for the first time on November 15, 1994 and was diagnosed as being affected with Huntington's disease (HD). Symptoms began in 1993. We have followed Mr. Smith since then and are confident of the diagnosis based upon clinical observations and his positive family history of relatives (father, uncle and his sister.) with Huntington's disease. MRI findings on September 19, 1995, included atrophy of the caudate nuclei and the cerebral cortex.

Huntington's disease is an inherited neurodegenerative disorder that is gradually progressive, ending in death from infection of general debilitation an average of 16 years after onset.

There are three characteristic clinical features: (1) loss of the ability to control bodily movements; (2) loss of ability to think and to act quickly, to learn and to remember and (3) apathy and severe depression, often resulting in suicidal behavior. Patients also exhibit poor social judgment and may be irritable and aggressive.

When last examined on December 15, 1995, Mr. Smith had abnormal eye movements, slow/dysarthric speech, poorly coordinated finger-thumb tapping, and rapid alternating movements, a wide-based gait with poor heel to toe walking, choreiform movements and brisk deep tendon reflexes. He is at high risk for falling. The sensory examination, Romberg and cranial nerves are not affected in Huntington's disease.

Mr. Smith is slow and inaccurate with calculations, has poor recent memory, and at home cannot remember to carry out routine tasks such as: taking telephone messages, cooking or doing the laundry. His employer reports that he can no longer perform his duties on the assembly line. Frequently he made costly errors in filling customer orders when he was moved to a less demanding job in the factory. For these reasons, he cannot work there any longer. The patient last worked on July 26, 1995.

We do not routinely administer IQ tests to people with Huntington's disease for purposes of disability assessment. Although they decline, the IQ remains above 70 and does not adequately reflect the person's ability to work. This is because the person can perform some tasks when continually prompted, as is the case with IQ testing. However, people with Huntington's disease cannot perform even a simple sequence of tasks unprompted as would be the case at even a low job level.

Vocational Rehabilitation is not helpful to people with Huntington's disease, Their ability to learn new tasks is poor. They are slow and disorganized. Their poor motor coordination prevents their safe employment in manual labor.

Mr. Smith has suffered from depression associated with Huntington's disease since 1994. He is apathetic and irritable. These symptoms also interfere with his ability to work.

In summary this 39 year old man was well until 1994 when Huntington's disease began. He has been unable to work since September 30, 1995 because frequent costly job related errors and the fact that he can no longer drive to work because of his Huntington's disease.

We hope that you will grant disability to the fatally ill individual. If you wish further information, please call us at (913) 588-6970.

Sincerely yours,

Richard M. Dubinsky, MD
Associate Professor of Neurology

pc: Dept. of Medical Records, KUMC
Mr. Thomas Smith
789 West 3rd Street
Kansas City, MO 65432

Provided by Phil Hardt. Phil can be reached by email. "Phillip J. Hardt" <phardt1@cox.net>

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