The Long Term Disability (LTD) Key

The Long Term Disability (LTD) Key

Linking an Applicants Disease Symptoms to Limitations and Jobs


Introduction

You have read both the Disability Overview Key, and the Physician Key. In addition to what you gleaned from the Overview Key, you now have:
q A segment that contains an overall explanation for your Doctor(s);
q An example of a letter from you to your Doctor(s) explaining precisely what you want from them;
q A disease-specific (Multiple Sclerosis) medical history document that you complete to better remind your Doctor(s) about your symptoms and their specific impact on you;
q An actual experiential example of this document completed to assist you in completing your own; and,
q A blank copy of a Physical Capacity Evaluation (PCE)/Residual Functional Capacity assessment (RFC) form that allows your Doctor(s) to quantify the effect your disease symptoms have on you.

You have determined that you do have a Long Term Disability (LTD) plan; you do have a copy of the Summary Plan Description (SPD) for your plan, and you have decided to apply for LTD. Successfully documenting your disease-specific symptoms so that you can apply for LTD is the purpose of this document: The Long Term Disability Key.

The value of this Long Term Disability (LTD) Key document is:
1. Just as you did for your Doctor(s) in the last Key document, you need to gather together all of the proof for your LTD Insurance Company so that they do not have to do any “additional” work themselves. In essence, you are “proving” to them that not only do you have a disease, and that disease impairs you, the impairment is grave enough that you no longer can perform “work”.
2. By completing the sections contained herein, you will learn so much about the disability insurance benefit process, that it will no longer be intimidating to you when you periodically (they usually seem to run on an every 2 year cycle) have to “prove” that you are still disabled.

As an explanation of the value of this document, the following comment was expressed by a reviewer with MS needing assistance with the LTD “recertification” process:

“…The ‘checklist’ format [of the How-To segment] is ideal. I like the concept of going through all of the steps from the very beginning. Your points regarding documentation and records are the essential details that every disabled person needs to know, understand, and complete. I wish I knew ‘then’ what I know now – but I’m coming from behind and I will win!”

You get the opportunity, with this Key, to “know” ahead of time what is needed, and NOT to have to come from behind!

This Long Term Disability (LTD) Key is segmented into the following components:

q #1 LTD Key: An detailed How-To checklist that walks you through the LTD process.
q #2 LTD Key: A Job Description that includes the PCE’s (physical capacity evaluation) of the essential duties of that “job”. It is included so that you can use it as an example when describing the specific physical, mental and environmental capacity expectations needed for your own job.
q #3 LTD Key: A disease-specific (Multiple Sclerosis) symptom Matrix to use to document your symptoms and the impact on your normal daily living (NDL) activities; both blank and a completed example to use as a reference.
q #4 LTD Key: A Before and After Matrix to use to describe IN DETAIL your NDL when you were working, and now that you are symptom-impaired; again, both blank and a completed example to use as a reference.
q #5 LTD Key: An example of an “actual” LTD application form that has been completed, as an example to assist you.
q #6 LTD Key: Two examples of letters (one from a friend and one from a co-worker) that describe your specific symptom-impairment on your normal daily living (NDL).

Let’s Begin.


#1 LTD Key: An detailed How-To checklist that walks you through the LTD process.

Long Term Disability (LTD) APPLICATION PROCESS

This segment is a checklist provided to walk you through the LTD application process. As you read, and complete each section, check it off so that you can keep track of where you are in the process.

What and Why LTD?

Long Term Disability (LTD) is defined as a severe illness or injury that prevents you from working at all or prevents you from working full-time, for a period of six months or longer.

The purpose of an LTD plan is to protect you and your family from complete loss of income should you suffer a long term disability.

This “How-To” document summarizes a generic Long Term Disability application process in everyday language and explains how and when to apply for benefits. Please refer to your LTD Summary Plan Description as you proceed through this checklist.

LTD plans usually are provided in two ways:
v Paid for by a company as part of the company’s employee benefit package; and,
v Paid for by a person as an individual insurance plan

q My LTD plan is:  Company paid;  Self paid.

q I am eligible for LTD.

A long term disability plan usually covers a physical or mental illness that prevents employees from performing the job that they occupied at the time the illness/accident occurred.

To be eligible, a plan participant usually has to meet at least three conditions:

1. S/he has been covered (i.e., have worked for the company, or have owned the policy) for the length of time prescribed in the SPD;
2. S/he expects the condition to last at least a specific period of time (usually, longer than the short term disability plan lasts – six to twelve months); and,
3. The “triggering” illness/accident is both the specific reason that you cannot do your job, and, the impact is that you have lost “work pay”.

A wide range of conditions usually are covered, including (but not limited to):

• progressive, uncontrolled cancer;
• loss of major functions of arms and/or legs;
• serious brain damage;
• alcohol or drug addiction;
• and severe mental illness.

q Is there a pre-existing restriction for illness or injury in your plan?
q If yes, does it apply to you? Yes  No 

Some plans have a pre-existing condition provision. That is, if you were treated (or if a prudent person would have been treated) for a condition within 3 months prior to entering the plan, long term disability benefits would not be available during the first 12 months of coverage for that condition only. Coverage would be immediately available for other conditions.

q I understand how my LTD plan works.

Usually, under an LTD, monthly benefits are paid to the qualified applicant who is totally or partially disabled for a period longer than a specific number of days. That first period of time is called the waiting or elimination period, and no benefits are paid during that time. Often, the STD or Short Term Disability plan covers this period of time, or, a combination of STD coverage and sick leave. (Check the STD checklist for further information.)

q My LTD Plan elimination period is _______________ days. I will obtain income during this time through the use of: _______________________________________________________________

q My LTD benefits will last until: ____________________.

Disability benefits usually continue until the earlier of the date that you complete the maximum benefit period, are able to return to work (see below the difference between work of “own occupation”, or “work of any occupation”), retire or die. Assuming that your retirement age will be age 65 or older, your LTD benefits, once received, should last until you are able to return to work; you retire; or you die, unless the plan specifies another date. Some plans offer benefits until age 70, for example.

q My LTD benefits will equal _______% of my pre-incident monthly income, or _____________.

q I have the other types and amount of income that will deducted from my LTD monthly income:
q Worker’s compensation:______________
q Social Security Disability Income:____________
q Third Party Disability:_____________
q Other:______________

The monthly benefit is equal to a certain percentage of your basic monthly pre-incident earnings, minus the amount of certain other types of income you receive, such as Social Security or third party disability payments and Workers' Compensation benefits. If you are partially disabled, partial benefits may be payable.

q There are other conditions in my LTD plan that I must be aware of. They are:
For example: in some plans you may find that you can still be covered, and remain in a pay status, if the illness “goes away” for a short (usually, 30 days) period of time. The only time this is not applicable, usually, is if this “illness break” occurs during the elimination period. That means, if, during your, say 120 day elimination period before receiving income from your LTD policy, you have an “illness break” of two weeks, that two week time frame extends your 120 day time frame an additional two weeks.

q My LTD “days” are:  week days only;  calendar days.
q I must use my accumulated/accrued sick leave during my elimination period. Yes  No 
q I must use my accumulated/accrued vacation time during my elimination period. Yes  No 
q My sick leave days are:___________________
q My vacation days are:____________________


Check your SPD to see if you are required to use all the sick/vacation leave you have built up. If you must take them, use them for income during your LTD elimination time frame.


UNDERSTANDING THE LTD FORM

Prior to working on the actual LTD form, it is important to remember that this is an INSURANCE PROCESS. What this means, is, that you are preparing to “convince” your LTD insurance company that you have an illness or accident that keeps you from doing your “job”; because of this, you do not receive pay for work performed.

Earlier, we mentioned two types of “job”. They are:

1. Your own, or your “pre-incident” job or occupation; and
2. ANY job that your age, education, and prior work experience qualifies you to perform.

Your SPD will tell you how long your LTD insurance will cover you from being able to perform your own job, and any job.

q My LTD insurance will pay me for not being able to perform “my own occupation”, which is: ____________________________________ ; for ___________.
q My LTD insurance will pay me for not being able to perform “any occupation” beginning: _______________________________.


DOCUMENTING YOUR INABILITY TO PERFORM YOUR “OWN OCCUPATION”

The first thing you need to review is your own job description. Hopefully, your job description will contain what is called “physical capacity criteria” that indicate what specific physical, mental, and social “levels of interaction” are required when performing your job. (See LTD Key #2, an example of a job description that includes the physical capacity criteria.)

If your job description does not include such criteria, you will need to develop them. For example, in your job:
1. If you need to use a computer, this activity could require you to be able to carry out small motor skills proficiently for 2-4 hours per day, or longer.
2. In using this computer, you would be required to sit for 2-4, and up to 6 hours per day.
3. In using this computer, you would be required to have visual skills capable of viewing a computer screen for 2-6 hours per day.
4. If your job requires you to inspect a warehouse, this activity requires you to walk for 2-4 hours at a time; for distances up to 2 miles; to conduct activities in a non-office work environment that could reflect temperature differences between heat and cold.
5. This warehouse inspection could require you to climb the equivalent of 5 flights of stairs at least 4 times per day.
6. As a Welder of iron plating, you could be required to stand, sit, bend, for 4-7 hours per day.


These are just a few examples of how activities of a job correlate to the physical activities of normal daily living. What you need to do is to develop the physical requirements of your job. Please see #2 LTD Key as an example.

q I have developed the physical requirements of my job.
q I have provided a copy of these requirements to both my supervisor, and to the appropriate person in my company’s human resources department. Both have signed off on the document that it is accurate.

Your next step is to complete the “Before and After” activity matrix found at $4 LTD Key. It is important to keep in mind what your end result needs to be. You are documenting YOUR LIFE, to communicate to someone who does not know you what you did before your disease/accident had an impact on your life.

As you review the MS-specific example of Before and After, you will see that the Before section describes Ms. Magura’s physical activities associated with her job as Vice President of Human Resources for Cascade General, the Portland Ship Repair Yard. Please read Ms. Magura’s example carefully. Note that she discusses the job activities in great detail:
1. When the workday began.
2. What type of activities needed to be performed.
3. What type, frequency, duration, and intensity of interpersonal actions with others needed to be performed.
4. The diversity of activities being performed; the length of each workday; the volume of activities; the requirement for multi-tasking, etc.
5. The number of hours being worked each day;
6. What activities were accomplished after work each day; during the weekend.

In summary, what you are doing is “painting a picture” of your life BEFORE your illness/accident forced you to change your activities. You need to be as specific and as detailed as you can be. What you are doing is explain what your “Normal Daily Living” looked like!

Next, you need to complete the “After” side. Again, read Ms. Magura’s example to see how detailed she is in explaining the impact that MS symptoms have had on her ability to perform her normal daily living activities and the physical, mental, and interpersonal actions of her job.

The Symptom Matrix #3 LTD Key that you have already completed to document your symptoms to better discuss their impact with your doctor, are helpful when documenting your “After” side of this matrix. Again, be as specific and as detailed as you possibly can. When you are finished, provide the Before and After matrix to someone who knows you and ask them to critique it. Ask them the following question: “If you were an Insurance Adjuster, does this matrix provide enough information for you to get a clear picture of the impact that my illness has had on me; of the level of impairment that the illness has had on my normal daily living?” If the answer is yes, then you are ready to continue. If no, revise the matrix until the answer is yes.
q I have completed my Disease-specific symptom matrix.
q I have completed my Before and After matrix.
q My matrix adequately describes the impact that my illness has on me, and of the level of impairment that the illness has had on my normal daily living.


Working with your Doctor Reminder

The next step is to review the information about what your Doctor needs to know to help you by completing the Physical Capacity Evaluation or Residual Capacity Assessment Form. (See #1 Dr. Key for the instructions for your doctor. See #2 Dr. Key for a copy of a letter that you can copy to explain to your doctor what you need for him/her to do to assist you with your LTD application. See #5 Dr. Key for a copy of a Physical Capacity Evaluation (PCE) Form for your Doctor to use. )

Make sure that you have 2 copies of both forms. Complete one yourself, as you see yourself impaired by your illness. Provide them, with the blank forms, to your doctor, along with the information document, and your letter of instructions.

REMEMBER: If your doctor has any differences of opinion about your limitations, make sure that the two of you resolve the differences before the doctor completes the Insurance forms for you.

q You have received back from your Doctor, the completed Insurance forms.


Completing the LTD Application

When you complete the Application, you will also need to complete the Insurance Company’s document called “Claimant Questionnaire for Long Term Disability” (or something like this). See #6 LTD Key for an example of a completed document. Ms. Magura placed the questionnaire on the computer, and created a Matrix out of it, so that it can be updated whenever the Insurance Company requests its periodic update.

You now have all of the information needed to complete the LTD application process. Make sure that you have a copy for your records of all of the documents. They should be:

q Insurance Company’s Claimant’s Questionnaire.
q Symptom Matrix.
q Attending Physician’s disability letter.
q Before and After Matrix.
q Physical Capacity Evaluation form.
q Actual Application.

Ensure that you send all of these documents by registered mail, so that you will have proof of receipt. Retain the copy of the receipt with your copy of the documentation.

Documenting Your Inability To Perform “Any Occupation”

By looking into your LTD summary plan description, you should be able to determine how long you can be considered disabled from your own job/occupation. You will also be able to determine when you will need to document your inability to perform any occupation.

What is meant by “any occupation”? Simply stated, this means that your illness has so incapacitated you that you are unable to perform any job that is either full or part time, and which is paid any amount.

To reach this level, your Doctor must agree that you have reached the stage in your illness that you no longer are capable of working. You also must ensure that all of your documentation supports this decision.

You have all of the tools necessary to file for Long Term Disability. Make sure that you keep all of your documents together, so you will be able to find them, when needed.


#2 LTD Key: A Job Description with Essential Duty Physical Capacities
Cascade General, Inc.
Job Description
Job Title: Ship Superintendent Pay Grade: 7
Department: Production FLSA Status: Exempt
Reports To: Vice President Production Manpower and Technical Services
Date: 4/21/98 (revised 8-00)
SUMMARY: As a seasoned Ship Superintendent, is responsible for all activities associated with the profitable repair of ships. Key responsibility for the planning, manning, equipping, and management of a profitable project. Plans, coordinates, manages, and evaluates the effectiveness of work required to repair or modify marine vessels. Work is performed to produce safe, timely, profitable results and satisfied customers.
ESSENTIAL DUTIES AND RESPONSIBILITIES - Independently, and/or through subordinate supervisors, performs the following essential duties and responsibilities:
· Working closely with Craft Directors, the local Unions and Employee Services, determines the appropriate manning levels to result in a profitable project. Works to develop the manpower planning and dispatch function, appropriately capturing the work skills of each employee.

· Plans, coordinates and directs production activities on assigned projects. In conjunction with Project Management and Manpower Dispatch, plans the daily staffing of each project. Audits reports & job progress to ensure the accurate allocation of manpower based on bid proposal and job requirements. Makes appropriate changes where necessary.
· Works closely with the Contracting & Estimating Department to estimate, plan execute, and settle projects. Provides all necessary documentation for bill settlement and negotiation of change orders. Conducts a post mortem on each project completed to determine what went right and should be done again; what went wrong and should be changed; Works with the C & E Dept. to develop and implement a ship repair relational data base.
· Interprets specifications and in coordinates various phases of the repair process, to prevent delays. Ensures that all change order requests and CFR’s are properly written, and approves them before providing them to the Project Management team.
· Writes accurate and timely records or documentation for each job and contributes accordingly to final written specifications. Confers with supervision and project management staff, and project inspectors and suppliers of materials, to resolve repair problems, and to improve repair methods.
· Prepares or reviews reports on work progress, materials used and costs, and adjusts work schedules as indicated by reports. Ensures adherence to the work processes through constant inspection and examination of work in progress
· Through project supervisors, ensures each employee who works on the project receives a fair and accurate performance appraisal throughout each project. Works closely with Craft Managers and Supervisors to resolve complaints and disputes within the workforce.
· Advises contract department of opportunities to increase profits and avoid losses.
· Maintains effective working relationship with craft workers, customers, and contract administrators.
· Ensures that worker safety and environmental concerns are constantly monitored, and that problems are effectively resolved.
· Meets or exceeds Customers’ realistic expectations for quality, productivity, and safety on projects.
· Remains technically competent, ensuring personal skills remain consistent with Cascade’s productivity improvement initiatives.
EDUCATION & EXPERIENCE: An advanced degree in any technical skill associated with ship repair, and/or eight to ten (8-10) years of progressively more complex work experience that demonstrate the acquired ship repair and production knowledge and expertise; or the equivalent combination of education and experience. Three – five (3-5) years experience with successful projects directly resulting from his/her management experience.
The overriding qualifications are the specific demonstrated successful experience staffing, supervising, and ensuring the technical competence of employees in complex, multi-phased, extensive, long-term, high dollar valued projects.
KNOWLEDGES, SKILLS, & ABILITIES
· Demonstrated experience managing a diverse, complex, technical workforce in a union environment.
· Computer familiarity (MS Word, Powerpoint, Excel, Primavera, etc.)
· Excellent proven communication (both oral and written) skills.
· Excellent informal influence skills; the ability to succeed in accomplishing tasks when the performers are not necessarily in the direct line of authority.
· Demonstrated expertise in maximizing revenue and profits on projects through the art and science of negotiation.
· Strong customer service skills.
· Demonstrated ability to effectively plan and execute ship repair projects.
· Demonstrated success communicating effectively and decisively to many and varied customers both internally and externally, while in the midst of chaotic, constantly changing environments.
· Demonstrated ability to translate the requirements of a complex, multi-tasked function into the staffing hours required for efficient and effective project completion.
· Ability to define problems, collect data, establish facts, and draw valid conclusions.
· Working knowledge of the Shipyard and the sequencing of activities necessary for a profitable, efficient project completion.
· Familiarity in working with union contracts.
· Ability to interpret an extensive variety of technical instructions in mathematical or diagram form, and deal with several abstract and concrete variables.
· Strong Shipyard “smarts”.
SUPERVISORY RESPONSIBILITIES: Few to many employees with varying degrees of technical expertise.
CERTIFICATES, LICENSES, REGISTRATIONS: None required.
PHYSICAL DEMANDS: The physical demands for this position are moderate to heavy (see below). The incumbent of this position is required to stand for extensive periods of time, in external climates, and in internal climates exacerbated by external conditions. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
WORK ENVIRONMENT: The work environment for this job is demanding and potentially hazardous due to work on or inside ships as well as travel around ship repair yard. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
ESSENTIAL PHYSICAL REQUIREMENTS

Not Required
Rarely
Occasionally
Frequently
Continually
NR
1% or less
1 – 33%
34 – 65%
66 – 100%
It is important to understand that the work performed by this position in a physical capacity requires walking, standing, sitting, twisting, crouching, and maintaining that posture for extensive periods of time in order to estimate the time necessary to perform work; to observe and inspect the quality of one, multiple, and sequential tasks from any and all of 10 (ten) separate craft functions; and to critique the finished products.
1. Sitting: Occasional -- From 45 minutes up to six hours per day, for meetings with employees, peers, management and customers. Also, to perform computer work.
2. Standing: Frequently -- Stands while inspecting work up to 50 minutes at a time, up to a total of six hours per day. Stands on all types and conditions of surface.
3. Walking: Frequently -- Walks up to 1/2 mile, uninterrupted, on level ground or ramps, up to six times per day. There may be obstructions to be walked around, depending upon the work site on ships.
4. Twisting: Knees – Occasional -- While inspecting in confined areas. Waist – Occasional -- Less than 5 minutes at a time, up to four hours per day. Neck – Frequent -- Up to 30 minutes at a time uninterrupted, up to four hours per day in any direction.
5. Stooping/Bending: Occasional -- Stoops up to 15 minutes at a time, up to 3-4 hours per day while critiquing work.
6. Kneeling: Frequent -- Kneels up to 15 minutes at a time, up to 3-4 hours per day on various types and conditions of surface. May kneel on one knee or both, according to available space and personal preference.
7. Crouching: Occasional -- Crouches for 15 minutes at a time, up to 3-4 hours per day while performing activities.
8. Crawling: Occasional -- Crawls up to 150 feet, 3-4 times per day when in various spaces – both open and confined.
9. Climbing: Frequently -- Climbs ladders, scaffolding, stairs and climbs over obstructions, to as much as 100 feet in height, up to four times per day. The scaffolding and ladders in a tanker are difficult to climb, established to maximize access while allowing work to be done in adjacent areas.
10. Balancing: Frequent -- Walks on various types and conditions of surfaces, wide and narrow.
11. Pushing/Pulling: Rarely
12. Reaching :above shoulder height: Occasional -- Reaches in all directions to test the final product. At shoulder height: Occasional
13. Grasping (firm): Rarely
14. Manipulating hands or fingers (e.g., type, assemble, etc.): Frequent -- Uses fingers to manipulate the computer to prepare many documents. Can be using hands in small motor coordination 4-6 hours per day.
15. Use feet to operate controls: Rarely
16. Lifting/Carrying: Rarely: less than 10 pounds.
ESSENTIAL USE OF SENSES
1. Talking: Continually talks in person or on radio, phone etc. with employees and other production supervision and management to coordinate work efforts and to ensure safety, and to comment on work in progress. Critiques work in progress and resolves problems on the spot. Negotiates and resolves CFR’s (Condition Found Reports), work orders, and bills internally, and externally with customers.
2. Hearing: Continually listens to information from all sources to carry out functions listed under “talking”. Also, must have acute hearing to “read” the work environment, particularly machinery, and rectify problems when they arise.
3. Vision: Continually observes surrounding activities.
· Near Acuity (clarity of vision at 20 inches or less): Inspects fine detailed welding requiring near acuity.
· Far Acuity (clarity of vision at 20 feet of more): Necessary for safety in work environment, and for inspection.
· Depth Perception (three-dimensional vision to judge distance/ spatial relationships): Necessary for safety in work environment, and again, in inspection of work in all stages.
· Color Vision (if required to distinguish colors for job performance or safety): Needed to identify leads and safety tags.
· Field of Vision (if required to observe a large field of vision while keeping eye fixed on a given point for job performance or safety): Must have normal field of vision in order to work safely in the ship areas.
4. Smell: Useful for detecting fire and other potential issues while “environmentally scanning” the work area.
5. Mental Agility: As indicated above under Knowledges, Skills and Abilities, this is a highly technical and complex analytical position. At this, the Senior level, the incumbent is expected to draw upon his/her substantial technical and practical experiences to accomplish the work of ship repair in an ever increasing “faster, cheaper, smarter” way. S/he must have superior deduction, induction, communication and intuition skills. S/he must be able to process an extreme amount of data to all senses, and immediately come up with the optimum solution. Mastery of multi-tasking is critical.








#3LTD Key: Disease-Specific (MS) Symptom Matrix

This Matrix is the Blank TEMPLATE for you to use to document your own symptoms.
This matrix describes the Body’s Basic Functional Systems based on the Expanded Disability Status Scale (EDSS); the impact Multiple Sclerosis has had on Your Name’s body; and how the limitations impact her daily normal activities. This matrix has been updated for Your Company LTD, effective April 2003. (Written and edited by Your Name) This scale, like the other matrixes, were also provided to SSA as evidence for SSDI.

Body
System
What it Covers
How MS Symptoms have Impacted
Your Name
How MS Symptoms Impact
Your Name’s Daily Normal Activities
UPDATED TO YOUR DATE OF COMPLETION

Pyramidal
Ability to walk
Ø My left foot has been numb since about 1985; the right foot since about 1999.
Ø Both feet have the “pins & needles” sensation continuously, along with severe pain when rotated or moved.
Ø The left leg is numb to about 3 inches above the knee, and the numbness is increasing up the thigh
Ø The right leg’s numbness is traveling up about half-way to the knee.

Ø Currently, I use a brace on my left leg, as it has the famous “MS Drop”, and is unusable.
Ø I have two forearm crutches.
Ø I cannot walk more than 10 feet without assistance; the 10 feet requires “wall walking”.
Ø I have a 3-wheel scooter to use in any distance moving to conserve energy for the “here” and the “there”.
Ø I cannot stand for more than 10 minutes at a time; sometimes this is only 5 minutes.
Ø I do dishes about one time a week; luckily, I can bend and rest against the wall in my new kitchen.
Ø Having moved in with my son and daughter-in-law recently, I have help with household living chores.
Ø I have a pedicure every month, as I cannot take care of my feet properly.
Ø I sit in the shower; air-dry my hair, and normally avoid standing. I have a chair in the bathroom, so that activities can be accomplished sitting down.

Cerebellar
Coordination
Ø My feet are no longer coordinated. It seems that they do not do what I tell them to do. Part of this is the spasticity of the muscles. For example, I can sit, and my leg muscles will jump and twitch all by themselves. In 2003, this spasticity has spread to both legs.
Ø My hands and arms also are not coordinated in major and minor movements.
Ø The biggest coordination problem that I have is the vertigo that comes from my vision problems. Scanning left to right makes me dizzy and nauseous; also, fast movement makes me dizzy, nauseous, and I loose my balance.

Ø As the numbness increased in my right leg, I changed my driving to concentrate on visual cues, as I could not feel the driving pedals. This, coupled with the increasing visual problems (see below) caused me to loose my license effective September 2002.
Ø The lack of coordination in my legs makes standing, walking and climbing difficult.
Ø I find that I can no longer lift much of anything; I have someone else do my bringing in of groceries and the mail.
Ø I no longer cook. Thank goodness for the microwave, fresh fruits and vegetables. Now that I am living with family, I can enjoy home cooked food once again!
Ø The lack of proper hand coordination is a symptom that I find during my typing on the computer. I’ll mix letters; consistently leave out the “o” in you; think one letter, and type another, etc. (It took me 4 weeks to do this matrix. 8 corrections!)
Ø Walking in large open spaces, having to look left and right to avoid traffic makes me want to throw up. I avoid it at all costs.
Ø I do stretching exercises for about an hour each day to work on keeping what coordination I have.
Ø I have continual bruises, cuts and bumps from falls and walking into things.

Brainstem
Includes speech and swallowing
Ø At least once a week I’ll choke while swallowing, and liquid will go down into the lungs.
Ø I consistently wake up at night choking on saliva; or regurgitating.
Ø I am beginning to have problems speaking. My mouth feels like I have mush in it; I consistently forget words.
Ø I follow the Dr.’s instructions, and do not eat raw carrots, peas or rice without liquid to make sure they are swallowed correctly.
Ø I have raised the head of my bed about 6 inches to keep from choking at night. I also sleep on multiple pillows to keep my swallowing working with gravity.
Ø As the face and head become more and more numb, I find that speech, at times, is more difficult than at other times.

Sensory
Includes touch and pain
Ø No one told me that MS causes pain. Well, let me correct that – there is a lot of pain with MS. The best way to describe the overall sensation is that at it’s worst, all of the muscles of the body feel like the worst flu that you ever have had, and NOTHING can make it go away. The headaches, due to the optic nerve problems, result in severe pain at one side of the temple, going across the top of the head, to the other temple. This takes about 12 hours.
Ø Numbness also is a factor. The entire right side of my face is numb about 25-30%. It feels like the Novocain you get from the dentist – but it does not go away. This numbness has increased to cover the entire scalp.
Ø When the nerves don’t adequately “talk” to the muscles, the resulting impact on the muscle is to clench up – like a “charlie horse”. As my abdomen has nerve-muscle problems, any way that I twist results in a severe cramp in the torso.
Ø Another pain that is hard to avoid is bending the chin down, and having electric shocks go down the back.
Ø Any prolonged position (over 15 minutes) will cause the muscles and joints to cramp.
Ø I used to take advil (up to 4 extra strength tablets at a time) for the pain. At the bad times, this amount of medication didn’t even phase the level of the pain. What is almost worst is the “dull toothache” overall pain every night when I try to go to sleep. Now that I take Vioxx for the pain, it offers some relief. The Baclafen for the spasticity offers some help, at least during the day. I don’t twitch and “jump” all day through. Trying to sleep is another matter. It takes about 3-4 hours each night to get the muscles to relax to get to sleep – MS form of insomnia! Then, once asleep, I DO NOT want to get up – the MS fatigue factor.
Ø After the move to the new home, I went for a week without Vioxx. The muscle pain and cramps and joint pain (like the worst arthritis ever) came for days.
Ø The abdominal cramps make going to the bathroom a daily exercise in pain and anxiety. More than once I have cried in pain in the bathroom until the pain stoped. More than once I have fallen off of the toilet (once even sticking to the toilet seat, and landing on the bathroom floor still on the seat) just trying to wipe my bottom.
Ø The muscle pains are still such that I no longer stand in the shower; I do not bother with make-up, as I can’t hold my arms up long enough to apply it. I have a “wash and wear” hairdo.
Ø I’ve mentioned before that the right side of my face/head is partially numb. Two examples of the impact of this are: 1) if I pinch my right ear lobe, I can “feel” it for up to 10 minutes. 2) I must wear earrings that I know won’t fall out, because I cannot feel the earring in the right ear. As of January of 2003, this numbness has spread to cover the entire face and scalp.
Ø The arms now are becoming numb, and it hurts to lift anything without assistance.

Bowel
Impaired function
Ø Bluntly, the anus muscle no longer closes, nor does it “clench” to push out the fecal matter.
Ø Balancing a diet to keep regular – not too hard and not too runny is a daily challenge.
Ø The Doctors have told me that at some point, I will have to “train” my bowels to work at the same time each day.
Ø It takes about 30-45 minutes for each bowel movement.
Ø I wear pads, and need to change often. Any laugh, sneeze, cough, bend will cause the bowels to release.
Ø Forget about controlling flatulence – one just avoids food that will cause it.
Ø Wiping and trying to remain hygienic has led to the constant presence of hemorrhoids and continual cuts and pain. I tried zinc oxide and Aveeno, with limited success. My Doctor prescribed Calmoseptine, and it appears to work better. I use it 2-3 times each day.
Ø I take daily stool softeners to remain regular.

Bladder
Impaired function
Ø I never thought that one could have incontinence and “failure to empty” at the same time! Now I know that you can.
Ø Balancing having enough liquids without spending all the time in the bathroom is a consistent challenge.
Ø When I first started having to go to the bathroom 4-5 times each night, then fought to get back to sleep, I took Ditropan. This left me drier all right – I didn’t have enough “spit” left at all! Also, it led to nosebleeds from dry sinuses. So, I stopped taking that medicine.
Ø Thanks to the continual pads that I wear, I catch leaks.
Ø Going to the bathroom takes about 5 minutes. One has the urgency until you sit on the toilet. Then, you go through gymnastics to get the urine to come out. I realize that daily catheterazation is on the horizon.
Ø I have learned that laughing and coughing always cause leakage.
Ø It becomes a daily challenge to ensure that body odors are properly “managed”.

Visual
Impaired function
Ø When I had my first optic neuritis attack, the Doctor said that I had a migraine, without the headache. Now I know what they are, and can better manage them.
Ø In 1998, I had my eyes checked, and new glasses prescribed; within 6 weeks, my vision had so deteriorated that I could no longer see. Going back to the Eye Dr., I needed a completely new prescription, and trifocals. He sent me back to my Neurologist, who did the Spinal Tap.
Ø “Black holes” in my vision are scary, but manageable.
Ø Double vision, the inability to focus on things near or far, problems with depth perception, night blindness are all daily challenges for me to manage.
Ø As indicated above, balance, dizziness and nausea also are daily if not hourly occurrences.

Ø Up until about 3 years ago, I was able to read 3-4 books each week. I still love reading, but I need to balance close-in vision with far vision. If I try to read too much, or look in the far distance too much, I risk the dreaded nausea and/or headache. I still read – just much, much less than before. I also have to reread pages as my “logic retention” is not as great as it once was.
Ø My driving ended when, coupled with the leg numbness and incoordination, visual blackout frequencies continued, making driving hazardous.
Ø The visual challenges often trigger panic attacks. If I get too hot, too tired, upset, or anything emotional, the vision “holes” come, followed by headaches. I’ve come to identify headaches as my body’s way of saying SLOW DOWN! Cold showers; a cold wash cloth; music and a darkened room with time seem to be the only relief here.
Ø I no longer go to the movies very often (once a year); the motion on the wide screen makes me violently nauseous.
Ø When watching TV, I cannot watch any action – it is too hard for my eyes to follow, and I get instantly dizzy and nauseous.
Mental
Impaired memory and cognitive functions
Ø I often forget names, words, trains of thought. This irritates me, which can lead to anxiety attacks.
Ø Any task requiring multi steps, I now avoid with a passion.
Ø If you look at my home, you’ll find stick-it notes all over the home to remind me of things.
Ø I have developed strict patterns of behavior to avoid having to “remember” things. For example, the telephone and the TV remote must stay in the same place, so I won’t find them in the refrigerator by using my cell phone to call my home phone to locate it.
Ø I no longer watch movie rentals, as I can’t figure out how to work the VCR. One of my children helps reset the clocks at home every 6 months.
Ø Similar words present problems. Work and word for example; “Country Squire” and “Country Singer” were the challenges last night (I love watching A&E’s mysteries). Tuesday and Thursday are often mixed-up for me. If I am not careful, the alarm clock will be set for PM when I need AM; etc.

Other

Includes any other neurological findings attributable to MS (fatigue; sleep problems; aversion to heat, depression, panic attacks, social issues, etc.)
Ø FATIGUE is a huge factor for me. Up until about 5 years ago, I routinely could work 70-80 hour work weeks; take care of the home; raise two kids; and still have time and energy to get involved in social and volunteer situations. Today, just the thought of getting out of bed is hard; emptying the dishwasher takes 3 - 10 minute tasks. Forget doing the dishes!
Ø The irony with the fatigue is that for SLEEP it is coupled always (at least for me) with insomnia! No matter what I do, even when I take 2 more Baclafin tablets 1 hour before bedtime, it will take me 2-3 hours to fall asleep each night! Then, I cannot seem to wake up in the morning.
Ø HEAT – I cannot stand heat! I have twice “passed out” from not monitoring the heat level of my body. I’ve now learned, and have a “cooling vest”, many fans, and with the move, have central air conditioning!
Ø As can be seen in other documents provided, I am an extremely positive person. Before I went to See Dr. XXXX, my Neurologist in 1997, I went through some difficult personal times (1993-1997). Depression hit me in a big way, as did panic attacks – the first that I had ever had. I tried to talk myself out of them, and when my thoughts turned to suicide, I went to Dr. ZZZZZ.
Ø Social Issues crop up, and must be managed. It is too easy to become a hermit.

Ø Dealing with the MS fatigue has been very hard for someone like me, likened to a “heat-seeking missile” when focused on a task! If I were to give in to the fatigue, I would never get out of bed! Just the though of writing a check is hard and seems like it’ll take too much effort. As an example: On mornings when I shower, even though I sit in the shower, and do not “mess” with “doing” my hair, I have to sit for at least an hour to regain my energy before proceeding to the next task.
Ø The fatigue is such that you CANNOT ignore it. If I push my limits, the flu-like symptoms that I get are so bad that they are the “10” level on my pain scale, and NOTHING can take the ache in every muscle of the body away!
Ø Learning to “manage” the fatigue; to balance the insomnia; and to make sure that the bills get paid, the groceries picked up every now and then – all of this has become my full time “job”.
Ø I’ve learned through research that when the myelin has been impacted, the nerves have to work many multiple times to get the “message” to the muscles. Hence, trying to “cool the body down” takes away whatever little energy I have even faster. On hot days I become a mole – a cool dark room; lots of water, slow to no movements, and survive! (The new home has central air!)
Ø Depression and panic attacks, I learned, are real, and one cannot just “talk oneself” out of them. Dr. ZZZZZ prescribed Paxil in 20mg pills. These worked wonders up until I started taking the Avonex. Finding out that the MS was real; that I would be having to inject myself with Avonex on a weekly basis – Dr. ZZZZZ upped the Paxil level to the 40 mg pill level. I cannot express in words how devastating this disease is. No one can tell you what to expect; how the symptoms will progress; what to do to manage. AND, company STD and LTD plans are not easy to understand and manage!
Ø I set a goal to do something social once a week – even if it is just a face-to-face activity with friends.



Bottomline: As of Date of Completion, (the date of this update for Your Company LTD) my week day and week-end days have become pretty much the same. Up between 11 am and 1 pm. Then rest; shower, meal, 10 minute chores and rest. Now that I am in the new home with family, there is help with chores like groceries, laundry, changing the bed, house cleaning, and bill paying - (greatly appreciated!). Nap in the afternoon; music, some reading, some TV; dinner; lots of fruit, vegetables, and liquids. Between 11 pm and midnight, I usually go on the computer to answer email messages, and to assist folks with disabilities through “Ask the Expert, on About.com. Attempt to go to sleep about 2-5 am; toss and turn until the muscles stop aching and twitching enough to get to sleep. I have learned how to go to sleep with music, or to the drone of the television (alarm set for 30 minutes). Final note: As an indication of my mental capabilities change, I had to have my son proof read these documents, after I typed and proofed them myself up to 7 times. He found many errors – particularly the kind where the left-right hand word error could occur (i.e., seft instead of left; work instead of word;).



This is the Disease-specific symptom Matrix that has been completed by the Author, Ms. Magura.


This matrix describes the Body’s Basic Functional Systems based on the Expanded Disability Status Scale (EDSS); the impact Multiple Sclerosis has had on Your Name’s body; and how the limitations impact her daily normal activities. This matrix has been updated for Your Company LTD, effective April 2003. (Written and edited by Your Name) This scale, like the other matrixes, were also provided to SSA as evidence for SSDI.

Body
System
What it Covers
How MS Symptoms have Impacted
Your Name
How MS Symptoms Impact
Your Name’s Daily Normal Activities
UPDATED TO YOUR DATE OF COMPLETION

Pyramidal
Ability to walk
Ø My left foot has been numb since about 1985; the right foot since about 1999.
Ø Both feet have the “pins & needles” sensation continuously, along with severe pain when rotated or moved.
Ø The left leg is numb to about 3 inches above the knee, and the numbness is increasing up the thigh
Ø The right leg’s numbness is traveling up about half-way to the knee.

Ø Currently, I use a brace on my left leg, as it has the famous “MS Drop”, and is unusable.
Ø I have two forearm crutches.
Ø I cannot walk more than 10 feet without assistance; the 10 feet requires “wall walking”.
Ø I have a 3-wheel scooter to use in any distance moving to conserve energy for the “here” and the “there”.
Ø I cannot stand for more than 10 minutes at a time; sometimes this is only 5 minutes.
Ø I do dishes about one time a week; luckily, I can bend and rest against the wall in my new kitchen.
Ø Having moved in with my son and daughter-in-law recently, I have help with household living chores.
Ø I have a pedicure every month, as I cannot take care of my feet properly.
Ø I sit in the shower; air-dry my hair, and normally avoid standing. I have a chair in the bathroom, so that activities can be accomplished sitting down.

Cerebellar
Coordination
Ø My feet are no longer coordinated. It seems that they do not do what I tell them to do. Part of this is the spasticity of the muscles. For example, I can sit, and my leg muscles will jump and twitch all by themselves. In 2003, this spasticity has spread to both legs.
Ø My hands and arms also are not coordinated in major and minor movements.
Ø The biggest coordination problem that I have is the vertigo that comes from my vision problems. Scanning left to right makes me dizzy and nauseous; also, fast movement makes me dizzy, nauseous, and I loose my balance.

Ø As the numbness increased in my right leg, I changed my driving to concentrate on visual cues, as I could not feel the driving pedals. This, coupled with the increasing visual problems (see below) caused me to loose my license effective September 2002.
Ø The lack of coordination in my legs makes standing, walking and climbing difficult.
Ø I find that I can no longer lift much of anything; I have someone else do my bringing in of groceries and the mail.
Ø I no longer cook. Thank goodness for the microwave, fresh fruits and vegetables. Now that I am living with family, I can enjoy home cooked food once again!
Ø The lack of proper hand coordination is a symptom that I find during my typing on the computer. I’ll mix letters; consistently leave out the “o” in you; think one letter, and type another, etc. (It took me 4 weeks to do this matrix. 8 corrections!)
Ø Walking in large open spaces, having to look left and right to avoid traffic makes me want to throw up. I avoid it at all costs.
Ø I do stretching exercises for about an hour each day to work on keeping what coordination I have.
Ø I have continual bruises, cuts and bumps from falls and walking into things.

Brainstem
Includes speech and swallowing
Ø At least once a week I’ll choke while swallowing, and liquid will go down into the lungs.
Ø I consistently wake up at night choking on saliva; or regurgitating.
Ø I am beginning to have problems speaking. My mouth feels like I have mush in it; I consistently forget words.
Ø I follow the Dr.’s instructions, and do not eat raw carrots, peas or rice without liquid to make sure they are swallowed correctly.
Ø I have raised the head of my bed about 6 inches to keep from choking at night. I also sleep on multiple pillows to keep my swallowing working with gravity.
Ø As the face and head become more and more numb, I find that speech, at times, is more difficult than at other times.

Sensory
Includes touch and pain
Ø No one told me that MS causes pain. Well, let me correct that – there is a lot of pain with MS. The best way to describe the overall sensation is that at it’s worst, all of the muscles of the body feel like the worst flu that you ever have had, and NOTHING can make it go away. The headaches, due to the optic nerve problems, result in severe pain at one side of the temple, going across the top of the head, to the other temple. This takes about 12 hours.
Ø Numbness also is a factor. The entire right side of my face is numb about 25-30%. It feels like the Novocain you get from the dentist – but it does not go away. This numbness has increased to cover the entire scalp.
Ø When the nerves don’t adequately “talk” to the muscles, the resulting impact on the muscle is to clench up – like a “charlie horse”. As my abdomen has nerve-muscle problems, any way that I twist results in a severe cramp in the torso.
Ø Another pain that is hard to avoid is bending the chin down, and having electric shocks go down the back.
Ø Any prolonged position (over 15 minutes) will cause the muscles and joints to cramp.
Ø I used to take advil (up to 4 extra strength tablets at a time) for the pain. At the bad times, this amount of medication didn’t even phase the level of the pain. What is almost worst is the “dull toothache” overall pain every night when I try to go to sleep. Now that I take Vioxx for the pain, it offers some relief. The Baclafen for the spasticity offers some help, at least during the day. I don’t twitch and “jump” all day through. Trying to sleep is another matter. It takes about 3-4 hours each night to get the muscles to relax to get to sleep – MS form of insomnia! Then, once asleep, I DO NOT want to get up – the MS fatigue factor.
Ø After the move to the new home, I went for a week without Vioxx. The muscle pain and cramps and joint pain (like the worst arthritis ever) came for days.
Ø The abdominal cramps make going to the bathroom a daily exercise in pain and anxiety. More than once I have cried in pain in the bathroom until the pain stoped. More than once I have fallen off of the toilet (once even sticking to the toilet seat, and landing on the bathroom floor still on the seat) just trying to wipe my bottom.
Ø The muscle pains are still such that I no longer stand in the shower; I do not bother with make-up, as I can’t hold my arms up long enough to apply it. I have a “wash and wear” hairdo.
Ø I’ve mentioned before that the right side of my face/head is partially numb. Two examples of the impact of this are: 1) if I pinch my right ear lobe, I can “feel” it for up to 10 minutes. 2) I must wear earrings that I know won’t fall out, because I cannot feel the earring in the right ear. As of January of 2003, this numbness has spread to cover the entire face and scalp.
Ø The arms now are becoming numb, and it hurts to lift anything without assistance.

Bowel
Impaired function
Ø Bluntly, the anus muscle no longer closes, nor does it “clench” to push out the fecal matter.
Ø Balancing a diet to keep regular – not too hard and not too runny is a daily challenge.
Ø The Doctors have told me that at some point, I will have to “train” my bowels to work at the same time each day.
Ø It takes about 30-45 minutes for each bowel movement.
Ø I wear pads, and need to change often. Any laugh, sneeze, cough, bend will cause the bowels to release.
Ø Forget about controlling flatulence – one just avoids food that will cause it.
Ø Wiping and trying to remain hygienic has led to the constant presence of hemorrhoids and continual cuts and pain. I tried zinc oxide and Aveeno, with limited success. My Doctor prescribed Calmoseptine, and it appears to work better. I use it 2-3 times each day.
Ø I take daily stool softeners to remain regular.

Bladder
Impaired function
Ø I never thought that one could have incontinence and “failure to empty” at the same time! Now I know that you can.
Ø Balancing having enough liquids without spending all the time in the bathroom is a consistent challenge.
Ø When I first started having to go to the bathroom 4-5 times each night, then fought to get back to sleep, I took Ditropan. This left me drier all right – I didn’t have enough “spit” left at all! Also, it led to nosebleeds from dry sinuses. So, I stopped taking that medicine.
Ø Thanks to the continual pads that I wear, I catch leaks.
Ø Going to the bathroom takes about 5 minutes. One has the urgency until you sit on the toilet. Then, you go through gymnastics to get the urine to come out. I realize that daily catheterazation is on the horizon.
Ø I have learned that laughing and coughing always cause leakage.
Ø It becomes a daily challenge to ensure that body odors are properly “managed”.

Visual
Impaired function
Ø When I had my first optic neuritis attack, the Doctor said that I had a migraine, without the headache. Now I know what they are, and can better manage them.
Ø In 1998, I had my eyes checked, and new glasses prescribed; within 6 weeks, my vision had so deteriorated that I could no longer see. Going back to the Eye Dr., I needed a completely new prescription, and trifocals. He sent me back to my Neurologist, who did the Spinal Tap.
Ø “Black holes” in my vision are scary, but manageable.
Ø Double vision, the inability to focus on things near or far, problems with depth perception, night blindness are all daily challenges for me to manage.
Ø As indicated above, balance, dizziness and nausea also are daily if not hourly occurrences.

Ø Up until about 3 years ago, I was able to read 3-4 books each week. I still love reading, but I need to balance close-in vision with far vision. If I try to read too much, or look in the far distance too much, I risk the dreaded nausea and/or headache. I still read – just much, much less than before. I also have to reread pages as my “logic retention” is not as great as it once was.
Ø My driving ended when, coupled with the leg numbness and incoordination, visual blackout frequencies continued, making driving hazardous.
Ø The visual challenges often trigger panic attacks. If I get too hot, too tired, upset, or anything emotional, the vision “holes” come, followed by headaches. I’ve come to identify headaches as my body’s way of saying SLOW DOWN! Cold showers; a cold wash cloth; music and a darkened room with time seem to be the only relief here.
Ø I no longer go to the movies very often (once a year); the motion on the wide screen makes me violently nauseous.
Ø When watching TV, I cannot watch any action – it is too hard for my eyes to follow, and I get instantly dizzy and nauseous.
Mental
Impaired memory and cognitive functions
Ø I often forget names, words, trains of thought. This irritates me, which can lead to anxiety attacks.
Ø Any task requiring multi steps, I now avoid with a passion.
Ø If you look at my home, you’ll find stick-it notes all over the home to remind me of things.
Ø I have developed strict patterns of behavior to avoid having to “remember” things. For example, the telephone and the TV remote must stay in the same place, so I won’t find them in the refrigerator by using my cell phone to call my home phone to locate it.
Ø I no longer watch movie rentals, as I can’t figure out how to work the VCR. One of my children helps reset the clocks at home every 6 months.
Ø Similar words present problems. Work and word for example; “Country Squire” and “Country Singer” were the challenges last night (I love watching A&E’s mysteries). Tuesday and Thursday are often mixed-up for me. If I am not careful, the alarm clock will be set for PM when I need AM; etc.

Other

Includes any other neurological findings attributable to MS (fatigue; sleep problems; aversion to heat, depression, panic attacks, social issues, etc.)
Ø FATIGUE is a huge factor for me. Up until about 5 years ago, I routinely could work 70-80 hour work weeks; take care of the home; raise two kids; and still have time and energy to get involved in social and volunteer situations. Today, just the thought of getting out of bed is hard; emptying the dishwasher takes 3 - 10 minute tasks. Forget doing the dishes!
Ø The irony with the fatigue is that for SLEEP it is coupled always (at least for me) with insomnia! No matter what I do, even when I take 2 more Baclafin tablets 1 hour before bedtime, it will take me 2-3 hours to fall asleep each night! Then, I cannot seem to wake up in the morning.
Ø HEAT – I cannot stand heat! I have twice “passed out” from not monitoring the heat level of my body. I’ve now learned, and have a “cooling vest”, many fans, and with the move, have central air conditioning!
Ø As can be seen in other documents provided, I am an extremely positive person. Before I went to See Dr. XXXX, my Neurologist in 1997, I went through some difficult personal times (1993-1997). Depression hit me in a big way, as did panic attacks – the first that I had ever had. I tried to talk myself out of them, and when my thoughts turned to suicide, I went to Dr. ZZZZZ.
Ø Social Issues crop up, and must be managed. It is too easy to become a hermit.

Ø Dealing with the MS fatigue has been very hard for someone like me, likened to a “heat-seeking missile” when focused on a task! If I were to give in to the fatigue, I would never get out of bed! Just the though of writing a check is hard and seems like it’ll take too much effort. As an example: On mornings when I shower, even though I sit in the shower, and do not “mess” with “doing” my hair, I have to sit for at least an hour to regain my energy before proceeding to the next task.
Ø The fatigue is such that you CANNOT ignore it. If I push my limits, the flu-like symptoms that I get are so bad that they are the “10” level on my pain scale, and NOTHING can take the ache in every muscle of the body away!
Ø Learning to “manage” the fatigue; to balance the insomnia; and to make sure that the bills get paid, the groceries picked up every now and then – all of this has become my full time “job”.
Ø I’ve learned through research that when the myelin has been impacted, the nerves have to work many multiple times to get the “message” to the muscles. Hence, trying to “cool the body down” takes away whatever little energy I have even faster. On hot days I become a mole – a cool dark room; lots of water, slow to no movements, and survive! (The new home has central air!)
Ø Depression and panic attacks, I learned, are real, and one cannot just “talk oneself” out of them. Dr. ZZZZZ prescribed Paxil in 20mg pills. These worked wonders up until I started taking the Avonex. Finding out that the MS was real; that I would be having to inject myself with Avonex on a weekly basis – Dr. ZZZZZ upped the Paxil level to the 40 mg pill level. I cannot express in words how devastating this disease is. No one can tell you what to expect; how the symptoms will progress; what to do to manage. AND, company STD and LTD plans are not easy to understand and manage!
Ø I set a goal to do something social once a week – even if it is just a face-to-face activity with friends.



Bottomline: As of Date of Completion, (the date of this update for Your Company LTD) my week day and week-end days have become pretty much the same. Up between 11 am and 1 pm. Then rest; shower, meal, 10 minute chores and rest. Now that I am in the new home with family, there is help with chores like groceries, laundry, changing the bed, house cleaning, and bill paying - (greatly appreciated!). Nap in the afternoon; music, some reading, some TV; dinner; lots of fruit, vegetables, and liquids. Between 11 pm and midnight, I usually go on the computer to answer email messages, and to assist folks with disabilities through “Ask the Expert, on About.com. Attempt to go to sleep about 2-5 am; toss and turn until the muscles stop aching and twitching enough to get to sleep. I have learned how to go to sleep with music, or to the drone of the television (alarm set for 30 minutes). Final note: As an indication of my mental capabilities change, I had to have my son proof read these documents, after I typed and proofed them myself up to 7 times. He found many errors – particularly the kind where the left-right hand word error could occur (i.e., seft instead of left; work instead of word;).



#4 LTD Key: Before and After Matrix

This Matrix is the Blank Matrix Template to be used to describe your “Before and After”.

DATE OF COMPLETION

The following matrix describes a “typical” day/week in the life of Your Name before the multiple symptoms of Multiple Sclerosis, and at this point of time: Date of Completion. This matrix will be (and has been) updated as needed. The last update was (whenever. Use this statement only when this is a follow-up document.)



Activity/
Timeframe

1996 until 4-13-00
(Similar work times 1990-1996)
Daily Activities as of
Date of Completion
Monday through
Friday, daily
activities











Weekends









Typical “Job” Duties






This is the completed example of a Before and After Matrix to use as a reference.

DATE OF COMPLETION

The following matrix describes a “typical” day/week in the life of Your Name before the multiple symptoms of Multiple Sclerosis, and at this point of time: Date of Completion. This matrix will be (and has been) updated as needed. The last update was (whenever. Use this statement only when this is a follow-up document.)

As of Date, I have changed my living arrangements. I purchased a home with my son and daughter-in-law. The home has a separate “mother-in-law” apartment. This arrangement allows me greater assistance in my day-to-day living, as indicated below.

Activity/
Timeframe

1996 until 4-13-00
(Similar work times 1990-1996)
Daily Activities as of
Date of Completion
Monday through
Friday, daily
activities
Ø Arise 6:00 am
Ø Leave for work 6:45 am
Ø Work from about 7:15 am until about 6:00 pm, straight through. Meals taken at desk or in a meeting.
Ø During the evening on work days, there always seemed to be an “event” of some sort. Keeping up with the kids; teaching at the Shipyard from 4:00 pm to 10:00 pm three nights a week for a 10-week session, 5 times; teaching at Portland State once or twice a quarter; professional meetings; Church-related meetings (Small Group Ministry; etc.). If no event, time on the computer/Internet, or catching up on reading for work.
Ø Sleep at about 10:00pm.
Ø Arise between 11:00am and 1:00pm.
Ø Prepare and eat a meal. Take medications; and perform stretch exercises. Every other day, take a shower in a specially equipped shower with a stool; safety bars; water direction assistance, etc. Taking a shower and recovering from same can take up to one and one-half hours.
Ø Nap between 4:00pm and 6:00pm.
Ø I lost the ability to drive effective September 1, 2002. My PCP (Primary Care Physician), Dr. ZZZZ and I decided that, because of the numbness of both of my legs, coupled with my increasing visual problems, it was no longer safe for me to drive.
Ø Evenings: reading, music, watching TV, and checking the Internet for information that could assist in my areas of interest.
Ø Between Midnight and about 2:00am I can be on the Internet, answering questions for others with disabilities on a volunteer basis. Typing takes much longer, now, as sometimes the wrong key is hit (i.e., when I want the e, the o comes; the p becomes a w; etc.)
Ø 2-3 hours per day devoted to “daily normal living” activities. These have been adequately discussed in the companion document entitled "Company LTD Claimant Questionnaire; Completion Date”.
Ø Paying bills is a big chore, as it taxes my cognitive and memory skills. Changing the sheets on the bed can take hours, as the activity can be accomplished in only 10 minute intervals.
Ø I begin to try and sleep between 2:00am and 5:00am. I toss and turn until muscles relax. The medication taken helps somewhat, but it still takes about 2 hours to be able to go to sleep.
Ø Sleep is interrupted each night about 4-5 times to go to the bathroom, and to get a sip of water because of the “choking” problems associated with what I now know is “mild Dysphagia”.
Ø As I now live in a daylight basement, the temperature can be regulated to keep cool. The new home has central air. This change will greatly assist in coping with heat in the summers.
Ø My feet are continually freezing; I can be in short sleeves and shorts, and have to wear socks!
Ø As my right leg is becoming as numb as the left, I am careful, and use my two forearm crutches when walking.

Weekends
Ø 4-6 hours of office work, either at the office, or at home.
Ø Socialize at least one night each weekend. This could be just with friends; with a Church social group (i.e., Presbyterian Mariner’s group); a movie, something.
Ø Church each Sunday morning.
Ø Part of each weekend shopping at one or more of the malls. I loved just walking in the mall, browsing, going to the music and bookstores, looking at people. Didn’t need to acquire anything, just looking.
Ø Grocery shopping.
Ø Cleaning home (two stories). During this timeframe, I also refurbished the entire house.
Ø I attempt to keep the volunteer and/or mentoring to only 4 days per week, late at night.
Ø Saturday and Sunday mornings are just the same as week-days.
Ø It takes the entire weekend to do laundry and cleaning, in 10 minute intervals.
Ø I’ve changed my habits to ordering books, music, and clothes over the TV and the Internet (Amazon.com).
Ø I have learned how to get groceries over the Internet. Safeway delivers to the home. Sunday night appears to be the best time to order.
Ø To ensure I do not fall, I sit in the shower, and have someone else do my toenails (the toes are so numb, the feet need care). (See the LTD Questionnaire for more information.)

Now that I am living with the kids, it will be easier to ensure that there is food in the house, and that the bills are paid. Also, I will be able to ensure that my medications are always available. This is a very important development in my life. For a week, I was not able to obtain my medications. It was quite a shock! I have learned to “manage” my symptoms to allow me to live as great a life as I can. However, without my medications, I felt that I had the worst case of influenza that I ever had! I ached in every muscle, including my earlobes; coupled with this, severe arthritis in every muscle and joint! For example, my hands cramped so badly, that I could not grip anything, and could not type on the computer, hold a toothbrush, or dial a phone. NEVER WANT TO EXPERIENCE THIS AGAIN!

Typical “Job” Duties
Ø In the late 1980’s, I was the VP-HR for the Pacific Northwest’s largest Savings and Loan.
Ø From there I went to a large Manufacturing company, as a Plant HR Director, and a corporate Benefits Director.
Ø My next job, in the mid-‘90’s was as VP-HR for an investment company.
Ø From 1994 - early 1996 I was a Senior Consultant with a Human Resources consulting company. One of my clients was 1234 Company, the Portland Shipyard (a privately owned, 100 million $/year company). I worked at the Shipyard from July 1996 until I joined Cascade as VP-HR in May of 1997. I retained that position until I went on LTD 4-13-00.
Ø As a “Type A” personality, my jobs always have required 55-60 hours of work per week. This time commitment increased at the Shipyard. We have anywhere from 500-2,500 employees at any one time, and from one day to the next. We have 11 unions. I supervised up to 25 employees, and started the first Human Resources Department that the Shipyard had ever had, in over 100 years of operations!
Ø I was responsible for, and/or did all the work for Employee Relations; Labor Relations; compensation; benefits; Workers Compensation (averaging 300-400 incidents per year). We had a Training Center, on site that was my responsibility. I also personally handled all of the Employment litigation. This meant representing Cascade in court and other legal/labor proceedings.
Ø Each day was crammed full of meetings, crises, activities, etc.
Ø The job required extensive patience, experience, maturity, tact, expertise, and the ability to remain calm in the middle of multiple crises.
Ø The day I knew that I had to cut back will remain always in my mind: I had a Craft Manager and his Union Business Agent and Shop Steward in my office, very agitated; I had the Safety Director and an employee out in the hallway; I had the Executive VP for Production on my cell phone; and I had the Owner on my land line (phone). All were talking (yelling) at me at once. Now, this was typical, but for the first time I froze; I could not multi-task effectively to provide the customer service to all of these clients in the manner that they deserved. My vision left (big black holes in my right eye; “heat waves” in my left – Optic Neuritis); my MS had reached the stage that I was too tired and too befuddled to effectively manage the work. I set in motion the process to lead to LTD.

Ø The computer work is great, as I can work for 15-30 minutes, take a break, read some, and get back to it – correcting all of my typing errors! Also, I have a large computer screen to assist in the visual problems. I find that by changing my “up close” reading/typing with my watching TV or looking out my back yard window at the garden helps with the vision.
Ø I do Internet searches for information.
Ø The Volunteer work falls into the following categories:
1. MS Chapter Committees. I am on the Government Relations and the Employment Committees of the Portland, OR MS Chapter. This work requires occasional meetings (I participate via a telephone conference call now, without a car); reading and responding to emails; keeping up to date, primarily through the Internet, about what’s going on in the employment world.
2. Volunteer “Expert” on disability and other related issues. I am a volunteer expert; I receive about 2 or so questions every week. Most of the time they can be easily answered. Some, like the one I am working on now, require research and 2 or three times to respond. To date, I have assisted up to 98 folks.
3. Because of my helping others, and because I have been on Avonex (weekly IM [inter-muscular] injections) for 4 years, I have been interviewed for an article in the Spring 2003 edition of the BIOGEN magazine entitled “The Avonex Alliance”. In this article, I have been interviewed as a Mentor; I recommend that others use matrixes like this to assist their doctors in their care.
4. My long term goal is to work with Insurance companies to change the nature of STD and LTD plans to provide company discounts to companies who hire the disabled and the retired; to work with all disability organizations to form a coalition and work together for their constituents, and not to compete with each other for funds; to get the local, state and federal governments to offer tax breaks to companies to hire the disabled and the retired; and, to allow the disabled and the retired to work longer and continue to feel valued in whatever they do.
5. As the honorary “Executive Vice President” for A Company., I have the opportunity to add value to work as a “mentor”; as an experienced person who has “been there, done that”. Often, I can assist Executives and Managers over the phone with employee relations issues. I have no financial interest in the company; I do, however, receive satisfaction in that I am still a contributing adult, and not just an “ill person”!



In general, I’m listening to my body, and trying to do what is right for me. I have enclosed the last two physical “updates” that I provide to my Doctors with each visit.



The other significant change is that I was granted SSDI coverage, as you know. This was a significant success, in that I have been told that I am still the only person in the my area who was granted coverage the first time, in under 30 days! The 2001 issue of this matrix, along with other documents were of significant value in obtaining this coverage.