Progressive MS Support Blog

Learn more about progressive MS and how to cope with it.
1/14/06

Levels of Disability

KURTZKE EXPANDED DISABILITY STATUS SCALE

   
.0 Normal neurological exam.
      1.0 Patient is fully ambulatory.
      1.5 No disability.
      2.0 Minimal disability of 1 of 7 Functional Systems (FS).
      2.5 Minimal disability in 2 FS.
     
3.0 Fully ambulatory.  Moderate disability in 1 FS or mild disability
in 3 or 4 FS.
     
3.5 Fully ambulatory.  Moderate disability in 1 FS and mild disability
in 1 or 2 FS or moderate disability in 2 FS or mild disability in 5 FS.
     
4.0 Fully ambulatory without aid, self-sufficient, active 12 hours a
day despite relatively severe disability.  Able to walk without aid or rest
for about 500 meters.
     
4.5 Fully ambulatory without aid, active much of the day, able to work
a full day.  May otherwise have some limitation of full activity or require
minimal assistance.  Characterized by relatively severe disability.  Able to
walk without aid or rest for about 300 meters.
     
5.0 Ambulatory without aid or rest for about 200 meters.  Disability severe enough to impair full daily activities.
     
5.5 Ambulatory without aid or rest for about 100 meters.  Disability severe enough to limit full daily activities.
     
6.0 Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk about 100 meters with or without resting.
     
6.5 Constant bilateral assistance (canes, crutches or braces) required to walk about 20 meters without resting.
     
7.0 Unable to walk beyond about 5 meters even with aid.  Essentially restricted to a wheelchair.  Wheels self in standard wheelchair and transfers alone.  Active in wheelchair about 12 hours a day.
     
7.5 Unable to take more than a few steps.  Restricted to wheelchair. May need aid to transfer.  Wheels self but cannot carry on in standard wheelchair a full day.  May require a motorized wheelchair.
     
8.0 Unable to walk at all, essentially restricted to bed, chair or wheelchair but may be out of bed much of the day.  Retains many self-care functions.  Generally has effective use of the arms.
     
8.5 Essentially restricted to bed much of the day.  Has some effective use of arm(s).  Retains some self-care functions.
     
9.0 Helpless bed patient.  Can communicate and eat.
     
9.5 Totally helpless bed patient.  Unable to communicate effectively or eat/swallow.
     
10 Death due to Multiple Sclerosis.(generally uncontrolled infection, kidney failure, respiratory failure, pneumonia or uncontrolled seizures)
 
1/11/06

What is Progressive MS?

 
When people hear the term "Multiple Sclerosis" they generally think of people who have relapses ,  followed by periods of remission. This form of the disease is called Relapsing Remitting MS (RRMS)and is the most common form of the illness. When people have a relapse, they have an exacerbation of the illness (often called 'attacks or 'flares') they may have partial to full symptoms of blindness, paralysis and disability or varying degrees. Once the 'attack' is over, there is often a complete or partial recovery of function, this is the remission phase of the disease. With partial recovery some symptoms or disabilities remain. With each new attack, and recovery there are additional worsenings, therefore in this manner RRMS is a progressive disease by way of accumulation of disability. That is, becoming a little more disabled with each relapse/remission period. It may take many years or in many people, not at all, to become seriously disabled requiring a wheelchair. Some people can go into prolonged states of remission where there is little or no disease activity.

There are at present 3 types of progressive MS. These are Primary Progressive, Progressive Relapsing and Secondary Progressive (with and without exacerbations).  There is also  a 4th which is a "category" rather than a type - this is called "Transitional Progressive" and is used by some researchers and some neurologists.

Primary progressive ms, is often thought of as the most severe form in the sense that from onset to total disability is the shortest time span. However, even within this category there are differences in both rate of progression and severity of progression.

Research has shown that MRI results indicate that people with primary progressive MS often have far more lesions and more widely spread throughout the CNS than any of the other types of MS - including SPMS.

PPMS is characterized by an increasing steady decline in motor and often cognitive abilities. There is none of the characteristic "remissions" as experienced by people with RRMS. At best there may be experienced a "plateau" where the individual does not get any better but for a time at least the current symptoms do not worsen. A plateau is usually short lived before the illness resumes the progressive process. Once symptoms appear they generally continue to become increasingly more frequent and severe.

For example, one may experience some "different" kinesthetic sensations - in other words feelings on the skin of the hands, arms, feet, legs etc., which the person describes as "unusual". These sensations over time may become more pronounced and are often identified as "tingles", then further along as "pins and needles". Sometimes the feelings then progress to either pain or numbness or both.

For other folks or even other areas of the body in the same person, the symptoms may begin as numbness or tingles or pins and needles - it depends on the extent of damage and location of damage to the myelin coating and or nerves themselves. Another example is with the arms or legs may feel "heavy" or swollen at first, then become increasingly unresponsive and may become paralyzed.

How quickly this all occurs differs from one person to another and even for an individual and while some situations, such as prolonged illness, intense stress or exhaustion, may hasten the process, no one is quite certain why. For example, some individuals, from diagnosis to total disability may be as quick as 2 years, others 4, or 10 or more.

Where the worst of the progressive symptomology appears, depends on where the lesions are located within the CNS. Naturally spinal lesions will result in a greater motor deficit. Because PPMS results in both a greater quantity of lesions and more widespread disbursement, people with PPMS accordingly show a greater range of symptomology than people with RRMS do.

That is, the most common symptoms reported by people with ms are fatigue, numbness, tingling, pins and needles, cramps, spasms, visual problems, memory problems and difficulty with concentration and attention, spatial orientation and coordination, bowel and bladder and sexual dysfunction. For people with RRMS, they may experience some of those symptoms, for PPMS folks they almost all develop all of the symptoms at some time. Consequently, total disability follows as more deficits occur.

Of all the types of MS, PPMS is the least common type and depending on who or what you read, the percentage changes also - for example 5% to 10% of all people are diagnosed PPMS.

While there are many drugs and treatments being trialed, there is to date no known totally effective treatment for PPMS. It is hoped that with the continued research that a drug or combination of drugs may be useful in halting or slowing the progression.

There have been some encouraging results with the use of chemotherapy (for example Cytoxan) and steroidal treatments in slowing the progression in some people. The theory for using chemotherapy is that MS is assumed to be caused by an over active immune system. By depleting the white blood cells, it is hoped that the immune response will either not occur, or not occur with as great a response. Therefore, minimizing the damage and slowing the progression of the disease.

TPMS

Transitional Progressive MS (TPMS) is a term sometimes used by researchers as the period of time during which a person is progressing from Relapsing Remitting MS (RRMS) to SPMS. Exacerbations still occur, however, rather than a complete or partial recovery with the symptoms remaining constant, the person begins to progress. Symptoms/disabilities "gained" in the exacerbation continue to worsen rather than remaining static. This period of transition may last weeks, months or most commonly 2 years.

SPMS
Secondary progressive MS (SPMS) is characterized by a pattern of Relapsing Remitting MS in the beginning. This may last for quite some years or only 2 years...again no one is able to predict how long a person may remain RRMS before progressing to SPMS.

Approximately 40 to 50% of the relapse remit type of MS sufferers go on to become secondary progressive. It is also not known what triggers cause the cessation of remission and the onset of the progression of the disease. Once an individual becomes SP, the pattern of symptoms, severity and disability is similar to that of Primary Progressive (for people without exacerbation).

People with SPMS who also have exacerbations do not have a remission period after exacerbations and show a pattern of progression between exacerbations.

If there is an "upside" to SPMS compared to PPMS, it is that it may take years of relatively uncomplicated, able living with the RR pattern before the onset of progression. Again it must be noted that people do vary in their rate of progression and severity of disability. Also the quantity and severity of relapses and time between "flares or attacks" also varies.

With the advent of the ABC drugs, it is hoped that less people will progress to SPMS, and that the deterioration and increase in symptomology will also be alleviated somewhat through treatment. In other words we hope that researchers may develop treatments to drastically slow the disease and thus increase the quantity of life while increasing the quality for the individuals.

New studies have also shown that the sooner an individual with SPMS is treated with Betaseron, the greater the potential there is to slowing the progression and subsequent disability.

PRMS
PRMS or progressive relapsing ms (like PPMS) is a relatively rare form of the disease. The individual is initially diagnosed as having PPMS and as much as up to 10 years later, may have an exacerbation.  It is characterized by the similar pattern of severe exacerbation, such as blindness or paralysis that people with RRMS experience. However, rather than returning to full recovery of functioning with some residual symptoms - such as tingles, numbness, as is the case with RRMS, the folks with PRMS show a pattern of progression between exacerbation's. It is probably best understood as being like PPMS only with the major exacerbations of RRMS

 
1/10/06

About Our Group

A group of us with all forms of Progressive MS ( progressive relapsing; secondary progressive, primary progressive multiple sclerosis)from all over the world gathered together to form this, our own Progressive MS community in 1998. All of the staff in our forum are volunteers who all have progressive MS or who care for someone with progressive MS.

The members of our group are quick to comfort, to laugh, to share and care. We all have varying degrees of disability, but whether we use crutches or wheelchairs we all share the same spirit of joy for living.

We are the only website on the entire internet that is exclusively for people with progressive MS or are caring for someone with Progressive MS.

The reason we formed this community is because we had become disillusioned with the majority of websites who seemed to cater for people with relapsing remitting form of the disease, but little understanding of progressive MS.

We found that most of the "educational material" or "information" on other sites is primarily for people with RRMS. Therefore, here and in our forum all of the current research; information articles; advice and support is exclusively about progressive MS - it is gathered from all over the internet and located in our community - saving you hours of "hunting and pecking" looking for more than the standard one paragraph you will usually find.

Also on the many forums and bulletin boards in other internet MS support groups you will generally see that folks with progressive MS are either ignored, get very little support OR worse still get "well meaning" but erroneous and sometimes hurtful advice - but not here - we all have progressive MS or care for someone who does - so we KNOW what you are saying - we UNDERSTAND what you are going through - without the need of lengthy explanation and debate - and we SHARE your struggles.

Our community as a variety of different folders, including up to date research, medications, symptoms etc. We are also very fortunate to have Dr. Ben Thrower - one of the leading specialists in Multiple Sclerosis of all types and Dr Richard Shields - our resident pharmacist specialist- answer questions from our group. We have social workers and a psychologist consultant as well! We also have some folders just for fun - jokes, poetry etc. We also have our own chatroom with regularly scheduled chats.

It is a private community and not open to the general public, membership is by application and exclusive to people with progressive MS, or people who care for a loved one with progressive ms...this is to protect your privacy and confidentiality. However, we do welcome questions in our membership folder from the general public and folk with RRMS.

We are a group of people  who do our best to live well, encourage each other through sharing our struggles with compassion and dignity.

We do not advocate for any particular treatment regime, drug company or treatment. We do our best to help support you to find treatments best suited for you as advised by your doctor.

Alternatively if you have no desires to pursue any treatment at all or just in symptom management your decisions there are also respected and supported 100%.

We believe that each person needs to find their own way on this journey, we are just here to keep each other company to live with dignity, to laugh, to cry, to vent - whatever expression is needed to help each other to get through the day - to live as well as we can.

If you feel that this community of loving, caring, giving people is one which you would like to join, please complete the "application form for membership" - the post is found in the membership folder - just click on this link
http://forums.delphiforums.com/PMSSG

 
About the Author
Lyndy (Lyndy7)Hi My name is Lyndy and I am the host and founder of the Progressive MS Support Group (International), we have been together since 1998. I have Primary progressive MS and use a wheelchair full time and am basically homebound. I do not let my disability get me 'down' as there is so much living to do that is not dependent on my legs - walking is so over rated anyway lol. I am also a volunteer for Delphi and I am a member of the Delphi Forums Community Support Team, as well as Team leader/Coordinator for the Host Mentors team. I have to use my time wisely as chronic fatigue is always a constant companion. I  find something to laugh about in most situations. I am married and have a wonderful care giver husband who gives me the space to be as independent as I can be and helps only where I need it. I have 3 elderly cats . My basic philosophy is that any day above ground is a great day to be lived to the fullest and enjoyed. My second prime philosophy is to treat all folks with dignity and respect regardless of race, color, creed or ability. I love to live and live to love and laugh along the way. Thank you for stopping by, please feel free to leave comments or ask questions about MS, disability or anything that comes to mind! You are welcome here :)
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