THOUGHT FOR A DAY, SAT.NOV.21,2009 - COGNITIVE IMPAIRMENT - Personal - http://maxpages.com/happymspage/Thought_for_the

COGNITIVE IMPAIRMENT SAT. NOV. 21,2009

This is another invisible symptom that is particularly difficult for children to understand. The most common being memory & concentration problems. Its really an overall slowing of our thought processes. Learning & remembering new information, maintaining concentration (one of my problems), organization & problem solving skills. Children, as well as adults, interpret forgetfulness as "not listening" or "not caring". This makes children feel hurt & angry & the parent feeling frustrated & misunderstood.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPACT OF A PARENT'S ILLNESS ON CHILDREN, PART 3, FRI. NOV.20,2009

Many parents can't physically do things such as walking their child to school, bike rides, participates in sports. This makes both the parent & child disappointed. Both may even show anger over not being able to do these things. Enlisting the help of a relative or friend can help. They now can have someone to participate in sports with them, but also have an eager person in the stands cheering for them.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPACT OF A PARENT'S ILLNESS ON CHILDREN,PART 2,THURS. NOV.19,2009

As with anyone, symptoms that children can see are easier to understand than non visible ones. Fatigue is one that is often interpreted as laziness. From talking to different people, I found out that children of a parent with MS, are more sensitive to the needs of others. Many children think since the parent is no longer working, that they are resting all day & should be able to do things with them after school. The kind of fatigue that we feel is different from that of just being tired but difficult for all, especially children to understand.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPACT OF A PARENT'S ILLNESS ON CHILDREN, WED. NOV.18,2009

Children who have a seriously ill parent are definitely at more risk for physical, emotional & social problems. They can be emotional stress, behavior problems, some have a low self esteem & social competence than those with healthy parents. Believe it or not, whether its mom or dad whose ill, naturally the age of the child & how much they can understand. I feel its important for a child to have a good relationship with the well parent. If they need someone to talk to, it does make things easier.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IS IT WISE TO HAVE CHILDREN, PART 2, TUES. NOV. 17,2009

Prospective parents with MS, have more things to consider. Exacerbations, various disease outcomes, the child developing MS. Most women show no signs of MS during pregnancy, but after the birth MS can escalate. It does not matter to her that most women do well, she still has to deal with her own situation. The vast majority of children of MS parents do not develop it, but should one child develop MS, they still have to cope. Couples have to be prepared for what the future may bring.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IS IT WISE TO HAVE CHILDREN, MON. NOV. 16, 2009

Many people, with MS in the picture, question whether its wise to have children. I had asked my neurologist the same question. He told me if I really wanted to, I should go for it. I did, but it never happened. Both husband & wife have to be willing to change roles if it became necessary. Here again its necessary to have good communication. If there is any doubt on either party, the answer is no.

Don't forget to do something nice for yourself each day.

Eileen(Lobosgirl)

FIVE WAYS TO CARE FOR YOUR IMMUNE SYSTEM, SUN. NOV.15,2009

Eat a well balanced diet, foods high in fiber. Be active as much as you can. I know many of us can't do some things, but there are exercises that we can all do, even if we are bedridden. Try to manage your stress. Your emotional state has an impact on your overall health.
Get enough sleep. Good sleep is necessary for physical & mental health. Connect with others physically. By this I mean, a hug or handshake, some kind of intimacy can enhance your mood & may help strengthen your immune system.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

MS THERAPY:IMMUNE FRIENDLY OR NOT?, SAT. NOV.14,2009

Its important to know that the goal of MS therapy is to modify or make changes within the immune system to reduce relapses & help manage MS. The last thing any of us want when fighting MS is a compromised immune system. When deciding on treatment for your MS, be sure to talk with your doctor about the impact of your treatment on your immune system & overall health.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

THE IMMUNE SYSTEM,MS&YOU PART 3, FRI. NOV.13,2009

We might think of the white blood cells & certain proteins as surveillance teams. They patrol the body, identify invaders, deploy special repair cells to the scene. This response is known as inflammation. The inflammatory response activates & mobilizes teams of immune cells that mount an attack, regulate or control inflammation & bring the immune response to a close once the threat is resolved.
This is why we want to keep our general health in the best condition. We don't need any more problems.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

THE IMMUNE SYSTEM, MS & YOU PART 2,THURS. NOV. 12,2009

The main cells involved in protecting your body are white blood cells which travel throughout the body in the bloodstream, lymph nodes, spleen & other areas. WBC are also known as immune cells, are actually a collection of many different cells that work together inside your body to identify & destroy invaders, such as bacteria, viruses etc. Its actually the body's defense patrol.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

THE IMMUNE SYSTEM, MS & YOU, WED. NOV.11,2009

It's important to be knowledgeable about the immune system, its your body's natural system of defenses. This is because the immune system plays a key role in your disease, your treatment choice, & is an essential part in your overall health. We think of MS as a disease of the Central Nervous System. I will go into this much further tomorrow. Just wanted to give you some food for thought.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

STRENGTHEN YOUR COGNITIVE SKILLS PART 2,TUES. NOV.11,2009

Cognitive function changes are very common in people with MS. They involve memory, attention, concentration, & information processing, with memory the most reported cognitive issue. Brain stimulation is helpful. Action based games, puzzles, reading, conversation & video games. Challenging your mind on a routine basis can help you stay on top of your game.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

STRENGTHEN YOUR COGNITIVE SKILLS, MON. NOV. 9,2009

Many people today are playing video games, either online or games at home. These games help test & improve your powers of concentration & recall. Using a virtual set of cards representing missing items, players are asked to match up pairs of identical cards, while tracking the time it takes to make all the matches. As you do this over & over again, you can see your progress & attain personal best scores.You can see how it really helps as you find clues to help you in your personal life.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

FAMILY PLANNING & MS PART 2, SUN. NOV. 8,2009

The diagnosis of MS makes the choices & decisions that surround childbearing somewhat more complicated. MS is often diagnosed during early adulthood, when individuals & couples are in the midst of major career & family decisions. By its very nature, MS adds to the usual uncertainty & unpredictability of life. Plans that had been taken for granted are suddenly called into question, new fears & doubts can create a high degree of stress & anxiety.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

FAMILY PLANNING & MS, SAT. NOV. 7,2009

Most couples want a family, a major event. When MS is in the picture, there are many decisions that have to be made. In making these decisions, each member of a couple gradually takes shared or primary responsibility for certain roles as breadwinner, household manager, primary caregiver to the children. No couple knows for sure what the future holds, but hope & assume that it will turn out as planned. With MS in the picture, things must be looked on a lot more closely.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

ROLE OF EFFECTIVE COMMUNICATION PART 2, FRI. NOV. 6,2009

One thing that I found out with my husband, was that we really had to listen to what each of us was saying. If you don't really listen, or observe each others body language before responding, you don't really get the message which can make things worse. These are skills that every couple should learn, not just for our sexual happiness but life in general, if things are going to work out. If we do listen, we can offer empathy which is needed to have a pleasurable relationship. It has helped me, & I'm sure will help you.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

ROLE OF EFFECTIVE COMMUNICATION, THURS. NOV. 5,2009

One of the most important things we can do in dealing with body image & emotional changes is good, ongoing communication with one's partner. Exploring new options, disappointments & expressing what partners feel & want may be difficult while coping with all the other changes associated with MS. MS peer groups, couples and/or individual or couples counseling can help the communication process. If we don't talk about things, we don't know whats on each other's minds.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

MS RELATED EMOTIONAL CHALLENGES PART 2,WED. NOV.4,2009

Changes in self esteem & body image can come from having a chronic illness such as MS. They are often accompanied by a grieving process that tends to go up & down over the course of the disease. Also, the demanding & unpredictable course of MS can lead to stress & anxiety which sometimes causes partners to take the frustrations out on each other. This is a time when partners need the most support & a time when its very hard to give it.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

MS RELATED EMOTIONAL CHALLENGES, TUES. NOV. 3,2009

MS experience is frequently associated with emotional challenges, including grief & sometimes clinical depression. These struggles often dampen interest in sex or the ability to give & receive sexual pleasure. Coping with emotional changes to enhance sexuality has several aspects, assessment, education & coping interventions. There are medications for clinical depression, preferably by someone familiar with MS. Some may not feel its worth it to go through all this trouble. Why not!!! We can't let MS take over our lives.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

CHANGING ROLES, PART 2, MON. NOV. 2,2009

When one partner is also a caretaker, its hard sometimes to interchange roles of caretaker & lover. The well person feels that their partner may be too fragile or easily injured, or as a "patient" who is ill & therefore unable to be sexually expressive. When caretaking must be done by the sexual partner, it can be hard separating caretaker activities from times that are dedicated to romantic & sexual activities. Sometimes there can be a feeling of isolation in the relationship & less understanding of the partner's struggles. These feelings have to be worked on.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

CHANGING ROLES, SUN. NOV. 1, 2009

Changes in family roles, because of MS, can affect one's capacity for intimacy & sexuality. Whichever partner has MS who has difficulty doing his/her designated work & household roles sometimes makes them no longer feel like an equal partner. Some feel overburdened by additional caregiving, household & employment responsibilities. Their intimate relationship can be threatened by the tension that can result from these feelings.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

SELF IMAGE & BODY IMAGE, SAT. OCT. 31,2009

This affects men & women, but women are particularly susceptible to having a negative body image. If you think about it, with all the diet products, the media's picture of women being thin, the cosmetics industry etc. all trying to make women feel good. We try to have a good sexual image, with MS in the picture its difficult to enjoy our sensual & sexual nature & the MS related physical changes. Similar pressures affect men, who feel they are aggressive & powerful, are at odds with the illness experience. Men sometimes feel an internal sense of failure because of the MS.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IS MANAGED CARE GOOD OR BAD,FRI. OCT.30,2009

My own feeling is that the effectiveness of managed care for people with MS will depend on the degree to which patients & their families believe that they have access to the kind of treatment & support they need in order to manage their symptoms & live comfortably with MS. A close working relationship between primary care physicians & MS specialists has worked in the past, but will it continue to flourish under managed care. An alternative to comprehensive care in MS, is the MS specialist provides ongoing care but uses the primary care physician's expertise in (non-MS) medical areas. I think it is important for us to make our feelings known to insurance companies, who seem to have a big say (& many times not the right one) in dealing with a chronic illness such as MS.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPLICATIONS OF MANAGED CARE IN MS PART3,THURS.OCT.29,2009

Unfortunately, the new emphasis is on how to provide care at a lower cost. Financial responsibility for many services is being shifted from the insurers to the healthcare providers, their patients & their families. Those of us with reduced access to an MS specialist need an even greater understanding of the issues related to MS & its management & must work closely with the primary care physician. Primary care physicians need to expand their expertise in areas such as MS, but how many are?
Most of us are paying high premiums for insurance & still getting stuck for a large portion of the expenses. Everyone should get the correct care no matter what. It is unfair to have to live with a disease & not get the right care.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPLICATIONS OF MANAGED CARE IN MS PART 2, WED.OCT.28,2009

The rules I discussed yesterday, vary from one insurance co. to another. Typically they require patients to choose from a list of physicians & use their primary care physician for access to speciality care. As a result, the primary care physician, rather than the patient or family, decides when its necessary to see a specialist. This is very unfair in my book. We have a specific disease which has specific needs. Many of them can only be gotten from a specialist. If necessary or because we want it, should be able to have ongoing care from a specialist, not just a limited number of visits.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

IMPLICATIONS OF MANAGED CARE IN MS,TUES. OCT.27, 2009

Interactions between doctors & their patients are being redefined in the face of the growing need to cut costs. Managed care is a system for organizing large numbers of providers within a single corporate structure, hoping to provide quality services to patients while controlling costs. In traditional healthcare, the patients choose the doctors they want (something I feel most of us want) I know I do. The insurance co. pays for all or part of the visit. In managed care, the health organization contracts with providers to provide services to patients enrolled in their insurance plans. You must abide by the rules of the plan & possibly not be reimbursed.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

THE HEALTHCARE TEAM, MON. OCT. 26,2009

In conclusion with comprehensive care, the healthcare team can help families deal with MS in their lives without allowing their personal & family needs to be totally submerged by the disease. Family members are encouraged to pursue personal goals & maintain outside interests & activities so they don't feel like hostages to MS. Spouses & elderly parents experience guilt over their own good health. The healthcare team does a great job in lessening this guilt by supporting people's need to maintain an independent life beyond MS. Both my parents had Alzheimer's disease
so they never knew how bad my MS could be. Something I am grateful for.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

COMPREHENSIVE CARE IN MS PART 5, SUN. OCT. 25,2009

The educational process for the family has to be an ongoing process. Information that did not hold any interest in the early stages of their MS, may suddenly take on new meanings as medical, economic or social changes occur. The family definitely has a central role in this comprehensive MS care. Each family experiences its own reactions to the diagnosis of MS in one of their members. Each member is encouraged to express their own sadness & anger over this intrusion into family life. They will not be able to support the patient with MS if they are overwhelmed by their own reactions.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

COMPREHENSIVE CARE IN MS PART 4, SAT. OCT. 24,2009

I feel a healthcare team is important since they can also begin to help the entire family with the coping & adjustment process. They also seem to have more time than many of the doctors. They are very good at assessing the family's strength & resources, their ability to cope with a chronic illness, especially at the early months.
Learning how to use our strengths to cope with the challenges that may arise. What is good for one family is not good for another. The goal is to provide a menu of options so that families can choose what is most useful for them.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

COMPREHENSIVE CARE IN MS PART 3,FRI. OCT.23,2009

In the past, many healthcare practitioners , tended to respond only to losses & negative events. Many of us with MS are lucky to find MS Healthcare Clinics, where there is a MS healthcare team. As soon as a diagnosis is made, the teams begins to educate the patient about managing the symptoms & preventing unnecessary complications. For example, the patient (& family members) learn the indication(s) for a specific treatment, the expected results, & any possible side effects.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

COMPREHENSIVE CARE IN MS PART 2,THURS. OCT.22,2009

MS centers that provide comprehensive care for patients & their families have emerged over the past 20 yrs. In addition to the physician, the team usually consists of a nurse, physical therapist, occupational therapist, speech language pathologist, psychologist, & social worker. Although the members of the team each tend to focus on different aspects of patient & family care, they share the important goals of education, disease management & support.

Don't forget to do something nice for yourself each day.

Eileen (Lobosgirl)

Thoughts for tommorow and beyond

If the next move by who ever wins the election for being president succeeds
in installing a national health program ,don't expect it to be any better than medicare is now.It seems we have the highest medical costs in the world among industral countries.
Medicare is cutting back every year.
New Mobility reports it is getting very difficult to get good durable objects like wheelchairs that you might want and not heavy clunkers that will wear you out.In other words if you had your heart set on a ultralight weight wheelchair that weighs about 20 pounds,expect to pay for it yourself.
Being severely disabled is hard enough without having to constantly fight the government for something durable that is easy to use.

What is normal for us in the MS community?

Normal for us in the MS community is we all know there is much difference in our progression rates.We all will loose some mobility, some will loose faster than others.
I know people with PPMS that are using a wheelchair full time in the first 4 years after dignosis,But some like myself with PPMS I have had a very slow but constant rate of progression and still use both wheelchair or scooter and also crutches and braces daily.
Betaseron seems to help me and I'm still on it since starting when it came on the market.
Some are even luckier yhan me in that their disability has been minor and almost stationery in motion and very little lose in distance they can walk
I enjoy hearing from others with Ms so keep those e-mail letters coming to me ,Richard
at RET1000@aol.com But it is safer for me in a chair than trying to walk and its quicker.

Now days I enjoy my seated position better than over trying to walk with wobbly and weak legs.My doctor says at least try to do some walking with your crutches and braces each
day as you really need to be vertical at least a total of 1 hour a dayis more than I can now take .
RET New update April 11,2008
So I spend about ten minutes at a time several times a day.That is about all I can stand.

Heading into real life for most progressive MSers could be challenging

We had to stop thinking of ourselves as being regular people like our neigbors living accross the street or next door to us.The do golf, play tennis , drive long distance and etc. things that would be as out of the question for many of us as we expect to cross the intire state with a moped ,a distance of maybe 180 mile here in Florida.The moped isn't up to such strain nor are we.
It also might be compaired to doing a marathon of 26 miles such as is being held this month in either Boston or NYC .I don't know about you but a marathon of 26 miles in one day would be a serious strain for me in the best power wheelchair.Going at a speed of 5 miles per hour I would still be very fatigued and probably fall asleep at the joy stick after the second or third hour.
Now the Physiatrist would say The equipment prescribed isn't going to make you equal to an athletic,just able to do a sometime trip within reason to fit your disability.
Once I thought I could if I had the money do a round the world cruise of 105 days
They take very good care of you on a cruise but the fatigue level even with my scooter on my last 15 day cruise was all and then some when matched to my body strength.
Primary progressive MS is like haveing a huge anchor attached to you.
Richard April 22,2008
May 14,2008
I don't think the organized MS societies expect any repair cue too soon.The experts that write these columes in their publications still are telling us in wheelchair or using rollators that we have usful assistive devices and they will help us to get about and save energy.
Richard

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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Page Updated Fri Nov 20, 2009 6:25pm EST