New Year, Better You

Almost a month into the new year and some people have probably already started dreading making all those new year resolutions that are so popular. I never make them. I decided years ago it puts too much pressure on me to try and be perfect on things I already know I am not going to be able to keep. This year it is all about just trying to better myself in one way or another. In doing so it has changed my whole family and I am just so proud of them and the progress they have made.

I started making some changes the end of last year when I put all my anxiety aside and applied for unemployability through the VA. I was so anxious and nervous but I knew I had to do this. It worked out and I was approved. A huge weight was lifted off my shoulders and now I could focus on other important things in my life. I was able to get a more reliable car for us that we have needed for years and not fear it is going to break down every day. I can now help my 8 year old get the help he needs because he is really struggling to focus in school and is having some issues with his behavior at home.

The biggest change this new year has been in my 17 year old son. Before he was being very disrespectful, would not listen and really had no direction in life. He would pick on his younger brother so much and did not care about anything. He then decided to join the National Guard. He went to one drill weekend and something really clicked with him. He came back with a whole new attitude. He is trying so much harder now to be respectful and do what he is told. He is trying to help his brother which in turn is helping his brother’s behavior. We had a nice talk and he apologized to me and I apologized to him too. I know for him it is not easy having a parent with disabilities. I am proud of the young man he is becoming. I know he will do a great job.

So this new year it may have started out with some low points at times but one of the best points was hearing my son is proud of me. I am going to the gym, not so I can get super skinny but so I keep myself in shape so I am here for my kids and grandkids. My 8 year old is slowly getting his behavior under control with help and I have learned to love myself  disabilities and all. This is going to be a good year.


A Memorial to Ed Roberts, Born January 23, 1939


Do you ever wonder if you will be remembered once you leave this journey called life? There are many that have gone on before us, and family and friends have missed them, but have learned to live a life without their physical presence.  And then there are some special people that have done so much to improve other people’s lives that they are not forgotten but they continue to be remembered for all that they did in this life.  One such man is Edward Verne Roberts.  Born on January 23, 1939, Ed contracted polio at the age of 14.  This illness left him paralyzed from the neck down except for two fingers on one hand and several toes.  He was dependent on an iron lung for the rest of his life.  Still, Ed stepped out of his comfort zone and advanced the world of the Independent Living movement so that today many people with disabilities have the accessibility and availability to live a much more active and inclusive life.  While there are still many barriers in every community that prevent full accessibility, this gentleman, that is considered to be the ‘father of the Independent Living Movement’, helped give courage to those that others tried to hold back because of their disabilities.  At an early age, ‘he gave up thinking of himself as a “helpless cripple,” and decided to think of himself as a “star.”  And a star he was as he self-advocated his causes and earned the respect of not only his peers, but also those in government at the time.  In 1976, newly elected Governor Jerry Brown appointed Ed as Director of the Department of Vocational Rehabilitation, the same agency that had once labelled him ‘too severely disabled to work’.


In our day and age where communication is at our fingertips and information doesn’t need to be studied or memorized to be recollected, but brought before our eyes by just the touch of a screen, I believe that we all, at times, use our sense of speech without putting much thought into how it might affect others. I have been and still am guilty of doing this.  This advance in the technological world that we live in has rapidly changed the way people communicate in so many ways, socially and personally.

Prior to becoming the Systems/Community Advocate at Dakota Center for Independent Living, I hadn’t put much thought into ‘People-first Language’. This is a type of linguistic prescription in English to avoid perceived and subconscious dehumanization when discussing people with a health issue or a disability.  It is ‘disability etiquette’, but it can be applied to any group which is defined by a condition rather than as a people. Rather than using a label or an adjective to define individuals, People-first Language puts the person before the diagnosis and describes what the person HAS, not what the person IS.  I will give you a few examples.  If you say ‘that disabled guy’ or ‘that handicapped person’, you are defining them as their disability or their condition. It is much more appropriate to use terminology which describes the individuals as being diagnosed WITH an illness or disorder.  Putting the person before the diagnosis is the best way to speak of individuals, as it describes what the person HAS, not what the person IS.   Another example: “Do you remember the boy with autism?” It helps the condition define the boy rather than, “Do you remember that autistic boy?” which defines the boy rather than the condition.  Do you see how using that label, or an adjective before the person, defines the person rather than the other way around? “People with disabilities” rather than “disabled people” or just “disabled”. They are all PEOPLE first.  By using such a sentence structure, the speaker articulates the idea of a disability as a secondary attribute, not a characteristic of a person’s identity.  Here is another one:  “Those that are homeless”, sounds better than, “the homeless”.  While there may be some people that are homeless that may have been diagnosed with an illness or a disorder, (that is another whole subject), but when speaking of their current place of dwelling, they are truly ‘people without a home’.

Like I said, while modes of communication today are not as they were even 10 years ago, we must be more cautious with how we speak, being sensitive of others around us and how our language might affect their day, their person. Even though communication may come easy in today’s world, it doesn’t mean that we shouldn’t stay attentive in how we use these vast modes of communication.  Think before you speak. I know it is something that I am always reminding myself to do.

At the Dakota Center for Independent Living, we offer a Disability Etiquette presentation that might be beneficial for the business agencies, social groups, or learning centers. Call us to set up a presentation for your venue. 701-222-3636

January-Alzheimer’s Disease Awareness Month

Alzheimer’s disease (AD), also known as Alzheimer disease, or just Alzheimer’s, accounts for 60% to 70% of cases of dementia. It is a chronic neurodegenerative disease that usually starts slowly and gets worse over time. The most common early symptom is difficulty in remembering recent events (short term memory loss). As the disease advances, symptoms can include: problems with language, disorientation (including easily getting lost), mood swings, loss of motivation, not managing self-care, and behavioral issues.

Alzheimer’s Disease is the term used to describe a dementing disorder marked by certain brain changes, regardless of the age of onset.

Although Alzheimer’s disease is not yet curable or reversible, there are ways to alleviate symptoms and suffering and to assist families. And not every person with this illness must necessarily move to a nursing home. Many thousands of patients especially those in the early stages of the disease are cared for by their families in the community. Indeed, one of the most important aspects of medical management is family education and family support services. When, or whether, to transfer a patient to a nursing home is a decision to be carefully considered by the family.

Over time, however, it follows a progressively more serious course. Among the symptoms that typically develop, none is unique to Alzheimer’s disease at its various stages. It is therefore essential for suspicious changes to be thoroughly evaluated before they become inappropriately or negligently labeled Alzheimer’s disease.

Problems of memory, particularly recent or short-term memory, are common early in the course of the disease. For example, the individual may, on repeated occasions, forget to turn off the iron or may not recall which of the morning’s medicines were taken.  Mild personality changes, such as less spontaneity or a sense of apathy and a tendency to withdraw from social interactions, may occur early in the illness.

As the disease progresses, problems in abstract thinking or in intellectual functioning develop. You may notice the individual beginning to have trouble with figures when working on bills, with understanding what is being read, or with organizing the days work. Further disturbances in behavior and appearance may also be seen at this point, such as agitation, irritability, quarrelsomeness, and diminishing ability to dress appropriately.

The average course of the disease from the time it is recognized to death is about 6 to 8 years, but it may range from under 2 years to over 20 years.

Those who develop the disorder later in life may die from other illnesses (such as heart disease) before Alzheimer’s disease reaches its final and most serious stage.

The reaction of an individual to the illness and the way he or she copes with it also varies and may depend on such factors as lifelong personality patterns and the nature and severity of the stress in the immediate environment.

Warning Signs of Alzheimer’s disease:

  • Confusion with time or place
  • Decreased or poor judgment
  • Difficulty completing familiar tasks
  • Changes in mood and personality
  • Memory changes that disrupt daily life
  • Withdrawal from work or social activities
  • Challenges in planning or solving problems
  • New problems with words in speaking or writing
  • Misplacing things and losing the ability to retrace steps
  • Trouble understanding visual images and spatial relationships

There is no way at the present time to determine who may get Alzheimer’s disease. The main risk factor for the disease is increased age. The rates of the disease increase markedly with advancing age, with 25 percent of people over 85 suffering from Alzheimer’s or other sever dementia.

Other things often noticeable may be depression, severe uneasiness, and paranoia or delusions that accompany or result from the disease, but they can often be alleviated by appropriate treatments.

Alzheimer’s disease has emerged as one of the great mysteries in modern day medicine, with a growing number of clues but still no answers as to its cause. Researchers have come up with a number of theories about the cause of this disease but so far the mystery remains unresolved.

Because of the many other disorders that are often confused with Alzheimer’s disease, a comprehensive clinical evaluation is essential to arrive at a correct diagnosis of any symptoms that look similar to those of Alzheimer’s disease. In most cases, the family physician can be consulted about the best way to get the necessary examinations.

Caregivers are usually family members either spouses or children and usually wives and daughters. As time passes and the burden mounts, it not only places the mental health of family caregivers at risk. It also diminishes their ability to provide care to the diseased patient. Hence, assistance to the family as a whole must be considered. As the disease progresses, families experience increasing anxiety and pain at seeing unsettling changes in a loved one, and they commonly feel guilt over not being able to do enough. The prevalence of reactive depression among family members in this situation is disturbingly high, caregivers are chronically stressed and are much more likely to suffer from depression than the average person. If caregivers have been forced to retire from positions outside the home. They feel progressively more isolated and no longer productive members of society.  The likelihood, intensity, and duration of depression among caregivers can all be lowered through available interventions.

Though Alzheimer’s disease cannot at present be cured, reversed, or stopped in its progression, much can be done to help both the patient and the family live through the course of the illness with greater dignity and less discomfort. Toward this goal, appropriate clinical interventions and community services should be vigorously sought.

While Alzheimer’s disease remains a mystery, with its cause and cure not yet found, there is considerable excitement and hope about new findings that are unfolding in numerous research settings.

The connecting pieces to the puzzle called Alzheimer’s disease continue to be found…