emergencies.
Jul 21 – Unconfirmed at this time. Potential topics include constipation, osteoporosis, or podiatry.
Aug 18 – Caring and Sharing
Sept 15 - Doctors Tasha Williams, and Ronald Williams, neuropsychologists, (no relation), will be sharing insights and expertise on Alzheimer's Disease and how it relates to PWP.
May Meeting
This month, Dr. Heidi Musgrave returned to present a program on depression and dementia. She commented on several facts about both maladies. Research finds:
Depression is usually untreated in the elderly.
Depression is not part of the normal aging process.
Depression can delay recovery or worsen outcome of other illnesses.
The diagnosis of depression is usually made with five or more of the following symptoms observed:
Loss of interest in daily life
Appetite change
Weight loss
Fatigue
Difficulty processing
Physical limitations
Thoughts of suicide
Depressed mood
Lack of pleasure in daily tasks
Several items put one at risk of depression. They can be: alcohol, visual impairment, obesity, current medications, psychiatric hospitalization, stressful losses, and family history.
Dr. Musgrave talked about medications that can cause depression. Be alert for steroids, anti-arythmics, anti-convolutants, barbiturates, carbadopa/levodopa, (Think PD anyone?) opioids, and others.
There are differences when diagnosing depression and dementia:
DEPDRESSION DEMENTIA
Slow onset Fast progression
Family recognition Delayed recognition
Very inconsistent diagnosis Consistent symptoms
Admission of diagnosis Denial of diagnosis
Don’t know about it Cover it up
Treatments should all be precipitated by setting goals and expectations of treatment. One should visualize where they want to be over time. There is a need for mood improvement: achieving of a timeline for recovery; resolution of symptoms; the need to get up, get out, and do; and daily exercise for at least 20 minutes.
Recovery can take up to 12 months in three phases: Acute phase -3mo. with a goal of complete recovery: Continuing phase – 5 mo. with a goal to prevent a relapse: Maintenance phase of 4 mo. you prevent reoccurrence.
50% of PWP are affected by depression o dementia. There may be a genetic link. Research is ongoing. Each can be associated with the rapid progression of PD. PWP all react different to anti-depressants. (Sound familiar?) In PWPs depression and dementia are difficult to diagnose: watch for sleepiness, apathy, and lower concentration.
Thanks, Dr. Musgrave, for your efforts in our behalf. We should continue to educate ourselves about our disease and other maladies that may affect us, is paramount in our daily quest to beat PD.
A NOTE FROM DAN SPANGLER
ATTENTION CAREGIVERS… Do you need a break? Are you burning out? Do you need some time to yourself? You may need a TIME OUT. In short, TIME OUT is having someone else handle the caregiving for a while, and you can have peace of mind while you have some time away. Time away can be just hours or even a few days. It’s your call.
TIME OUT is a program sponsored by the Midwest Chapter of the American Parkinson’s disease Association located in Wheaton, IL. Briefly, there are four basic requirements for financial assistance.
• A note of verification from the PWP doctor confirming the PD diagnosis.
• Sign an application confirming the need for the TIME OUT.
• A signed receipt from the TIME OUT provider.
• Membership in the Midwest Chapter of APDA. ($25/yr.)
Financial assistance is limited to $500 per family per 12-month period while funds are available.
Interested in more details? Contact the Midwest Chapter office at 630-933-4392, or call me at 260-486-4893. I have a limited number of TIME OUT applications.
Caregiving can be difficult. I’m sure your PWP would encourage your time away, and appreciate you even more upon your return.
ADDITIONAL EXERCISE CLASS
We are about “maxed-out”, numbers-wise, at exercise class on Wednesdays.
Presently, Turnstone is very seriously looking into expanding the program with a Monday exercise class, at the same time (10:30 A.M.), and in the same place (current meeting room). Final details are not complete, but survey results look promising, and we should know in the very near future. With exercise on two days per week, several options present themselves.
One could attend on Wednesdays only.
One could attend on Mondays only.
One could attend both days.
One could still attend weekly if they miss their regular day.
Hopefully enough would opt for the Monday class, and this would free up space and permit growth at both times. The cost structure is yet to be determined for those attending both sessions.
Check your calendar. We hope to have some good news in the very near future.
TIPS TO MAKE YOUR LIFE BETTER By Ed Gatke
At last month’s meeting Dr. Musgrave spoke about how frequent depression occurs in the person with Parkinson’s (PWP). I was glad that she included that in her presentation because depression is one of the most common symptoms in the disease. If you were fortunate to be there you heard her speak of how depression may be present from the two different causes
First, some of the literature about Parkinson’s disease (PD) says that by the time a person can be diagnosed with it they have lost 60 to 80 percent of their capacity to produce dopamine, one of the chemicals all of us must have to ward off depression. Second, all of us, PWP and those who do not have PD are capable of having depression because of circumstances that we react to. (Thus, this type of depression is often referred to as reactive depression).
Depression can strike anyone, but PWP may be at greater risk. Keep in mind that some PD symptoms (such as masked facial expression, slow movement, and lack of energy) can actually be symptoms of depression and vice versa. But when these symptoms accompany anxiety, apathy, or loss of interest or pleasure in activities and relationships, consider the possibility that you have a treatable mental health concern.
The National Institute of Mental Health lists these as symptoms of depression:
*Persistent sad, anxious, or empty feelings
*Feelings of hopelessness and pessimism
*Feelings of guilt, worthlessness or helplessness
*Loss of interest or pleasure in hobbies and activities
*Fatigue, feeling slowed down, or decreased energy
*Difficulty concentrating, making decisions, or remembering
*Insomnia or oversleeping
*Appetite or weight gain or loss
*Restlessness and irritability
*Thoughts of death or suicide, suicide attempts
*Crying, especially over little seemingly incidental issues
Ask yourself these questions if your feelings (mental and emotional) concern you on a daily basis:
*are you discouraged or sad?
*Are you moody or irritable?
*Are your feelings isolated or lonely?]
*Have you lost interest in activities you can still do?
*Have you pulled away from interactions with friends and family?
*Is your outlook affecting your ability to work, make decisions, or make choices?
*Has your mood affected your sleep (for example, sleeping more in the day or not sleeping at night_ or energy level?
*Have you experienced changes in appetite and weight?
*Have you lost interest in sex or intimacy with your partner?
*Have the people you trust suggested that you seem depressed?
If you answered “yes” to five or more of; these questions, you need to raise the possibility with your doctor that you may need treatment for depression. You have nothing to lose by doing this, and much to gain.
CAREGIVER’S CORNER By Ed Gatke
Last week Friend Wife and I sat down to discuss some of the issues that exist between caregivers and PWP (People with Parkinson's). Like some of our other marital discussions it was not the most positive experience we have had.
My interest in the subject comes from wanting her and me to be on the same page with big issues, at least as far as is possible. Our history has shown that two bull-headed people in one marriage will have those times when we feel we are miles apart on some topics. Sometimes we even get our feelings hurt.
I don't tell you this because I feel a need for a dose of sympathy. Nor do I want you to pick sides and, intellectually at least, decide who was right and who was wrong in what turned out to be another of those verbal encounters that couples get into and try to one-up the other through use of mental gymnastics or superior vocabulary.
I knew from the beginning that I just wanted Friend Wife's help in understanding her side of what happens to us when one or both of us lets the devil get his licks in by approaching us through those tiny but powerful body parts known as our tongues. Jesus' brother James reminded us of what a powerful weapon it can be when misused. My belief has long been that if two people or groups or countries can understand the perspective of the other, they have a much better chance of resolving their differences.
Two things happened during our discussion referred to above. One, neither of us got angry or lost our cool this time. Two, unfortunately, we didn't succeed in solving any issues. For a while I didn't see much gain in that, but as I thought about it, I suppose every time we try to discuss weighty matters and don't start World War III, or walk away angry, we have gained something in the relationship.
What point am I trying to make? Simply this: it is vitally important that we work together to resolve what we can, and have as many positive experiences as we are able. Parkinson's disease is a burden for any family that is unfortunate enough to have a PD experience. We need to stick together and not let it cause us more trouble than is necessary. When you have those heavy discussions I think it helps a lot to decide ahead of time you will not lose your cool, that you will show respect for this one you love, and that you will resolve to continue to try to work together for your mutual good.
James wrote in the third chapter of his epistle: See how great a forest a little fire kindles! And the tongue is a fire...
Editor’s Note: Thank you, Ed, for writing about a personal experience knowing that it would be beneficial for others to read. We appreciate your contribution to the newsletter each month.
The only time I live life in the fast lane, is when I have 12 items or less.
Importance of Positive Emotions for Caregivers
Free Webinar by Janet Edmonson, M.Ed.
Tuesday, June 14, 2011
8:00 – 8:30 p.m. (Eastern Time US)
http://img.gotomeeting.com/g2mimages/webinar/themes/business/button_registerNow.gif
(Please feel free to forward this to anyone that may benefit)
For family and professional caregivers Webinar Description: Janet will describe some of the new research in positive psychology and how positive emotions can help buoy up caregivers in the midst of the difficulties and challenges. She’ll discuss how our mindset and healthier thinking pattern styles can be learned to foster resilience with caregiving responsibilities. This session is an overview of these concepts which are applicable to all caregivers. About Janet: Janet has over 30 years’ experience in the health promotion field. She retired in May 2007 as Director of the Prevention & Wellness for a staff of 20 at Blue Cross Blue Shield of Massachusetts. Since retirement, as President of JME Insights, she is a national inspirational speaker having spoken to over 200 groups. While working full-time, Janet took care of her husband, Charles, during the five years he fought a movement disorder with dementia. Janet wrote about her experience in her book, Finding Meaning with Charles. Janet has a Master’s degree from Georgia State University. She resides in South Portland, Maine. Webinar Format: You may participate in one of two ways:
1. The first viewing method is via access through the internet. You can view the presentation on your computer and listen via your computer speakers or USB headset connected to your computer.
2. The second option would use the internet and a telephone connection. Please note: If you use this second option, you may need to pay applicable phone charges from your telephone carrier.
Once you register, you will receive an email confirming your registration with information you need to join the webinar. For Additional Information: You can contact Janet at janet@janetedmunson.com with any questions you have about participating.
Space is limited. Reserve your Webinar seat at: https://www3.gotomeeting.com/register/942515982
Helping Disabled People in Emergencies
David Alexander
San Casciano in Val di Pesa, Firenze, Italy
Introduction
It is a fundamental principle in the modern world that disabled people should be given the opportunity to participate in modern society with as few impediments as possible. There is no justification for relaxing this principle when emergencies and disasters occur. Nevertheless, handicapped people may encounter physical barriers or experience particular difficulties of communication that prevent them from reacting effectively to crisis situations and stop them from using the facilities and assistance made available to people who are not disabled.
The whole question of how to assist the disabled in emergencies has been roundly overlooked. The body of academic literature on this subject is very small (e.g. Parr 1987, Tierney et al. 1988) and little attempt has been made recently to renew it. Moreover, the subject is seldom a theme at emergency management conferences. Despite this, there are some useful initiatives, such as the Verona Charter on the Rights of the Disabled in Disaster (ULSS20 Verona 2007), some study centres (e.g. the Centre for Disability Studies, University of Leeds, UK--Hemingway and Priestley 2006, Priestley and Hemingway 2006) and some manuals of best practice (e.g. FEMA 2003). However, state-of-the-art reports tend to be damning and to provide a catalogue of inadequate provisions (CID 2004, Tady 2006, White et al. 2004).
The purpose of this article is help redress the balance and encourage positive action. I will discuss some of the broad issues connected with disability in disaster, highlight the problems and indicate some of the solutions.
In the context of civil protection, what is disability?
The classic layman's view of disability is that of a person in a wheelchair who must be manhandled away from danger. In reality the issue is far more complex than that. To begin with there are many forms of disability: the list includes paraplegia, quadriplegia, deafness, blindness and defects of vision, mental illness and retardation, cerebral damage, stroke, senility and dementia, Alzheimer's disease, and, in fact, numerous forms of dependence on personnel, equipment and supplies for support to the vital functions that sustain life. Although old age is not in itself a disability, many very old people are frail and lack mobility, and they may also be ill or susceptible to various diseases and conditions.
In terms of classification, disabilities fall approximately into the following categories: difficulties of personal mobility, inability to see (with possible use of guide-dogs), deafness, problems of communication and articulation of words (as with stroke victims), cognitive disorders, various medical problems, use of life-support systems, people who suffer from intolerance of chemical or environmental substances, psychiatric disorders and panic attacks, and infirmity associated with old age. The list is long and impressive and, of course, individuals may suffer from more than one form of disability. Clearly, the different categories should be associated with a varied catalogue of provisions during emergencies, including transport for people with reduced mobility, specialized means of communication for those with cognitive or speech difficulties, provision of portable or substitute equipment for those who depend on life-support systems, and psychiatric support for those with mental health problems.
Disasters do tend to discriminate against disabled people. For example, in earthquakes, people in wheelchairs cannot take refuge under desks and tables, and neither can they rapidly exit a building down stairs (Rahimi 1993, 1994). People who are deaf or have defects of vision may fail to recognize danger or not hear verbal orders to evacuate (Kailes 2002). Furthermore, people who depend on electrical apparatus (dialysis machines, ventilators, or simply electronic means of communication) may find themselves in difficulty when there are power cuts during emergencies. Finally, all the services offered to people in disasters and crises--transportation for evacuation, shelter, counseling, and so on--need to be made accessible to disabled people.
It should be noted that the problem is not an insignificant one. In Tuscany, central Italy, 16 per cent of the population has some form of disability. Some 54 million Americans and 90 million Indians are counted among the disabled (and the disaster management law of 2005 in India makes no mention of them). At the time of Hurricane Katrina in the Gulf States of the USA, 155,000 residents of the cities of Biloxi (MS), Mobile (AL) and New Orleans (LA) were registered as disabled. By all accounts, many found themselves in dire straits when the hurricane struck. In fact, as 71 per cent of the 1,330 known fatalities in the hurricane were people over the age of 60, there is a clear indication that disabled people were disproportionately affected by the disaster (Tady 2006).
Although 19.3 per cent of the population of the United States--almost one in five citizens--suffers from some form of disability, 80 per cent of emergency managers contacted in a recent study (NCD 2005) had not made any special provision for the disabled in their plans. Indeed, 57 per cent of them did not know how many disabled people there were in their own planning jurisdiction, and only 27 per cent had taken a course offered by the US Federal Emergency Management Agency (FEMA) on dealing with disabled people in disaster. The problem can become acute in a major disaster: for example, on 11 September 2001 a group of disabled people congregated in a room on the 80th floor of the World Trade Center waiting to be evacuated by firemen, but the building collapsed before any of them could be rescued (CID 2004).
We can conclude that major emergencies may put disabled people more at risk than other members of the general population and may impede them and threaten their safety with new barriers. Despite this gloomy picture, there have been more optimistic assessments. For example, Douglas Lathrop, writing in Mainstream magazine in 1994, suggested that "In some ways, disabled people who manage to live with a certain degree of independence are more able to face disaster than people who are not disabled. They have a 'psychological advantage'..." (Lathtrop 2004). That may be so, but we cannot and should not rely on the resourcefulness of disabled people to get them through calamity. Hence, the next section will consider what ought to be done.
Helping the disabled in disaster
In an emergency situation it is comparatively easy not to recognize the type of handicap borne by a particular individual and thus to offer the wrong kind of assistance. Moreover, the organizations that work in disaster tend to be accustomed to think in terms of providing assistance to large groups of people, whereas the disabled have individual needs that cannot necessarily be equated with those of groups. In fact, assisting the disabled in disasters requires, not only particular procedures, but also special preparations and plans tailored to their needs. Individual attention is labor-intensive at a time when manpower is at a premium. However, providing special assistance is one way of showing that, despite their being handicapped, the disabled are full members of society, with all the associated benefits, rights and privileges.
In emergency planning and management it is time to take into account the problems, special needs and points of view of disabled people. For example, most evacuation plans require the ability to walk, drive, see and hear. They should be adapted to the needs of people who cannot do one or more of these things (Kailes 2002).
The experience of being disabled in disaster situations highlights certain needs. For example, there is a question of how to ensure continuity of services for people who depend for support on electricity, the telephone, water supply or other basic services. Disabled people need to know how to manage when disorder and debris are present at home, and what transportation and mobility assistance will be available in disaster situations. They must be informed of how they can be resupplied with basic necessities in emergency situations and there is also a question of how to manage the needs of guide dogs (FEMA 2003).
One report (White et al. 2004) found that there were few if any empirical data on the efficient and safe evacuation of disabled people during emergencies and crises (see Kailes 2002). Moreover, in many places there is a lack of integration and co-operation between the various organizations that work with the disabled and the civil protection community which must plan for and manage emergencies. It is important to start the dialogue, for the issues are complex. No single emergency response strategy is valid for all types of disability. Moreover, the question of how best to assist the disabled in disaster is related to other issues such as providing help to ethnic minority groups, single mothers, and people with special dietary and medicinal needs.
The basic principles of assistance to the disabled in disaster are easy to list. First, procedures and services should be accessible in times of peace and in disaster. Emergency communications should be accessible, comprehensible and reliable. Disabled people's associations should be involved in civil protection activities and in the emergency planning process. Where there is a significant risk of disaster, appropriate preparation, education and training should be carried out for the benefit of emergency responders and disabled people who are at risk. Finally, efforts should be made to sensitize the mass media to their potential role as purveyors of emergency information to the disabled.
A guide to emergency preparedness written specifically for the disabled (FEMA/ARC 2004) recommends that they do three things, if possible. The first is to assess the types of hazard that are present in the workplace and at home. Secondly, they should endeavor to create a support network of at least three people for each site that they habitually frequent. Thirdly, they should estimate their own capacity to respond with self-protective actions in the event of a crisis. In addition, for kinds of disability that are not immediately apparent, it may be helpful to wear a broach or bracelet that identifies the handicap in question. These are examples of a practical approach that can go a long way to improving the safety of disabled people in crisis situations. However, this form of pragmatism is dependent on developing an appropriately positive mindset and attitude in the civil protection community.
Conclusions
As noted above, the academic literature on disabled people in disasters is exceedingly sparse (Parr 1987, Rahimi 1993, Tierney et al. 1988). This appears to be a sign that the problem is being neglected in both intellectual and applied terms. Yet it is clearly an important issue. In the words of Hemingway and Priestley (2006):-
"Disabled people have been made more vulnerable to natural hazards through historical processes of exclusion and impoverishment. As a consequence, their experience of disaster may be more acute and long-standing than non-disabled populations. These effects are accentuated in poor communities throughout the world where disabled people remain amongst the poorest of the poor. Moreover, when disaster strikes, disabled people encounter inequities in access to shelter or relief and are often excluded from full participation in response and recovery."
The idea that because an emergency or disaster is occurring normal rules are suspended should not mean that disabled people are left without adequate assistance. Indeed, it ought to mean the opposite--that efforts to help them are redoubled, and that special consideration is given to their needs on a priority basis. Moreover, crisis conditions should not offer any excuse to violate the dignity of disabled people. It is high time for the plight of the disabled to be considered in emergency plans. This is both a moral imperative and simply a question of justice and equity. It involves knowing where disabled people are likely to be when emergencies occur and ensuring that appropriate services are available to them. It may also involve an element of monitoring to ensure that discrimination does not occur.
In the European Union the publication and signing of the Verona Charter on the Rescue of Persons with Disabilities in Case of Disasters (ULSS20 Verona 2007) is a milestone in the official recognition that here is a problem which must be tackled. The Charter is the culmination of a project that has investigated the plight of the disabled in disaster in various European countries and has thus contributed to the formulation of a clear picture of the problem and its potential solutions. Examples of bad practice may abound (see NCD 2005), but there is every scope to improve matters. To do so would be a sign of civility and an affirmation of rights for people who, despite their disadvantages, are full members of society and are deserving of protection in disaster.
References
CID 2004. Lessons Learned from the World Trade Center Disaster: Emergency Preparedness for People with Disabilities in New York. Center for Independence of the Disabled, New York (see http://www.cidny.org/).
FEMA 2003. Disaster Preparedness for People with Disabilities. US Federal Emergency Management Agency, Washington DC (see www.fema.gov/library/disprepf.shtm).
FEMA/ARC 2004. Preparing for Disaster for People with Disabilities and Other Special Needs. US Federal Emergency Management Agency and American Red Cross Society, Washington DC, 20 pp.
Hemingway, L. and M. Priestley 2006. Natural hazards, human vulnerability and disabling societies: a disaster for disabled people? Review of Disability Studies 2(3): 57-67.
Kailes, J. 2002. Evacuation Preparedness: Taking Responsibility For Your Safety: A Guide For People With Disabilities and Other Activity Limitations. Center for Disability Issues and the Health Profession, Western University of Health Sciences, Pomona, California (see www.westernu.edu/cdihp.html).
Lathrop, D. 1994. Disaster! If you have a disability, the forces of nature can be meaner to you than anyone else. But you can fight back. Be prepared. Mainstream (Nov. 1994), (see www.accessiblesociety.org/topics/independentliving/disaster.htm).
NCD 2005. Saving Lives: Including People with Disabilities in Emergency Planning. US National Council on Disability, Washington DC (see http://www.ncd.gov/).
Parr, A.R. 1987. Disasters and disabled persons: an examination of the safety needs of a neglected minority. Disasters 11(2): 148-159.
Priestley, M. and L. Hemingway 2006. Disabled people and disaster recovery: a tale of two cities? Journal of Social Work in Disability and Rehabilitation 5(3/4): 23-42.
Rahimi, M. 1993. An examination of behavior and hazards faced by physically disabled people during the Loma Prieta earthquake. Natural Hazards 7(1): 59-82.
Rahimi, M. 1994. Behavior of mobility-disabled people in earthquakes: a simulation experiment. Earthquake Spectra 10(2): 381-401.
Tady, M. 2006. Disabled people left behind in emergencies. The New Standard.
Tierney, K., W. Petak and H. Hahn 1988. Disabled Persons and Earthquake Hazards. Monograph no. 46, Institute of Behavioral Science, Program on Environment and Behavior, University of Colorado, Boulder, Colorado.
ULSS20 Verona 2007. Verona Charter on the Rescue of Persons with Disabilities in Case of Disasters. ULSS no. 20, Verona, 17 pp.
White, G., M. Fox, J. Rowland, C. Rooney and S. Aldana 2004. Nobody Left Behind: Investigating Disaster Preparedness and Response for People with Disabilities. Lawrence, Kansas (see www.rtcil.org/resources.htm).
