Showing posts with label Parkinson's Disease. Show all posts
Showing posts with label Parkinson's Disease. Show all posts

September 4, 2016

Getting sick of being busy

Dear Bloggers, 
 
My thoughts are spinning through my head as I write this down tears are running down my cheeks. It is very sad how beloved persons are slipping through our fingers. The brain is a strange peace of equipment and it can do strange things. I just drove home from a night shift as my mind was running around in circles.



Thinking about the roller coaster life that I am leading. Outside there is nothing left of the summer weather as rain bashes on my screen and the smell of a died out fireplace enters the car. My wife is having trouble again with her anxiety, our kids went to new schools this week and my mother in law has been taken into care as she is suffering from Parkinson's an Dementia my father in law is not able anymore to take the full day and night care of her. It is pretty tough for both of them. But the home were she stays is giving her good care.


Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

But dementia is a physical illness, too and a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.
 

The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. I think it suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.

When family members understand the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions,” I would say that: “Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care.”
Our mother in law is suffering from Parkinson's disease and to me there are a lot of similarities to Alzheimer's. 


As a teenager, I saw a neighbour decline from Alzheimer's disease. During his final months, he was repeatedly treated for infections and put in restraints or sedated to control agitation.

Seeing my mother in law in that state is so distressing that I will eventually stop taking the grandchildren to visit,” Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating which in turn, often leads to further treatment.


Geriatricians say a large part of the problem is that the patients are unable to make their wishes known. In the absence of a living will, family members often struggle with guilt and are afraid to stop the aggressive treatment because they do not want to be seen as abandoning a loved one in mental decline.Doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care. 
 
When I go there on a Sunday to visit my mother in law and take her for a strawl, I enjoy the home that breathes slowly and reminds me that on the outside of this building the real crazy people are running around in circles. Driving in a full panic state with their SUV with the kids in the back to all kinds of sports. That is why I do not like the pressure were we are under nowadays.


I saw a dear friend a few days ago. I stopped by to ask her how he was doing, how his family was. He looked up, voice lowered, and just whimpered: “I’m so busy… I am so busy… have so much going on.”

Almost immediately after, I ran into another friend and asked him how he was. Again, same tone, same response: “I’m just so busy… got so much to do.”
The tone was exacerbated, tired, even overwhelmed.

How did we create a world in which we have more and more and more to do with less time for leisure, less time for reflection, less time for community, less time to just… be? Welcome to the land of Burn Outs.

This disease of being “busy” (and let’s call it what it is, the dis-ease of being busy, when we are never at ease) is spiritually destructive to our health and well being. It stops our ability to be fully present with those we love the most in our families, and keeps us from forming the kind of community that we all so desperately crave.


Since the 1950s, we have had so many new technological innovations that we thought (or were promised) would make our lives easier, faster, simpler. Yet, we have no more “free” or leisurely time today than we did decades ago.
For some of us, the “privileged” ones, the lines between work and home have become blurred. We are on our devices. (getting the bended neck syndrome) All The Freaking Time. Smart phones and laptops mean that there is no division between the office and home. When the kids are in bed, we are back online.


The reality looks very different for others. For many, working two jobs in low-paying sectors is the only way to keep the family afloat. Twenty percent of our children are living in poverty, and too many of our parents are working minimum wage jobs just to put a roof over their head and something resembling food on the table. We are so busy.

The old models, including that of a nuclear family with one parent working outside the home, have passed away for most of us. We now have a majority of families being single families, or where both parents are working outside the home. It is not working. It is modern slavery to pay all the bills from the tax office etc.



It doesn’t have to be this way.
I am not asking how many items are on your to-do list, nor asking how many items are in your inbox. I want to know how your heart is doing, at this very moment. Tell me. Tell me your heart is joyful, tell me your heart is aching, tell me your heart is sad, tell me your heart craves a human touch. Examine your own heart and explore your soul, and then tell me something about your heart and your soul.


Tell me you remember you are still a human being, not just a human doing. Tell me you’re more than just a machine, checking off items from your to-do list. Have that conversation, that glance, that touch. Be a healing conversation, one filled with grace and presence.


We need a different relationship to work, to technology. We know what we want: a meaningful life, a sense of community, a balanced existence. It’s not just about “leaning in” or faster iPhones. We want to be truly human.
How exactly are we supposed to examine the dark corners of our soul when we are so busy? How are we supposed to live the examined life?


Somehow we need a different model of organizing our lives, our societies, our families, our communities. I want my kids to be dirty, messy, even bored and learning to become human. I want us to have a kind of existence where we can pause, look each other in the eye, touch one another, and inquire together:


Let us insist on a type of human-to-human connection where when one of us responds by saying, “I am just so busy,” we can follow up by saying, “I know, love. We all are. But I want to know how your heart is doing.”

The Old Sailor,

May 3, 2013

When is it time to give up the keys?


Dear Bloggers,

This blogs subject is about driving and Parkinson's Disease

As baby boomers age and life expectancy rises, increasing attention is turning on how to determine when and if older people and people with severe health problems should stop driving. This topic is especially important in light of a agtng group in our country as a lot of them are on the search for injury prevention and we should get in control that our elderly people are involved by vehicle injuries. As the number one cause of injury related deaths for people aged 65 to 74, and the number two cause (after falls) of injury

related deaths for those aged 75 to 84. The issue that hits home for people with Parkinson's since both the symptoms of the disease and the medications designed to ease them can affect driving ability. If you are struggling with the decision of whether or not to stop driving, or if you are a caregiver for someone who is wrestling with this problem, this blog may help you explore your options.
 
 
How does Parkinson's disease affect driving?

People with Parkinson's disease may eventually experience a decline in both motor skills and cognition. These problems can make driving unsafe. For example, a decrease in visuospatial skill. Let me explain:This is the kind of skills that are necessary to determine distance and distinguish shapes which is not uncommon in Parkinson’s Disease. A driver with decreased visuospatial skills may be unable to gauge the distance to a stop sign or a traffic light or keep a car in the correct lane. Some people with Parkinson's also may have cognitive difficulties and at times become confused. 


Unfortunately, patients with dementia may not realize that their driving has become a problem and must rely on a physician, family members and friends to bring it to their attention. Another common symptomatic problem for people with Parkinson's is muscle tightness, which can make reacting quickly difficult. Delayed reaction time is dangerous because drivers need to be able to react swiftly, both mentally and physically, to avoid accidents and adapt to changing traffic patterns.

Additional complications come from the medications that are used to treat Parkinson’s Disease. Common medications including carbidopa/levodopa (Sinemet), amantadine, dopamine agonists and anticholinergics may produce side-effects such as sleepiness, dizziness, blurred vision and confusion. Anticholinergics are especially dangerous as they can cause confusion and sedation along with memory impairment. However, not every patient experiences these side-effects and they may be decreased with simple adjustments in dosage. You should note any changes and report these to your physician. It is your life and you decide.


 Assessment options for people with Parkinson's

It is important to remember that while not every person with Parkinson's experiences problems with driving, disease symptoms and treatments can make driving dangerous for you and others. Driving is seen as a priveliged right of independence and freedom and you may be reluctant to stop, but being responsible is also important. To help you determine your driving risk, the medical association advice is to report your Parkinson’s at CBR (the Dutch bureau for driving licences) Especially for older drivers with difficulties in traffic and they can give extensive information about diseases that may affect driving ability, such as Parkinson's. Although these guidelines were developed primarily for doctors, it will help laypersons to make their own assessment of their driving ability and determine a course of action.





The question is: “Am I a Safe Driver?” If you just take a driving lesson just to help you evaluate your driving. If you score poorly on this and you are still reluctant to stop driving, refer to the driving school to get some tips for safe drving and really consider speaking with a doctor about the issue. The doctor can run some tests on cognition, mobility, reaction time and visual ability for physicians to perform on patients to determine if a person is driving safely. Yes you might not only kill yourself but also someone else!

A less costly, although less thorough, option is to enroll in a driver safety class, such as the driving  schools are offering to elderly people. While these classes are not specifically tailored for people with Parkinson's, they can provide helpful tips for safe driving. An instructor will lead the class through various ways of enhancing driving skills and safety but often will not make individual assessments.
Finally, you can always visit the CBR and ask to take a driving test. Of course, if you were to fail the test, your license would be revoked.


What can family members and friends do to help?

Understandably, most people are reluctant to give up the opportunity to drive. Because of this, it is often up to family members and caregivers to spot a problem first. If you are a family member or caregiver for a person with Parkinson's and you think it may be time for them to stop driving, remember that this is a very sensitive issue and you must help the person see that his or her driving has become dangerous. Before bringing up the subject, look at the possibilities how to help this older driver, being prepared as they have a million excuses to keep their freedom which is extremely relevant for Parkinson's patients. This can help you determine if your concerns are valid and how you might address them.


Another way to help your loved one with this decision is by stressing that giving up driving does not mean giving up mobility. Your support is crucial in helping a person with Parkinson's admit that his or her skills have decreased without feeling stripped of power. To help people with Parkinson's with their decision to stop driving, provide them with transportation alternatives. The Getting by Without Driving tip is to highlight all other possible modes of transportation, including a partner that is still able to drive, taxis, buses, subways and getting a ride from family members. Some cities also provide travel assistance for people unable to use public transportation. (We got something that is called the Plusbus.) If you know someone with Parkinson's who has had to give up driving, provide him or her with bus routes, taxicab phone numbers, and offer to give rides. For more transportation alternatives, check on the internet for options in your region.This may help a person with Parkinson's to adjust and realize that stopping driving does not mean losing independence.


What's the bottom line?

Having Parkinson's does not necessarily result in giving up driving. However, whether you are a person with Parkinson's or a loved one, it is important to be responsible and remember the potential dangers that Parkinson's presents to driving. Ignoring the effects of the disease and its medications on driving will only create a more dangerous environment for you and other drivers. The best way to be a responsible driver is by paying attention to your driving skills and reporting any changes to your physician. If you have concerns, don't avoid voicing them out of fear of losing your license. Doctors and family members are often happy to help you exhaust rehabilitation options before asking you to give up driving. If it does come to the point where family, doctors and driving coaches ask you to give up your keys, realize that it is in your best interest to stop driving and explore other transportation options. They love you and don’t want to loose you.

The Old Sailor,
 

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