Showing posts with label patient. Show all posts
Showing posts with label patient. Show all posts

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,
 

April 11, 2009

Already today my body has become my enemy

Dear bloggers,

Yesterday was the day that I had to go to the hospital; hopefully they will come soon with some results as living with pain 24/7 is unbearable.
At least that is what I think.
As all the results of yesterdays examinations brought absolutely nothing.
My day at the hospital started at 09:30 and ended at 17:00 well I was fully in a sarcastic mood when we went home.
Only a lot of frustration was what they could offer me, and for **** sake it is eating me alive.



If they can at least tell me what my future will bring me, and even if it means that I can work only a few days a week.
It will give me something to struggle with.

Well this how my day looks like, when I am home.
I love my family and I know they love me.
A little understanding would go a long way.
It is 6:15 am. I stumble towards the bathroom as hot water is a relief and helps me to get in motion.
Already today my body has become my enemy.
Some days are worse than others, and I have not held myself back enough lately.
I have been enjoying my kid's playing outdoors too much.



The pain bothers me all night long every night, all day every day.
No position is comfortable.
I keep moving and trying to position my body so it won’t hurt so badly.
The alarm goes off, I wasn't asleep but it still surprises me.
When I stand PAIN! My feet hurt so badly, and it just goes on up my body like a tidal wave.
Sometimes it brings tears to my eyes.
I try hard not to let any one see me when it is this bad.
Just my wife but she is most of the time sound asleep.
Some days are worse and this day is worse.
I just keep moving, walking praying my muscles and joints will loosen up enough for me to enjoy the morning with my daughters.



I want to take my muscle relaxer and a paracetamol when they leave.
Words cannot describe what I feel; is it called fibromyalgia or polymyalgia or is it Lyme disease?
What ever name it is given it has had me in its grip since this winter.
Sometimes I don't know what causes it.
It takes me by surprise I may make a soft grunt or moan.



I am feeling horrible and it is coming out as I am grumpy and burst out in anger if they are not listening.
I know it is wrong to yell at the ones that you love.
But god it is difficult sometimes.
You know that no one wants to hear you moan or complaining.
The pain has control, I am exhausted, my whole body hurts, and even my eyes feel dry and gritty.
It feels as if my bones are cutting through my muscles, tendons and skin.
It feels as if I am metamorphosing, my muscles can no longer support my bones and are melting away.



I feel I am turning into something ugly; I don't want to go out unless I absolutely have too.
It hurts and I am so tired of this PAIN second after second, minute after minute, hour after hour, week after week.
I cannot keep up with housework; the rare visitor probably thinks that I am lazy.
I see the looks I get. I am not lazy. I am disabled (ugly word).



I work still a full time job at the receptiondesk of a ferry, raising together with my wife two daughters.
I did all of this at the same time.
I was strong, the busier I was the more I loved it, but all of a sudden I had to take it easy and it was the start of a life full of pain.
I say this to people who don't have Acute Chronic Pain; do not judge me.
I may look normal enough if you don't look close.

But know this you are fortunate.
I am in constant, unending, unrelenting PAIN.
It rules my life, my family’s life.
It seems I only exist at times.
My empathy to all of you who suffer as I do.

It took me a while too write this story, but it is worth it as my life is at certain times pretty frustrating.

The Old Sailor,

March 16, 2009

If pain is taking over your life.

Dear Bloggers,

What if pain is taking over your life.
At the moment I am living life with a lot of pain, my doctor got finally realistic and sends me to specialist of internal diseases.
I am just over 40 and my body is fully working against me. In the blood tests that were done, once again there was nothing found and I am so not amused.
All my joints are hurting, my neck, my elbows, my knees, my wrists (off and on in various finger joints) and one of my ankles.
The year has just started and it is a painful beginning.

About 12 months back they discovered that I have Tietze's syndrome.(Costochondritis)
I walked around for almost 2 years with a nagging pain in my left side at my 4th rib from the top counted.
First they thought that it was pain of the recovery of my lung after the pneumonia that I've had.
Because I was still fairly unfamiliar to the intense pain it caused, in the beginning I was a few times rapidly rushed to the hospital with an expected heart attack.
The symptoms seemed to be very similar and the pain at the left is so stinging that it just feels like you are going to die.
The hospital found out, after a number of examinations that there was nothing wrong with the heart.
But what it was, they were not entirely sure.



To my great surprise I had a number of things that I no longer used as such as my garden tools.
This kind of things I have to suffer with an intense pain that will bring me one or two days completely down.
When the diagnosis was made that I had Tietze, I started searching the Internet and came to the discovery that I was not the only one suffering from this.
I ended up on the site of A. G. Hol: www.tietze.nl
I discovered only now that it is something that has been there for years and I finally figured what was going on with me.

In winter I have trouble getting up on my feet and I'm stiff from head to toe.
All my moving parts are hurting like hell.
I am like a very old man when I am at the beginning of my day.
To give you an example of how my day is:
“You feel like having a heavy flu than you can also sense the pain from the muscles, also the heavy feeling and being extremely tired is part of it.” (I fall asleep in the middle of the day, I get sleepy out of nothing.)
I am simply falling asleep from one moment being fully awake until the next moment I am falling into a deep sleep.



However, the severe pain is getting sharper and tears my soul in two.
My fingers do not work with me and they are so stiff and painful, and my daughters, I can not help them, for example, a biscuit packaging I can not open it.
But whatever is coming on my path, I also have to learn to accept and that fibromyalgia is going to be part of my near future, and again I just have to get used to it.

Life is a path that is crossed by pain and love.
Only a pity is that I see more pain than love.
Happiness comes in small pills, who are also called painkillers.

The Old Sailor

March 10, 2009

Happy Birthday Old Sailor.

Dear Bloggers,

It is that time of the year again, soon there is my birthday to celebrate and year 41is there (that is 14.975 days).
Like every year the discussion starts what should we get you this year.
And funny enough the answer is already there, like always.

This year I get a new car stereo as the “old” one is giving up on us.
Not too expensive I claimed as the “new second hand car” might have these things integrated.



Aging. Getting old. Nothing seems to shrivel up a person's wish to celebrate the anniversary of their birth like the number of candles to be lit on their cake.

Sure, there's a large number of cards at the corner store dedicated to sagging skin and creaking joints, but you know: age is just a number, right?
Comedic interpretation, learning to laugh about turning 41 will do much more to make you smile than woe over your latest grey hair ever will.



There's great reason to look at getting older as a good thing - you get to move on from the torture of growing up and look forward to things to come. With age tends to come a sense of peace and forward thinking - as we move into adulthood, life can become more about what the future holds for us than what we missed out on yesterday.

Now, a quiet dinner with your loved ones, without any gifts at all, can make for the best celebration you've ever had.
Remember the hell that was adolescence? You're done with shyly wondering if the popular kid in school was gossiping about you or one of your best friends.

Your early twenties were likely the years of (not just birthday) parties, hot dates, not being a grown-up, but no longer a child. It seems like every one's got the same early 20s strife: we searched to figure out who we were going to be with someone else, instead of figuring out who we already were. We were running after the perfect achievements - things, friends, careers and lovers - without being able to sit still and recognize what we already had.



I've heard that with the 30s comes a sense of peacefulness and acceptance. We stop always looking for something better, shinier and more expensive and get to know ourselves. We become more focused on comfort, as opposed to unachieved idealism. Some of us develop families and become the parents we would like to be; others put their time and effort into career and personal development outside of the home. Some of us do both! All of us tend to learn that what we have is okay and even a little bit wonderful, and we drop the feelings of regret over unimportant choices we made in the past.



With our 40th birthday, we might evaluate our lives. Our kids (if there are any) are often growing old enough for us to grant them more independence, we've got a lot of experience we didn't 20 years ago, and we've come to know ourselves and the world around us enough to ask, "What's next?" without negating anything we've already lived. We can sit, pondering whether we'd like to study something new, take a new turn in our careers, start a business - and best of all, we've gained enough confidence in ourselves to believe that we can do what we set out for.



I can't wait to get older and to celebrate each birthday that marks me maturing. Maybe wrinkles and sagging aren't on my wish list, but the wisdom, being comfortable with myself and my life's choices, peacefulness and the adventures that await? Definitely the best birthday presents I could ever hope for.

What are you looking forward to as you get to your next milestone?

The Old Sailor,

November 20, 2007

Als het even tegenzit


Als het even tegenzit in het leven leer je je echte vrienden en de mensen om je heen een keer echt kennen. Dit wordt je pas duidelijk als jezelf of je partner in het ziekenhuis terecht komt. Het is zowel voor de patiënt als de partner een moeilijk te overwinnen tijd. De patiënt heeft zijn eigen problemen met beter worden en krijgt de aandacht van iedereen. De partner daarentegen is vaak het onder geschoven kindje. En word met al zijn emoties en verdriet met rust gelaten, terwijl deze juist de hardste klappen krijgt te verwerken. Ik weet me nog als de dag van gisteren te herinneren dat mijn eigen partner samen met mij de eerste hulp in wandelde en nog geen drie kwartier later ik on voorbereid kortstondig afscheid van haar moest nemen bij de ingang van de operatie kamer. De onthutsing en spanning die dit teweeg bracht heeft me nooit meer losgelaten. Je bent op zo'n moment volledig ondersteboven gelopen door alles wat er op dat moment gebeurt dat je gevoel hebt dat je midden in een boze droom zit. En omdat je zoveel tijd hebt om na te denken haal je je de meest gekke dingen in je hoofd. Hoe moet het nu verder als er iets misgaat. Wat als ze gehandicapped uit deze operatie komt. En de omgeving gaat gewoon verder met zijn dagelijkse beslommeringen want de wereld draait gewoon verder. Waarom is er niemand buiten een paar om die zich om de partner bekommeren. Deze is niet zielig of ziek, maar heeft wel een stukje afleiding nodig. Voor mij is het moeilijk te verkroppen geweest toen ik zelf in het ziekenhuis raakte en ik niets te klagen had over bezoek, maar dat mijn partner in deze een beetje links bleef liggen bij de rest. Ik ben gewoon weg niet de meest bezorgde persoon maar je leest veel in de ogen, het gezicht en ook uit de verhalen die ze je vertellen kun je de vereenzaming soms voelen. Natuurlijk wil je als partner een niks aan de hand idee creëeren en de een is hier beter in dan de ander. Dus mijn overtuiging is dan ook vergeet de partners niet.
Een beetje tijd inruimen voor iemand is het beste wat je kan doen.

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