5 posts tagged “PD patients”

Driving with Parkinson’s disease: Safety considerations + turning over the keys

Posted 1 week ago by

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around.

Considerations for driving with PD + 7 questions to ask yourself

“You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.”

Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities.

There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive:

  • How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights?
  • Would I be putting my passenger (friend or loved one) at risk?
  • How fast is my reaction time? Could I safely avoid a surprise obstacle in the road?
  • Has anyone (friend or family member) commented negatively on my ability to drive?
  • Can I handle multiple activities at the same time (whether driving or not)?
  • Can I effectively and quickly turn the wheel or step on the brake with enough strength?
  • Do any of my medications cause side effects like sleepiness, dizziness, blurred vision, or confusion?

AAA Foundation for Traffic Safety published this self-assessment quiz and booklet for the general population of drivers ages 65+, but your own evaluation of your driving (and even your doctor’s assessment) may not capture all the true risks.

Driving assessments

PatientsLikeMe members have talked about how you can get a driving assessment to help you independently determine your driving abilities (click here to learn more about different types of professional driving assessments; note: these assessments are not covered by Medicare or private health insurance and you should ask if the results may be shared with your state and affect the status of your driver’s license).

Older drivers can also attend a (confidential) CarFit event, where a team of trained technicians and/or health professionals work with you to ensure you “fit” your vehicle properly for maximum comfort and safety.

Your community’s experiences

Join PatientsLikeMe or log in to see what members have said about the challenges of giving up their keys — as well as the potential bright side, such as no longer having to stress about driving (and associated costs, like car payments, insurance and gas) and — more importantly — possibly hurting someone.

Karl Robb (our blog partner), who has young-onset PD, has written about how he realized he gave up driving at age 30 because of worsening dyskinesia. “Relinquishing the keys to your car is a selfless act of caring and compassion,” he says in a piece for the Parkinson’s Foundation. “It shows that you care about yourself and those who may be put in harm’s way.”

Getting around town

Thinking about giving up or reducing your driving? Look into public transportation or free/reduced-cost transportation services in your area, and ask friends and family for rides (it can help to plan ahead and have a set calendar or day of each week for running errands with them).

“Turns out it is a good time to be a non-driver,” notes one member. “Surely you have heard of LYFT and Uber? They offer inexpensive rides in many US cities. maybe your family could set you up with one.” (See the growing list of cities that Lyft and Uber serve, as well as ever-expanding delivery services, like Instacart for groceries and medications/pharmacy goods.)

Also, explore these other transportation resources:

Join PatientsLikeMe and this PD forum discussion to add your thoughts, questions or concerns about driving. The community is here for you!

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Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

Posted 6 months ago by

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Here’s their take on dating and relationships.

From Karl’s perspective…

Imagine dating in the early dawn of the internet along with a diagnosis of a neurological disorder. As if I didn’t have enough obstacles in my life, now I had to explain to my dates that I had early-onset Parkinson’s disease. Now, I came with a “warning label.” The challenges of dating, connecting, and finding someone who could look beyond my illness would take a miracle — or so I thought.

Admittedly, in my late 20s and showing signs of Parkinson’s disease (mild shaking, involuntary movement, stiffness, gait issues, and mild speech impairment), I didn’t see myself as a gem, but I still felt that I could be a loving and compatible mate. I knew that finding a partner willing to love and marry someone diagnosed with a supposed progressive, degenerative chronic illness wouldn’t be simple – this person would need to have incredible compassion, unimaginable courage, and beauty beyond compare.

I met wonderful women throughout my dating days, but many had their own issues or just couldn’t deal with my illness, or me. After a while, you realize your shortcomings and build up your own confidence. I wasn’t at fault for being ill and I wasn’t looking for someone to feel sorry for me.

I needed someone who could look beyond my symptoms and see my drive, my spirit, and my sense of humor. I needed, Angela.

I had tried conventional dating but was drawn to online dating, which gave me the opportunity to focus on personality, wit, and character, and not worry as much about symptoms that might deter from a positive first impression. I devised a series of 20 Questions and through AOL Instant Messenger (IM) discussions; I was able to see whether we had enough in common to actually meet in-person.

I met Angela by pure luck or destiny. I came across her username and started a conversation about her name choice. We started with intermittent emails that led up to nightly IM exchanges. Following weeks of discussions, we began talking on the phone and ultimately meeting after three weeks. Our professional lives and geographical distance delayed our meeting in person.

When Angela and I finally met for the very first time, it was like meeting an old friend. I can’t remember any date that felt the same.

After a few weeks of our online courtship, I disclosed my ailment to Angela, unsure of how she would react. Happily, and true to her nature, she seemed unaffected when I dropped the bomb.

Now, we have been married for almost 22 years. Angela remains my best friend, my partner in every way, and the person I want to be around most. I am so fortunate, blessed, and lucky – and I know it!

From Angela’s perspective…

When I met Karl, I really had no intention of meeting the love of my life – I was 24. Our first week, we sent emails to each other and played 20 Questions via Instant Messenger (thanks, AOL!). Those questions and answers gave me a perspective into the person who was on the other side. He was funny, intelligent, and caring.

Karl revealed his diagnosis to me via telephone. I thought that Parkinson’s was a disease that only older people got. I spent the next hour asking numerous questions about Parkinson’s and how Karl lived with his condition.

I can honestly say that my first reaction was of surprise that someone who was 28 years old would have Parkinson’s. My next thought was to learn all I could about Parkinson’s.

I did some online searches and consulted a leader of an online Parkinson’s support group. Even though it’s been 23 years since we spoke, I still remember his sage advice: “Don’t get involved with this man with Parkinson’s, unless you are absolutely sure you can live with the unpredictability of this chronic condition.”

I thought about his advice and realized that I wasn’t about to give up a relationship with my soulmate because he had a chronic condition! I committed myself to him and our relationship. I realized that everybody has something that we are living with – none of us are immune from having challenges in our lives. I figured that if Karl could live with my personal challenges, and me, I could live with him, and his challenges!

What has worked for us…

It has been over 22 years since we’ve dated, so we are far from experts, and everyone’s relationship is different. But here are a few important issues that we feel everyone should discuss openly, when they are meeting and developing a relationship with someone – especially if a person in the relationship has a chronic condition:

  • Are you prepared to have open and honest communication? This is the cornerstone of any relationship. It’s imperative that the people in the relationship be honest and truthful with one another. If you can’t do this, you really need to take a hard look at yourself and your possible relationship. Can you communicate your emotions to each other without fear?
  • Are you prepared to trust one another? It cannot be understated how important trust is in a relationship. Trust penetrates all levels of a relationship: physical, mental, emotional, spiritual, fiscal, decision-making, healthcare choices, and more.
  • Can you truly love without conditions? Unconditional love means loving someone no matter what happens – loving him or her through the good and the hard times. Can you give your love when your loved one may be incapable of speaking, showing, or demonstrating their love due to the impact of illness?
  • Are you willing to be flexible and adapt? Flexibility in coping with a chronic condition is a must! Being rigid and unbending in your daily life can make living with the ups and downs of a chronic condition even more difficult. Adaptation requires always being on the lookout for choices, options and new approaches, with an open mind.
  • Can you listen without judgment? Listening is an important relationship skill that needs constant attention. It’s not easy, doesn’t come naturally, and requires development. Listening means being open and waiting for your loved one to get his or her entire message out without interrupting. Listening is important even when it’s hard to hear what the other person has to say.

Finally, you have to be confident and love yourself, no matter what the challenge, in order to love someone else. Be patient with yourself and your potential partner!

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