176 posts in the category “Parkinson’s Disease”

Deep brain stimulation (DBS) by the numbers, 30 years in

Posted April 19th, 2018 by

Now that deep-brain stimulation (DBS) — a groundbreaking treatment for Parkinson’s disease — has been around for just over 30 years in the U.S., check out some stats and data about it. Plus, see how many members of the PatientsLikeMe community have had DBS and what they’ve said about it.

What is DBS and how does it work?

DBS is a procedure that uses a surgically implanted, battery-operated device called an implantable pulse generator (IPG) — similar to a heart pacemaker and about the size of a stopwatch. The IPG delivers electrical stimulation to specific areas in the brain that control movement, blocking the abnormal nerve signals that cause Parkinson’s disease (PD) symptoms.

Take a look at some key dates, stats and facts related to DBS:

  • 1987 – the year that French neurosurgeon Dr. Alim-Louis Benabid developed modern DBS
  • 1997 – the year that the Food and Drug Administration (FDA) approved DBS in the U.S.
  • 100,000+ – the number of people who’ve had DBS surgery
  • $35,000 to $50,000 – the cost of DBS surgery (bilateral procedures may cost upwards of $70,000 to $100,000); Medicare and most private insurance carriers will cover most, if not all, of the costs of the operation, according to the National Parkinson Foundation (but check with your insurance company and your doctor to be sure)
  • 1,000 – the approximate number of hospitals and healthcare centers that perform DBS around the world
  • 1,000 – the number of DBS surgeries some of the most experienced neurosurgeons have performed; PatientsLikeMe member tip: “If you decide to go through with [DBS], be sure and ask how many procedures the surgeon has done. The more they do it, the less risk for you.”
  • 336 – PatientsLikeMe members who’ve reported having DBS for Parkinson’s disease (join the community today to connect with these members and ask questions)
  • 131 – PatientsLikeMe member evaluations of DBS as a treatment for PD (join/login to see all 131)
  • 10 – the number of factors that neurologists may consider when deciding whether a person with PD may be a good candidate for DBS (for example, see these guidelines from the University of California, San Francisco [UCSF] and the University of Florida Health)

Talk with your neurologist about whether you’re a candidate for DBS, and consider seeking a second opinion. Primary considerations typically include:

  • Having a clear diagnosis of idiopathic PD (rather than atypical PD or more complex “Parkinson’s plus” syndromes)
  • Having good cognitive function
  • Showing clear improvement of motor symptoms with sinemet treatment (“In general [DBS] surgery makes the ‘off’ states more like the ‘on’ states but rarely does better than the best ‘on’ state,” according to UCSF)

For even more info, check out the National Parkinson Foundation’s Guide to DBS Therapy.

On PatientsLikeMe, members have mentioned DBS more than 2,000 times in the PD forum, discussing everything from the decision to have DBS to programming a DBS device and DBS outcomes. One member even keeps a blog about his experience with DBS.

Are you considering DBS or are you already using it as a treatment for PD? Join 20,000+ members living with PD on PatientsLikeMe to talk about this and other treatments.

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

Posted March 21st, 2018 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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