2 posts tagged “amantadine”

Life with Parkinson’s Disease: What We’ve Learned

Posted December 15th, 2011 by

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Age at Which Patients Experienced Their First Parkinson's Symptom

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.

Some of the Most Commonly Reported Treatments for Parkinson's, As Reported by PatientsLikeMe Members

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.


A Peek at the November Newsletter for Members

Posted December 5th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our November edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

“Got dishes in the sink that won’t get washed today. I just feel so worthless. I could lie down and go to sleep right now I’m so tired.”

Can you relate to this description of fatigue?  Defined as a feeling of weariness, tiredness or lack of energy, fatigue is the number one symptom reported at PatientsLikeMe.  It affects more than 40,000 of you and plays a role in so many different conditions, from rheumatoid arthritis (RA) to Lyme disease to ALS.  What’s more, over half of you rate your fatigue as “moderate” or “severe.”

Fatigue Severity at PatientsLikeMe

Yet fatigue can be much more than feeling tired or unmotivated.  As the quote above illustrates, it can also impact your state of mind…and even your physical mobility.  Many of you report fatigue can lead to depressed mood, emotional lability, demoralization, negative thoughts, anxiety, lack of concentration, brain fog and increased pain.

So, what are 40,000+ of you doing to cope with this debilitating yet “invisible” symptom?  Check out the top reported treatments as well as the hundreds of treatment evaluations for medications such as Provigil, Amantadine, Nuvigil and Adderall; supplements like Vitamin B; and lifestyle modifications such as Naps (which come in particularly handy around the holidays!). You can also join in on the numerous forum discussions about fatigue to pick up tips and advice, including how some of you have tried to describe your fatigue to others using The Spoon Theory.

The first step is realizing that you are not alone.  The second is learning there are things you can do from the best source of all – other patients.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site.  Here are our top functionality enhancements for November.

NEW CONDITION PAGES
Have you seen our redesigned condition pages?  They have a brand new look and feel (as the image below illustrates), and they have been re-organized to share data around five central questions.  For example, what’s it like to have this condition?  What do people take to treat it?  We hope you enjoy and learn even more from the new layout (which, for now, you have to be logged in to see).

A Glimpse of the New Parkinson's Condition Page

SYMPTOMS THAT ARE ACTUALLY CONDITIONS
Back when the PatientsLikeMe platform only supported a limited number of conditions, many of you added other conditions as symptoms.  With our recent site changes, you can now correctly show those “symptoms” as medical conditions on your profile, so we’ve merged them for you.  For example, if osteoporosis was listed as a symptom on your profile, you’ll now find it with your other conditions.  Be sure to check your condition list to make sure it’s up-to-date and accurate.  These changes allow you to add more details to your condition history, and they also make PatientsLikeMe’s symptom and treatment reports more useful.

A MYRIAD OF MESSAGING UPGRADES
Noticed anything different about My Messages on PatientsLikeMe (formerly called your Inbox)?  Here are the recent enhancements:

  • Are you an email scanner? You can now see an inline preview of any new message you receive as well as view more messages on the first page.
  • Search, sort and click! Now, you can click anywhere (not just on the subject) to open a message, search for a subject or username, and sort your messages a variety of ways.
  • When you send a message, we’ll now auto-complete the “To” field with members you’ve written before, and the text box will expand as you type. (This also happens with forum replies.)

A Glimpse of the "My Messages" Page, Where Members Send and Receive Private Messages