An Open Letter to Idaho’s Congressmen

Senator James Risch

Senator Mike Crapo

Congressman Raul Labrador

Congressman Mike Simpson

I am writing in support of the 2016 Parkinson’s Day of Action.  Today our Idaho delegation will be meeting with you and your team to ask for your support of issues critical to the Parkinson’s community. I regret that I am not there in person this year.  It’s ironic that over the years in our meetings I have used the example of the long-term battle with Parkinson’s disease compared to the shorter battle with cancer.  It’s ironic because just a few months after losing my Dad to Parkinson’s, my husband is now in the fight for his life with a rare and aggressive form of cancer.  With a front row seat to the ravages of both diseases, I can assure you they are both terrible. The physical, emotional and financial toll these diseases take on your constituents and their families is catastrophic.  

What is even worse is the fact that we, the world leader in so many things, still lack basic knowledge of Parkinson’s disease.  Who’s gets it?  Where?  What do they have in common?  How can we begin to properly allocate the limited funding resources we have if we don’t know where it will be most effective?  To that end, I implore you to please support the following:

·Advancing Research for Neurological Diseases Act (S.849/H.R. 292), which would create a national data registry for Parkinson’s and other neurological diseases at the Centers for Disease Control.

· Promoting telemedicine and supporting other access to care initiatives that have immediate impact on the ability of people with Parkinson’s to receive the best treatment possible and ensure a better quality of life.  This is absolutely critical in our great state of Idaho, where we don’t have a single Movement Disorder Specialist and your constituents must travel out of state to receive this level of Parkinson’s care, if they receive care for the disease at all.

· Continuing to strengthen funding for medical research that will lead to better options for managing Parkinson’s, more effective treatments, and eventually a cure.

As always, I invite you and your team to contact me directly with any questions you may have.  You may also contact the staff at the Parkinson’s Action Network for specific bill information.

Lisa Bain

Idaho State Director, Parkinson’s Action Network

Parkinson’s Action Network – Making A Difference in the Lives of All Living with Parkinson’s Disease

Israel Robledo

Involvement as an advocate at any level takes time, effort, and patience. If there is an organization that fulfills the need for keeping up with policies and issues that affect the Parkinson’s community, the Parkinson’s Action Network is a must-join organization that allows you to take an active role in advocacy.

The spectrum for involvement starts at the e-advocate level, includes specific district delegates, and the assistant state director level. The time commitment depends on the extent that you’re interested in getting involved. The e-advocate responds to specific e-mails that PAN sends out when there is a pending vote, and support is needed from your member of Congress on an issue. The district delegate role is unique because your congressman is a key member and usually sits on a committee that deals with Parkinson’s related policies and your help is needed to contact them, seeking their help on a…

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There But For The Grace Of God…

Well said.

The Crooked Path

I had not intended to write about Robin Williams. All I know about him is from his professional presence, and I have no right to express a viewpoint about how he lived his personal life. His death is still too fresh, and still too painful for most, for the witty dialogue that seems to be going on in the news media and among the talking heads on the various radio and TV shows.

I learned today, however, that he was a person with Parkinson’s disease. He was still in the early stages of the disease, but I know that severe depression is a fundamental feature of Parkinson’s for many PWPs. It was for me. His private battles with depression over the course of most of his professional life, as well as his obvious attempts to self medicate with drugs and alcohol were possibly, if not likely, the result of his…

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Congressional Briefing Comments – The State of Technology-Enabled Care

Proud of my fellow Parkinon’s advocate! He so eloquently lends his voice to the entire Parkinson’s community, and we are forever grateful for his continued efforts.

Israel Robledo

Following are the comments I made at the congressional briefing on 3-13-14:

Thank you for the opportunity to take part in this briefing. My name is Israel Robledo. I was diagnosed with Parkinson’s Disease in 2007 at 42 years old. I had dealt with the symptoms that included tremors, rigidity, balance issues, and slowness in movement five years prior to that time. As a result of my neurologist in Midland, Texas, whom understood the importance of a good health-related quality of life, I was able to and continue to receive the best specialized care for my progressive, neurodegenerative, incurable disease. I must share that I consider myself blessed to have the partnership with a neurologist who said, “I don’t know what it will be like for you in five or ten years, but in the meantime, I want you to have the best quality of life possible”. He went on…

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The shoe on the other foot.

One of the many facets of Parkinson’s disease can be the changes that are harder to spot from a distance…personality, mood, memory, impulse control, dementia and more. Family caregivers often struggle to accept and deal with these changes. As my Dad’s Parkinson’s has progressed we’ve had our share of these issues, and Mom has borne the brunt of it as his primary caregiver. When Dad is being mean, or confused it’s been easy to tell her not to take it personally and to step away.

And then today I dealt with it first hand, and realized how easy (and annoying) it is to be the armchair quarterback. Someone in the Parkinson’s community whom I care about and respect came at me in a way that took me by surprise and both hurt my feelings and made me angry. You would think that I would have instantly recognized the paranoia, confusion and aggressive behavior as Parkinson’s related. Nope. This armchair quarterback got pretty worked up.

When I finally calmed down I realized that as unpleasant as the whole incident was, it was a great lesson. No matter how much we think we know the right way to handle things, until the shoe is on the other foot we don’t know squat. The next time Dad’s having a bad day, I will keep my advice to myself and just give Mom a hug.

Appy for Advocacy

My customers and I often exchange tech tips and favorite apps, and one of my Realtors recently recommended videolicious for iPad as one I should try. Since I don’t have real estate listings to use, I tried it out using my recent experience at PAN Forum. Given that I did it all in just a few minutes on my iPad, I think it turned out pretty well, if I do say so myself. http://video.videolicious.com/bc58b692-e688-4cb8-a0bd-5381ed50cada

The free version will allow you one minute and up to 10 photos. The premium upgrade is $60 a year, and if you anticipate LOTS of video storage you may bump up on those limits as well.

If you have any other suggestions for easy to use apps, please share.

H-appy day!
TRLB

Why would you visit Congress to ask for protected biomedical research funding 48 hours before the sequester?

I had planned to share with you all the reasons why I travelled to Washington, DC to educate our Members of Congress on the need to protect biomedical research funding, but Shareef Jackson’s recent post, The Sequester & Captain Caveman: Bad for Science says it all.  Enjoy!

TRLB

http://shareefjackson.com/blog/2013/3/2/the-sequester-captain-caveman-bad-for-science

The Sequester & Captain Caveman: Bad For Science

The good old USA has decided to enact legislation that no one wanted to enact. In awesome doomsday terms, it’s known as the sequester. It doesn’t really make sense to me – but apparently our government couldn’t decide whether to focus budget cuts on entitlement programs or revenues, so they just decided to cut everything! Unfortunately, that everything includes science and tech. 

One of my favorite quotes is from Dr. Elias Zerhouni, the former director of the National Institute of Health. He states that the sequester will set back medical science for a generation.  He answers one common defense of the sequester, which is that scientists can just go work for private industry.​

That’s ridiculous. That’s the most ridiculous, caveman statement I’ve ever heard. That’s not the way science works. Science works with bright young people who are attracted to science. David Baltimore had the Nobel prize at 35 for a discovery at 27. Today he wouldn’t even get a grant from NIH. The average age for grant recipients is 38 or 39. Research is an investment, it’s not an expense.

Research institutions will get less money, which means less research being done. Charles Bolden of NASA has outlined how the cuts will affect the U.S. space program with a loss of $51 million, which includes delaying and/or canceling several projects that will lead to the return of manned spaceflight.

My hope is that we get our house in order and squash all of the politics and beef between the House and the Senate. Until we do, our country will continue to suffer.​

Source: Scientific American, via Slashdot

 

The Case of the Working Caregiver

Earlier this week I had the opportunity to visit with an advocate for the working caregiver. You know them, they are the people who are working yet still manage elder care responsibilities; the people who put careers on hold (or at risk); the people who save the government billions of dollars in unreimbursed care expenses; people like me..

The very next day the Idaho Statesman published an article about this topic. (http://www.idahostatesman.com/2013/02/19/2457638/caught-in-the-parent-care-trap.html). Later that week a report was published about the economic burden faced by America’s family caregivers (http://www.parkinsonsaction.org/news/14-4-billion-economic-burden-of-parkinson-s-disease-takes-toll-on-families). Coincidence or evidence of an epidemic?

The case of the working caregiver is the other, often hidden, side of diseases like Parkinson’s. I advocate for protected NIH funding for biomedical research because we desperately need a cure and even a one year delay in research can add 15 years for a cure to reach the hands of patients. I advocate for better access to medical care to the Veterans we made promises to, who have developed diseases like Parkinson’s due to chemical exposure and traumatic brain injuries (TBI). I advocate for Congress to protect these things in the face of looming sequester, all without any consideration to the costs of the working caregivers, the people like me.

There are no easy answers facing Congress. I’ve seen the charts and graphs that spell out the future debt for Medicare and other programs. What those charts leave out is the debt burden currently being paid by working caregivers. The smart decision is to invest in research for cures and prevention now, and spare future generations the burden of ever knowing what it means to be a working caregiver at all.

TRLB

Points of intersection

I am blessed with an amazing career at a company I love, a supportive family I get to see and take care of every day, and an amazing network of colleagues, friends, family and fellow Parkinson’s advocates.

A few years ago when I first fell into the role of working family caregiver and Parkinson’s advocate, I was advised by several people to keep it on the down low so that it wouldn’t interfere with my career aspirations.  (This is the same philosophy that pushes many people to create two Facebook profiles, one for friends and family and one for customers and work people).  And at first I did try to keep them separate…and was miserable.  Maybe it’s because I have my hands full managing one of me, or maybe it’s because I’m a firm believer that WYSIWYG isn’t limited to computer speak, but that’s how thereallisabain was born.

My professional sales experience has helped me be a better advocate, although the process is very different (more on that in a future post). My very public advocacy work has put me in a position to help colleagues and customers as they find themselves facing Parkinson’s or other neurodegenerative diseases.  And by never hiding the fact that I love being in sales for my title insurance and escrow company, many of the people I’ve met in the Parkinson’s community specifically request to close at my company when they buy, sell or refinance.

So by allowing the many facets of my life to freely intersect, everything flows together and forward.

TRLB

***Speaking of networks, I have to thank my dear friend Lisa Thorne for encouraging me to revive my blog.  Check out her blog Productivity Challenge 2013.

 

Accidental Inventor–I’ve fallen and no one can hear me

A month or so ago Dad took a bad fall.  He’d been trying to get a warmer shirt out of the closet when he lost his balance and fell.  It was just after midnight.  Many people with Parkinson’s have a soft or low voice, including my Dad.  Add to that the clothes absorbing some of the sound, and that mom was in a deep sleep…Dad was on the floor for almost four hours.  (Our room is on the opposite end of the house so we weren’t any help either).

I was telling my friend (who has a family member that works at Hughes Security Solutions) about my idea to prevent that long wait for help from happening again. She also has experience caring for a loved one with Parkinson’s, and was eager to help.  There were several small personal alarms to choose from.  I picked out the one I thought would fit best on his walker leg. It cost just under $18.

I chose this alarm because it works like a grenade…pull the pin and it goes off.  If Dad’s tremor was extra bad, or he was too weak to hold down the button, all he’d have to do is pull the cord. Also, the pin never comes all the way out, so you’re in no danger of losing it.  A simple tap to push the pin back in turns off the alarm.

Step 1: I moved the wrist cord to the pin.  This would be tough for someone with PD to do themselves, and I admit my efforts aren’t the prettiest, but it worked. I used a pair of needle nose pliers to remove the ring holding the cord, as well as the cute rhinestone charm off the pin. Moving the cord ring to the pin was more challenging than I’d thought, but it’s functional.

(This particular model also has a motion sensor option.  I made sure that switch was in the “off” position, and closed the sensor cover.)

Step 2: I attached the alarm to the front leg of Dad’s walker using 3M Command Picture Hanging Velcro strips.  (about $4 for a package). I attached it high enough above the wheel that there is no risk of it being accidentally activated, but low enough that if he was on the floor he’d be able to reach and pull the cord.

Hopefully we won’t need to use this, but it does give us peace of mind that should this happen again Dad won’t be on the floor for hours.

TIP: Make sure to remove the batteries BEFORE starting your engineering work…otherwise your family will be subjected to 100 decibels of shrieking alarm.  This model has a slide off battery cover, but some have tiny screws that may be difficult to maneuver.