August Telehealth Conference

Hi folks, I'm back, here is the lowdown on the next telehealth broadcast. This month, it's Lewy Body Dementia and Parkinson’s Disease, the presenters are Helen Whitworth, MS, BSN and Jim Whitworth, LBDA. The program will take place August 13 at room 2401 at 1:00 p.m. in the Providence oncology wing on Piper St.  Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.


More to come on this month's meeting.

Peter

Playing for Time, Never Enough

It is unforgettable. You are 43 years old. Outside is the cold and dark of January. Inside, in a small examining room you and your wife need answers. You look at the man you wish could give them. "How long have I got before incapacitation?" Your doctor has been expecting this question, but is unable to suppress a momentary look of... Pain? Irritation? He attempts an evasion " I'm always wrong" he says, offering a show of weakness as the ransom for release from our implacable need. Merciless, we press. "Ten, maybe 15 years" he finally says. A quick mental calculation immediately yields a goal. You want to see your son graduate from college in ten years. That time seems impossibly distant. The path is steep and cut with streams that threaten to wash it from beneath your feet. You shoulder your pills, your fears, your responsibilities and your hopes, strike up a dirge and begin the climb. To your great surprise, and with the help of many hands, that day arrives in brilliant sunlight. So you will celebrate. You will celebrate your beautiful son who has graduated with honors in a demanding field. You will celebrate your stalwart partner of over thirty years. You will celebrate the generosity of family members who come to be with you in this moment of reprieve from the inevitability of loss. You will celebrate the vision and discipline of those that worked to make the path smoother and thank them for their passion and compassion. You will celebrate your companions that walk the path, stumbling over roots, cursing as they trip and fall on the rocks, grunting as they rise unsteadily to their feet, stoically moving forward. It is so easy to forget what you are doing or where you are going when exhaustion sets in and gravity seems tripled. It is so easy to lose your way or your hope as sweat stings your eyes and the insects sting your flesh. Chance set you on this road, but chance did not bring you these many miles. So you mark and celebrate this moment with gratitude and gusto. And you will dare to celebrate the next ten years.

Team Cul de Sac: Laughing at Parkinson's Disease, Raising Money for the MJ Fox Foundation

It's finally time to turn hype into hope. I've been nattering on for a year now about the terrific Team Cul de Sac cartoonist's project to raise money to fight Parkinson's Disease. June is shaping up to be a Team Cul de Sac-apalooza. The effort, organized by Chris Sparks, has two fronts, a book, and an auction. The book, filled with tribute drawings to the cartoonist's cartoonist, Richard Thompson, is is due for release June 5th, and the on-line auction of the cartoons is now open!

Participating cartoonists include Bill Watterson, Pat Oliphant, G.B. Trudeau, Jim Davis and a bunch of other  top-flight talents. (immodesty compels me to admit that my contribution appears above, and you can bid on it right here) If you ever wanted to own work by your favorite cartoonist, if you ever thought it was time to give money to aid Parkinson's research, if you are delighted with the idea of taking on such a bitter, nasty foe and bringing it down with art and humor, now is your chance. What are you waiting for? (Cue "Chariots of Fire theme"...)

The Choice: Subsist in the Woods on Beetles, or Follow These Computer Tips for People With PD

Just when you're fed up with your email in-basket, ready to ditch your computer, and retreat deep into the woods to live on beetles and brown roots, something useful turns up.  I was shocked recently by a note containing what seems to be simple and practical ways to make using your Windows-operated computer easier if you have Parkinson's Disease. The item in question comes from Data Driven Health which, in spite of its name, seems to be run by humans,  for humans. I'm including the entire item here because it appears sensible, and so you can get a feel for what they plan to offer in this new weekly email feature called "PD 5".  If you wish to subscribe go to this link. Here is their message...

Welcome to our first "PD 5" quick note! Each Tuesday, you'll receive a fast and easy tip sheet with 5 suggestions to make your life easier. This week, I have 5 tips to make your computer more accessible.

Thanks for being a valued subscriber. I hope you enjoy this new feature!

Meg

 

PD 5- Tips to Make Your Computer Accessible - Microsoft Edition

1. If your tremor is causing you to make unintended additional keystrokes, Microsoft Filter Keys can help.  Go to Start, Control Panel, Ease of Access, then click Make the Keyboard Easier. You will find 6 excellent accommodations there, but for tremor choose "Turn on Filter Keys."  This option allows Windows to ignore keystrokes that occur in rapid succession, or keystrokes that are held down for several seconds unintentionally.  If you have a tremor, this app will truly help.

2. Is your screen difficult to see? Are text and objects indistinct?  You can change your monitor display settings to increase the size of icons or text. You can also customize colors displayed on the screen to make things easier to see. To change the text size without changing your monitor resolution (which will make things fuzzy) go to Start, Control Panel, Appearance. Select adjust screen resolution and choose 150%.

3. If images seem indistinct or fuzzy, changing your background or text colors can make a huge difference.  Go to Start, Control Panel, Resolution.  Chose Change Theme, and scroll through your options until you find the combination of colors and contrast that work best for you.

4.If images are still too difficult to see, Narrator in Windows can help by converting text and captions to speech.  To have text read aloud;  Start, find the search box, and type in Narrator.  There are many options there, and you may want to turn on some of the other Ease of Access apps to streamline the process.

5. Windows also has Windows Speech Recognition which will write email and documents by speaking commands rather than using the keyboard and mouse.  To use Speech Recognition go to Start, All Programs, Accessories, Ease of Access, Windows Speech Recognition.  Say "start listening" or click the microphone button.

Parkinson's Activity for the Anchorage Area for the Manic Month of May

Though April showers may come your waaaaay, they bring the snowdrifts that melt in Maaaaaaaaaaay. We hope. But while you're waiting for those drifts to depart, here's your PD events for May, as I know them.

This month's Telehealth Conference will be on voice amplifiers and memory assistive devices!  How much more 21st Century can you get than that, I ask you? Find this event Monday May 14 in room 2401 at 1:00 p.m. in the Providence oncology wing on Piper St.  Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.

Next up there is a special program on Deep Bran Stimulation May 17, Medtronic and Swedish Hospital are teaming up to do a blockbuster presentation on Deep Brain Stimulation (DBS). DBS is a surgical procedure that can have significantly beneficial results for people with Parkinson's Disease as well as other brain maladies, including essential tremor and depression. The presentation will be called Diagnosis, Management and Surgical Therapies for Essential Tremor, Parkinson's Disease and Dystonia. Speakers will include

•Jennifer Witt, MD Medical Director, Division of Movement Disorders, Swedish Neuroscience Specialists

•Peter Nora, MD Medical Director, DBS Program, Swedish Neuroscience Specialists

•Peggy O'Neil Shortt, ARNP DBS Program Manager, Swedish Neuroscience Specialists
The event is to take place Thursday, May 17, 2012, 11:00 a.m. – 2:00 p.m. Registration opens at 10:30 a.m.

It will be held at
Anchorage Senior Center
1300 East 19th Avenue
Anchorage, Alaska 99501

*Pre-registration is required for this FREE event. Lunch is provided.

To register, please contact Keely Dailey:
425-213-2147 or keely.dailey@medtronic.com
Bring your best DBS questions. These people have been at this for some time now, and should have answers.

But that's not all! We will have our regular meeting on the 19th. Topic: Tai Chi, which has been  in the spotlight a great deal recently in regards to the help it offers people with balance. Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.

I hope to see some or all f you at some or all of these events!

Best,

Peter   
 

Assistance Dogs, For When Mere Obedience is Not Enough

Dogs made the spectacularly successful decision to partner up with humans so long ago we have only myths and legends to describe the origins of this ancient bond. They now live with us in every region of the globe. Some earn their way through hard and dangerous work, sniffing out bombs or guarding livestock. Others win our affection through their sheer charisma, and are awarded lifetime benefits including lodging, board and a decent medical package.

They depend on us, and are great students of the human race, exquisitely attuned and responsive to the small and unconscious signals that we send. In some ways they know us better than we know ourselves. It's a survival skill that works both to their advantage, and to ours.

The phenomenal canine ability to read humans has opened the way for a new role for dogs as service animals for people with disabilities. This afternoon I got to watch a magnificent coppery-coated Golden Retriever named Stan (above) show what he could do. Drop your pencil? Stan will pick it up and put it in your hand. TV remote out of reach? Stan is all over that. He'll find it and deliver it to where you sit. Your change fell in the snow? Stan can recover it, and will drop it in a bucket for you. Dogs are used to assist everyone from MS patients to victims of Post Traumatic Stress Disorder, whom they will awaken from a nightmare. All of which is impressive, but we ask of them even more demanding behavior. We ask them to use their judgement to challenge us when we are headed for trouble.
 
These dogs are reared for "intelligent disobedience" They know us so well that they will resist and even obstruct us when we are unaware of imminent harm. According to the trainers from Alaska Assistance Dogs, canines can tell when a diabetic is experiencing dangerous levels of sugar in the bloodstream and will insist that their charge pay attention to the problem. A friend in Kenai who suffers from Parkinson's told me that her assistance dog can sense when she has a fall coming and will do its best to dissuade her from walking. She reports that when she doesn't pay heed she soon regrets it when down she goes.

This of course requires the human involved to pay attention, evaluate the situation, and decide whether the dog has a point. Then admit that Fido is right and that they are wrong. Ouch.

Are dogs really that smart? Smarter at times than humans? Let me answer that question with a question. When was the last time when Timmy had to save Lassie from falling down a well?

Doing My Bit For Parkinon's Disease Awareness Month

Parkinson's and creativity: What Choice do You Have?

Not long ago there was a burst of items on the Web reporting a link between the start of dopamine therapy for Parkinon's Disease and a flowering of creative energy. This interested me because of the "creative roll" that I have been on since my diagnosis ten years ago.

As this streak continued to unfold I began to wonder if it was an artifact of the treatment. If so, was the treatment merely bringing me up to my baseline creativity, or was I being "artificially enhanced", like a ballplayer hopped up on steroids? I worried and wondered for awhile, and then it hit me: What difference does it make? What is important is what you can and do accomplish. The other stuff just isn't measurable.

Parkinson's is at work in our bodies long before the first tremor betrays its presence. When that first tremor does show, it means that 70-80% of the dopamine-brewing cells in your substantia nigra are no longer in the dopamine manufacturing biz. The fact that one can skate so long with such impairment is truly amazing, and I have grown to find it comforting. But again I pondered, what had Parkinson's stolen from me before we caught it red-handed? It is the inverse of the first question, and just as useless to worry over.

Parkinson's Disease itself is fiendishly creative. It reshapes personalities, habits and even physical characteristics. It demands a creative response. One has to rethink how life can be approached, from the simple act of walking to the complexity of spousal relationships. And because Parkinson's Disease is always on the move, we must stay on the alert for new ways to cope as old strategies lose their efficacy. As our capabilities diminish, we must incorporate new ideas of who we are into our notions of ourselves.

This is a form of creativity that can't be measured in the number of drawings executed or the number of sonnets written. It is the process of building meaning from the pile of jackstraws that we become following the diagnosis of PD.  It entails loss and bereavement. It's hard to accept. But to go on, you have to re-imagine yourself in ways you never would have without the challenge of this disease. This is the creativity demanded of all of us who have Parkinson's Disease. So far, it remains unmeasured.

Coming Soon to Anchorage, Deep Brain Stimulation Symposium

Medtronic and Swedish Hospital are teaming up to do a blockbuster presentation on Deep Brain Stimulation a surgical procedure that can have significantly beneficial results for people with Parkinson's Disease as well as other brain maladies, including essential tremor and depression. The presentation will be called Diagnosis, Management and Surgical Therapies for Essential Tremor, Parkinson's Disease and Dystonia. Speakers will include

•Jennifer Witt, MD Medical Director, Division of Movement Disorders, Swedish Neuroscience Specialists

•Peter Nora, MD Medical Director, DBS Program, Swedish Neuroscience Specialists

•Peggy O'Neil Shortt, ARNP DBS Program Manager, Swedish Neuroscience Specialists
The event is to take place Thursday, May 17, 2012, 11:00 a.m. – 2:00 p.m. Registration opens at 10:30 a.m.
It will be held at
Anchorage Senior Center
1300 East 19th Avenue
Anchorage, Alaska 99501

*Pre-registration is required for this FREE event. Lunch is provided.

To register, please contact Keely Dailey:
425-213-2147 or keely.dailey@medtronic.com
Bring your best DBS questions. These people have been at this for some time now, and should have answers.

Dr. Alec Glass, PD Specialist to Continue Serving Alaskans in New Solo Practice

Our visiting Parkinson's specialist Dr Alec Glass has parted ways with the neurology practice he was affiliated with here in Anchorage (Alaska Neurology Center). Dr. Glass plans to continue serving Alaska patients, and as of now is setting up his own office here. If you are a patient of Dr. Glass, and wish to continue seeing him here in town, you may reach him by phone at 1- 800-764-7690 . He anticipates being available for patients by mid-late April.