Parkinson's in the Sub-Arctic (Things could be worse. Really)

I looked at the subject line I just wrote for this post,​ "Parkinsons in the Sub Arctic" and it hit me- sounds pretty damn grim. When you put it like that, what could be worse? That is just the sort of challenge I live for. Piling worst-case scenario on top of worst-case scenario in a high-stakes game of emotional Jack Straws. So here is what could be worse: Parkinson's in the Sub-Arctic, with no coping activities!
Sends a chill right down your spine... or was that just the freezing rain falling outside?

Never fear, here are at least two reasons to hang in there for the month of November. Monday, November 9, You are invited to attend the Parkinson’s Education TeleHealth Presentation -A PDTeleConnection at 1PM. In Anchorage, proceed with all deliberate speed to Providence Hospital 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. There you can participate in an interactive broadcast about Physical Vascular Therapy, which works to improve micro-circulation and promotes blood flow in the smallest blood vessels which may improve pain relief and promote healing.
 

Then, on Nov. 21 we'll have our normal Support group meeting. I plan a presentation on charting your meds to improve dosage and timing. It should be a hoot. See you then.

Your benevolent overlord,

Pete

October Parkinson's Disease Activities in the Anchorage Area

October means Old Man Winter will soon beat down our doors. But he'll go away after a while, unlike PD. So what choice do you have but to take notice of the Parkinson's events coming to Anchorage in October? There are only two coming, so it shouldn't be too difficult to keep track.

On Monday, October 12, A PDTeleConnection at 1PM (To find the Alaska meeting proceed with all deliberate speed to Providence Hospital West campus 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 The speaker will be Deb Fry, Owner and Move Manager of a business that specializes in moving seniors. Topic: Pack with Compassion - A Spokane-area Senior Move Management Business that helps seniors move or helps them stay at home and age-in-place in a compassionate process for either.

​ Our routine support group meeting (insofar as such an extraordinary gathering could be termed "routine) will occur Saturday the 17th in the fifth floor West lounge of the Pioneer Home in downtown Anchorage. Topic: TBA​

Corrections, suggestions and sarcastic remarks are welcome, comment below.

Ploddingly,

Peter

Parkinson's Events in July around the Anchorage Area

Here is what I know about what is coming up in July ...

MONDAY, JULY 14th Another riveting and interactive teleconference! You are invited to attend the Parkinson’s Education TeleHealth Presentation Monday, July 14, 2014, 1:00 p.m. The topic: Practicing good Nutrition is important for everyone. A practical and useful approach Speakers: Sabrina Gondor, CHHC, AADP, CCWS Certified Holistic Health Coach Danelle Crabtree, CMA-C, Corporate Health Alliance Representative. This seminar gives you basic, practical and useful information about nutrition with a focus about what antioxidants are; why they are important; and how using antioxidants can increase your overall wellness. For more information contact : center@spokaneparkinsons.org

Meetings are free of cost. To find the Anchorage meeting, proceed with all deliberate speed to  Providence Hospital 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.) The Parkinson's TeleHealth Program broadcasts live, interactive educational talks to a network of rural communities in the Northwest. On the SECOND Monday of each month, a guest speaker presents a topic eared toward the interests of Parkinson's families. The information is designed to help participants to improve their knowledge of Parkinson's disease and in turn their quality of life.

The regular meeting of the Anchorage Parkinson's Disease Support Group will be held on Saturday, the 19th of July, at 3:30. It's time for our annual picnic potluck. To make this the most festive occasion possible, we will hold the meeting at my house, 9601 Elmore Road. To find the house go to the intersection of Elmore and Abbott Roads, just below Service High School. We are South of Abbott about a quarter mile on Elmore. Our driveway is marked by a green mailbox on your left, halfway up a small hill. Our house has a green metal roof and cedar siding The event is a potluck, so bring something that people will enjoy sharing. We'll see you then!

Peter

Parkinson's Forecast for December in Anchorage

It's time for us to drive dull care way with festive events and high caloric intake. In order to do our part we will be having our Holiday Potluck for our December meeting. What this means to you: unless you want to feel like a slacker, you will show up at the regular meeting time of 3:30 with something delicious to share with your fellow support group members. We will stave off the cold and dark of the season with the bright light of fellowship. I'll bring something main-dishesque. You bring whatever you think the rest of us would benefit from eating. This happens at the Pioneer Home on the 15th of December.

The Telehealth conference will be the 12th of December at 1:00 p.m.  The speakers: Dr. Carlson, a neurosurgeon and Jamie Mark ARNP on "Is Deep Brain Stimulation an Option?". Telehealth interactive seminars take place at Providence hospital in their oncology building off 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. Hoping to see you at one or both of these events!

Pete out.

Caregiving Teleheath Conference, A Quick Rundown

Finally made it back to a Telehealth conference. These come to us once per month, and are broadcast from a room in Providence hospital that has an interactive interface allowing us to see preseentations from various Doctors, therapists etc. Then we ask them questions. Provided, of course that we can speak loud and clearly enough. Today's session was on caregivng. I took notes because I can't help it, I'm a compulsive note taker. Since I got them, I'll pass them along.

Our presenter, Dr. Dan Burdick, started off by talking about "caregiver burden" which essentially means all the stress they feel that falls to (or on) them due to the fact they are the one primarily responsible for watching over a person with a chronic disease.

Dr. Burdick said that a caregiver's role needn't be burdensome, but that there are a number of factors that tend to make it so. Complications from the patient such as age, disease stage, and depression made things tougher for the caregiver.

Caregivers pointed to things like grocery shopping and transporting their charges as primary contributors to their sense of burden. However the biggest predictor of caregiver burden was depression suffered by the caregiver. Dr. Burdick provided a URL for  people wishing to assess their depression, alas, apparently I copied it down wrong. But don't get all bummed out about it, I found this screener for depression courtesy of the Mayo Clinic.

What can be done to help caregivers bear their loads? Dr. Burdick came up with the mnemonic "EARs", which stands for  Education, Assistance, and Resources.

Education: Learn about PD, its meds and their side effects. Learn how to be a patient advocate. Learn the workarounds for various problems that can be fund through physical and occupational therapy.

Assistance: Build a team of family and friends to pitch in. Find people who will help with shopping or housework. This will help allay another concern, social isolation.

Resources: Support groups (our Anchorage group is fortunate to have a veteran caregiver, Betty Berry to help you with your caregiving questions.) The Northwest Parkinson's foundation has various services to help caregivers including a pamphlet entitled "Who takes care of the Caregivers? Here in Alaska one can also go to the Alaska Department of Health and Social Services for help.

For things a caregiver can do for themselves, Dr. Burdick suggested that caregivers be attuned to their emotional state, and to set aside time for themselves and for social contact. This is not selfish, it's only human. Dr. Burdick said that the people who know how to ask for help, actually last longer than those who just blunder alone along their weary way.

Finally it was noted  that the new roles of "Caregiver" and "patient" become superimposed over the old roles such as husband and wife, parent and child. This can lead to problems as new realities make demands on the old relationship.  One way of coping with this is to keep up  parts of your old roles together- get out for a date or go for a walk.

When the question and answer time came I asked what the patient could do to help keep the caregiver going. One answer: Keep doing the things that are your responsibility as long as you can do them. If you were always the one who made the bed, don't drop this simply because of a diagnosis. If you still can do it, why would you stop? This isn't rocket science, people. Unless you actually ARE a rocket scientist. In which case, continue as long as possible.

    ...

Teleheath Conferences: Telehealth interactive seminars take place at Providence hospital the second Monday of each month, 1:00-2:00 pm in their oncology building off 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.