News

Posted By: Sterling Lynk

The good news is that life expectancy for individuals with Down Syndrome has grown.  The challenge is that these same individuals are now experiencing higher than average rates of Alzheimer's and dementia.  This is why I am grateful that Pat Wilson and the Alzheimer's and Dementia Alliance of Wisconsin were able to share the following tips for staying mentally sharp.

Maintaining Brain Health

– Tips for Staying Sharp at Any Age –

Your brain is not only needed for thinking. It also affects everything you do, sense and feel. We all want to keep our brains functioning as well we can, for as long as we can. These tips can help:

1.    Maintain a healthy cardio-vascular system to ensure an adequate blood supply to the brain. Your brain cells depend upon a healthy supply of oxygen and nutrients from your blood to survive. About 25% of the blood flow from each heartbeat is directed to your brain to feed it and to carry away waste products. When this is interfered with, brain cells die.

• Keep your body weight, blood pressure, cholesterol and blood sugar levels within recommended ranges
• Eat less fat, sufficient protein, and more antioxidant-rich foods – (think: colorful assortment of fresh fruits and vegetables)
• Exercise to keep your blood flowing, your lungs strong, and your weight under control
• Stay hydrated, quit smoking, limit alcohol consumption
• What’s good for the heart, lungs, and blood vessels is good for the brain!

2.    Get physical exercise. Physical exercise not only keeps the blood flowing, but also can encourage the development of new brain cells and brain-cell connections. Exercise reduces stress and increases endorphins in the brain – which improves mood, reduces depression, and helps keep us active and involved. Exercise also improves balance and muscle strength which can reduce falls. Outdoor exercise supplies the body with vitamin D – which is needed for good brain function.

• Even just walking 30 minutes a day can make a difference in brain health
• Dancing, tennis, aerobics and other activities that involve both physical exercise and thinking (mental exercise) appear to be most beneficial to the brain
• Simple ways to increase exercise are to take the stairs, walk or bike instead of drive, fetch things for yourself-instead of asking others, use a push lawn mower, plan active social activities such as walking together instead of meeting for lunch, go dancing, bowling, paddling or hiking rather than to dinner or a movie.

3.    Challenge your brain. Keeping your brain active and engaged increases its vitality and builds reserves of brain cells and connections. The more brain cell connections and pathways you’ve developed – the more resilient your brain will be should future damage occur.

• Exercise your brain in a variety of ways to strengthen and improve all-around function.
• Brain games like crossword puzzles, sudoku, and word search are fun – but only exercise part of your brain – so look for other brain stimulating activities, as well.
• Read, teach, learn something new (a skill, language, poem, joke, song, dance, knowledge), use your creativity, make or use a map, do math in your head, write, play a new game, do your taxes, attend a lecture, “think outside the box.” These activities each exercise and strengthen different parts of your brain.
• Ask questions. Be curious. Take an interest. Try something new. Don’t retire your brain when you retire from your career.

4.    Connect with others. Strong social ties have been associated with better mental health and a healthier brain. So – be social, converse, volunteer, join a club or organization, take a class, invite someone over, play with the grandchildren – or at least turn off the TV and walk the dog.

5.    Protect your brain.

• Take precautions against head injuries: wear your seat belt, wear a helmet when biking, unclutter your house and install shower grab-bars and stair-railings to prevent falls.
• Manage your stress levels: prolonged high levels of stress destroy brain cells.

6.    Get enough sleep. Your brain has important work to do while you sleep, and requires sufficient, uninterrupted, deep sleep to function well at any age. Seek advice if this is an on-going problem area for you.

7.    Treat depression. Prolonged deep depression will impair your ability to follow the other advice on this sheet – and is a risk factor for dementia. Seek help. Treatment is available.

8.    Think positive and have something to live for! Attitude is half the battle in any endeavor. Having goals and a purpose for living gets you out of bed in the morning and keeps you going, even when things get difficult.

9.    Make an action plan – and start today!

By: Sterling Lynk

Late last year many of you shared your lists of favorite professionals, the doctors, dentists and therapists who really get it. Over the next couple of months we will be sharing the most recommended providers in each category for each of the nine-counties our members come from.

 

This week, we are sharing your favorite pediatricians.

 

Your Top Choices:

Dr. Richard Ellis – UW-Health Fitchburg Clinic

(608) 274-5300

Dr. Heather Rainwater – Associated Physicians, Regent Street, Madison

(608) 233-9746

Dr. Julie Waraksa – Dean, Janesville

http://www.deancare.com/doctors-locations/find-a-doc/doctors-profile/?id=2027

 

Please Share

Do you live outside of Fitchburg, Madison and Janesville and know a great pediatrician? Please hit the “Add Comment” button below and tell us about them!

By: Sterling Lynk

Anita Bhattacharyya, researcher at the Waisman Center, is looking for a “Special 10” to help her complete her current brain development study.  She sold me.  Here is a picture of me donating skin cells from January 5^th:

But, I am getting ahead of myself.

Earlier this week, I had the chance to talk with Anita about her quest to understand the how the brain of an individual with Down syndrome really develops.  Her work has the potential to positively impact individuals with Down syndrome in our lifetimes.  Here are my notes from our talk:

Describe the results you are hoping for.  What could your research mean for an individual with Down syndrome in our community?

Brains develop prenatally.  Unfortunately, we really understand very little about how that happens.  We do know that the brain of an individual with Down syndrome develops differently.  We need to conduct some very basic research to understand how.  We take donated skin cells and then turn those skin cells into pluripotent stem cells.  While we turn those stem cells into neurons we can actually watch how those cells would develop prenatally.  Once we understand how that development happens, further research can be done to discover treatments, both medical and behavioral, to improve cognitive functions in people with Down syndrome.

What is the funding environment for research on Down syndrome?

The recovery act helped fund Down syndrome research.  At the national level, there has been an attempt to push forward basic research on Down syndrome but that has not really changed the amount of resources available, especially when compared to research for other disabilities.  Also, private foundations tend to not fund the basic research that is needed right on Down syndrome.

  

How many more people to do you need to complete your research on brain development?

We need skin biopsies from five more individuals with Down syndrome and four more biopsies from typically developing individuals.  We use the samples from the samples from people without Down syndrome was a control.  The biopsy takes less than 15 minutes and is virtually painless.  Since these stem cells come from donors, there are not the ethical questions that embryonic stems cells have. 

What else are you working on?

Since people with Down syndrome are living longer we are seeing more and more cases of Alzheimer’s disease in people with Down syndrome.  We need to under the development of Alzheimer’s in individuals with Down syndrome.  We will use stems cell created from donated skin cells to follow up the brain imaging studies my colleagues here at the Waisman Center are conducting.

Do you have 15 minutes?  You can help Dr. Bhattacharyya complete this necessary and basic research.  Please email her at Bhattacharyy@Waisman.Wisc.Edu with any questions you have or if you are interested in participating.  Only 10 of us need to step up.

If you are really curious, you can come by the office at 301 N Broom Street in Madison, and I will show you the tiny spot where they took the skin biopsy.

By: Sterling Lynk

 

Late last year many of you shared your lists of favorite professionals, the doctors, dentists and therapists who really get it.  Over the next couple of months we will be sharing the most recommended providers in each category for each of the nine-counties our members come from. 

 

This week, we are sharing your favorite dentists.

 

Your Top Choices:

Dr. Doug Wilson - Madison Pediatric Dental (Dental and Ortho)

100 River Place; Suite 110 Madison, WI

http://madisonpediatricdental.com/

 

Dr. Allison Dowd and Dr. Tim Kinzel – Children’s Dental Center

Madison, WI and Fitchburg, WI

http://www.madisonkidsdentist.com/

 

 

Please Share

Do you live outside of Madison or Fitchburg and know a great dentist?  Please hit the “Add Comment” button below and tell us about them!

 

Dr. Robert Schoen is the founding president of Research Down Syndrome (http://researchds.org).  On November 15th, Dr. Schoen came to town share with us the latest in advances in Down Syndrome Research, how Research Down Syndrome is supporting that research, and what you can do to help.  This talk was highly rated by the members who were in attendance.

Here is about 45 minutes of the panel discussion from Down Syndrome: Day with the Experts hosted by the UW-Madison's Waisman Center.  I was especially inspired by Doris.  She first speaks in part 3.

You can also reach this video by going to http://www.youtube.com/playlist?list=PL1DC9E96EC8A342C4.  You can also check out the other videos on our YouTube channel.

By: Sterling Lynk

Very early this week the MADSS board held their annual strategic retreat.  The purpose of this retreat was to clearly define the results that need to be pursued in 2012 and to orient MADSS towards our 2013 Vision, which I first wrote about back in July here.  The board also had firmly in mind what you told us in a survey distributed back in July, especially about having a lasting impact.  You can find the results and some thoughts on those results here.

 

The board has reaffirmed its intent for MADSS to use its available resources to ensure that individuals with Down syndrome in our nine counties (Columbia, Dane, Dodge, Green, Iowa, Jefferson, Richland, Rock and Sauk) have the opportunity to maximize their potential within environments of acceptance.  In 2012, MADSS will pursue three priorities to realize this intent.

 

First, individuals with Down syndrome will 1) have access to resources to attain and maintain physical and mental wellness, and 2) develop life skills based on their potential.

Second, communities will be inclusive and accepting of individuals with Down syndrome.  Ensuring accepting and inclusive communities includes, but is not limited to, the following: 1) Political, governmental, and community leaders become advocates for individuals with Down syndrome; 2) Employers provide employment or vocational mentorship opportunities for individuals with Down syndrome; and 3) Medical providers are educated about Down syndrome and best Down syndrome-related care practices.

Third, the support networks of individuals with Down syndrome are well informed and well connected to others impacted by Down syndrome.  These support networks include parents, siblings, grandparents, extended family, friends, advocates and service providers/professionals.

I personally appreciate the thought and diligence the board put into deciding these priorities and figuring out where we should go.  Now it is time to map out how we get there.  I as write this, I am taking a break from pulling together our 2012 budget and programming plan.  It is clear to me that we do some of this pretty well already, some of it we do a passable job at, and the rest we don’t do it at all.  That is why I want to hear from you. 

How do you think we can make worthwhile headway on our three priorities in 2012?  Which organizations in our area already doing a bang up job one or more these priorities?  How do we engage and support grandparents, siblings and others who support those with Down syndrome?  How do we do a better job of connecting with parents? 

I promise everyone who reaches out to me will be heard.

Please Share

Please send an email to sterling@madss.org or call (608)692-7653 with your thoughts, suggestions and leads.

Links

http://www.madss.org/news?mode=PostView&bmi=653548

http://www.madss.org/news?mode=PostView&bmi=670043

Author: Sterling Lynk

I wanted to share with you the photos I have been sent from many of the recent MADSS events.  All of these are located on our Facebook page.

By clicking here you can see a nice photo of Kaethe, Austin and Emily at the Teen Group's August dance.

Please click here to see a couple of pics from the DADS campout. 

Since you are already on our Facebook, please check out all of the neat photos and memories that other members have shared from our 2011 Step Up Walk.  I encourage you to share your own photos and memories from this year's walk.

Author: Sterling Lynk

First things first - Thank you.

Thank you to Anne Stevens, Scott Hinkelman, Tim and Kate Wing, Tammy Hahn, Brenda Ray and all of the volunteers that made sure everything at the walk went well.

Thank you to the long time walk organizers and supporters we honored at 2011 event.

Thank you to our gold, silver and bronze sponsors: Scooter Software; BMO Harris Bank; UW Health; The UPS Store – Fitchburg; Madison Women’s Health, LLP; Communication Innovations; Ryan Brothers Ambulance; Dean and St. Mary’s; AlJan Company Orthotics; Associated Bank; Badgerland Agri-Systems, Inc.; Bodilly CPAs & Consultants, LLP; Farmers Insurance Group – Joe Boese Insurance Agency, Inc.; First American Title; the Law Firm of Murphy Desmond SC; M3 Insurance Solutions; Madison Concourse Hotel and Governor’s Club; Quantum Devices, Inc.; State Farm Insurance – Agent Jim Hartman; and, Summit Credit Union.

Thank you to our partners: LaMovida WLMV 1480; Pepsi; Skyway Productions; Special Olympics; Custom Canines; and, Wenzel’s Farm Sausage.

Thank you to the companies and individuals that gave items and experiences for our silent auction.

Thank you to Sarah Carlson for being an excellent Emcee.

Most of all, thank you to all of you.  Over 500 of you came out on a nice Saturday, September 17^th to increase the community’s awareness of Down syndrome and to support friends and family who are impacted by Down syndrome.  I appreciated meeting many of you and I am looking forward to another strong year in 2012.

Now, A Challenge.

I was so busy during the walk I only managed to take 4 decent photos.  They can be found on our Facebook page here. 

Please share your digital photos from the walk on the MADSS’ Facebook page and, if you want, write a little bit about your experience that day.  The four people whose photos receive the most likes between September 29^th and October 6^th will win a small book of coupons for free custard from Culvers! 

So, first share your best pics from the day.  Second, please get your friends, family, neighbors and co-workers on our Facebook page so they can like those photos.

Resources

http://www.facebook.com/pages/Madison-Area-Down-Syndrome-Society/159035010996

 

By: Sterling Lynk

Last week many of your received the 2011 MADSS print newsletter.  In case you did not receive your copy, or you just want another copy to share, a PDF of newsletter can be found here. 

All of the contributors to this print newsletter really appreciate the positive feedback you have given us.  We are glad you enjoyed it.