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Posted by WellSpouse (@janwsa) · Mon, Aug 4 at 10:41am CST

WellSpouse - Patient/Caregiver Scholarship 2014

I have been a spousal caregiver since 1999, when my husband was diagnosed with Young Onset Parkinson's Disease at age 48. I was working full-time and our son was 14 when my husband had to go on disability in 2003.

Not only did we lose my husband’s income, I lost my partner in many ways. He could no longer help me do the yard work and could only do limited household chores. The medications caused side effects like paranoia and involuntary movements, called dyskinesia, that were difficult to cope with. Eventually, his dyskinesia was so bad that he could not eat comfortably, sleep comfortably, sit comfortably, read or drive. He weighed 118 pounds. Friends and acquaintances were worried that he was dying. His doctor then suggested that Allen have Deep Brain Stimulation surgery, or DBS. We decided to move forward with the extensive evaluation process to ensure that he would be a viable candidate for the surgery. DBS surgery inserts wires into the brain and connects them to stimulators implanted in the patient’s chest. Voltage is then applied which stimulates the brain. Thankfully, Allen’s surgery was a tremendous success, and he again has a good quality of life.

Over the years we have become active with several Parkinson’s Disease organizations in order to feel more in control of the disease and help seek a cure. Allen and I sit on the Community Outreach Board of the Emory University-Udall Parkinson’s Research Center and the planning committee for the National Parkinsons Foundation Moving Day Atlanta, which will be held November 1 at Centennial Olympic Park.

To find support for myself, I searched online and found the Well Spouse®Association, a national 501(c)3 nonprofit that provides peer support to those caring for a chronically ill or disabled spouse or partner. I attended my first national conference in 2005 or 2006, and started an Atlanta support group shortly afterward.

The first few years the meetings often consisted of just me and one or two other people. But we all hung in there, and now our meetings draw ten to fifteen caregivers. I am also co-president of the organization along with Dorothy Saunders of Fairfax, Virginia, whose husband is a quadriplegic. We have a Facebook page (https://www.facebook.com/WellSpouseAssociation) and best of all, a closed Facebook group, Spousal Caregivers - Well Spouse Association, with nearly 500 members, that allows people to vent freely and safely to others who understand what they’re going through.

As for me, I have also incorporated my caregiving into my consulting business, January Consulting (www.januaryconsulting.com). I combine my love of market research with my devotion to spousal caregivers and finding a cure for Parkinson’s through providing research services to several nonprofits. For instance, last year I conducted a study of Parkinson's spousal caregivers and presented the results via poster display at the World Parkinson's Congress in Montreal in October 2013.

If you are a spousal caregiver and need support, or if you’d like to help, please visit the Well Spouse website at http://www.wellspouse.org.

Questions about the contest or the voting process? Click here.

SM Scholarship 2014

Richard, CTRibs, copper and 24 others like this
 

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KSDobbs (@kymber) · Mon, Aug 4 at 12:32pm CST · #

I am so glad that I found Well Spouse on Facebook! Even though I am the creator/admin for a Caregiver's page specific to my husband's disease, it is such a relief to be able to share my concerns, fears, adventures, and sometimes, even triumphs with others with a completely different perspective. This allows me to learn so much more from so many incredible caregivers!

WellSpouse and Richard Anderson like this

Richard Anderson (@randerson) · Mon, Aug 4 at 12:35pm CST · #

I know Jan and I know that, as co-president of the Well Spouse Association she is a very talented advocate for spousal caregivers -- she has been there, done that -- and she is skilled in the use of the social media -- she has been largely responsible for starting the WSA Facebook group, Spousal Caregivers. She would be a great candidate for the scholarship and the social media weekend event.

DonnaDee, WellSpouse, Janehdavis like this

Ronda (@rondajo) · Mon, Aug 4 at 1:00pm CST · #

Jan goes above and beyond the call of duty!

WellSpouse, Richard Anderson, Janehdavis like this

LFink (@llrf10) · Mon, Aug 4 at 1:13pm CST · #

I can totally relate. My spouse was diagnosed in 1998 with PD. Jan and I are in the Atlanta group together. Well said my friend.

WellSpouse, Richard Anderson, Janehdavis like this

Janehdavis (@janehdavis) · Mon, Aug 4 at 2:04pm CST · #

I have known Jan for a few years now and thankfully Well Spouse Association is the reason we were brought together, as my spouse also has Parkinson's Disease.Though we do not live near each other, Jan in the Atlanta area and me in the Washington DC area, social media has kept our long distance friendship. We are co-administrators to the above mentioned closed Facebook group, Spousal Caregivers. I am very impressed with Jan's constant devotion to this group, and because of her concern she has developed a very cohesive and understanding group of individuals. These caregivers are dealing and coping with a large variety of illnesses/disabilities, coming from all walks of life, and all are at varying stages of care-giving. With Jan's helpful guidance and knowledge as a friend and co-administrator, I feel I will be able to handle and cope my way through this care-giving journey.

WellSpouse and Richard Anderson like this

Terri (@fragilexwife) · Mon, Aug 4 at 2:46pm CST · #

I have been a member of Well Spouse since 2005. The organization has saved my life as I deal with my husband's devastating neurodegenerative illness (FXTAS). Jan is a wonderful, dedicated President of WSA, and a joy to work with and a great friend to all of us well spouses.

WellSpouse and Janehdavis like this

Sheila Thomas Hill (@sheilathill7) · Mon, Aug 4 at 3:05pm CST · #

I found the Well Spouse facebook page about 3 years ago, and it has truly been a God-send! Jan does a great job with the site and keeps us all going in a positive direction. I cannot even imagine the number of hours Jan spends on all of her work with WSA, the spousal caregivers facebook pages, and her work with Parkinson's awareness and research.

WellSpouse, Richard Anderson, Janehdavis like this

Dorothy Saunders (@dsaunders) · Mon, Aug 4 at 4:35pm CST · #

I am fortunate to have Jan as my co-president, partnering with me to keep the Well Spouse Association thriving and serving the needs of spousal caregivers. Jan is much more savvy than I am about social media, and has enlightened me on how much social media can help connect spousal caregivers with one another to share info and support. It's also a wonderful tool for growing our organization. Jan is a dedicated and enthusiastic volunteer who is also a quick learner. If she is able to attend this social media event through a scholarship award, a great many people will ultimately benefit.

WellSpouse, Richard Anderson, Janehdavis like this

Temeculaws (@temeculaws) · Mon, Aug 4 at 4:59pm CST · #

WSA has saved many of us that are dep in the trenches of spousal care giving. As co-president Jan takes the lead in helping WSA grow and reach out to the community of husbands and wives that care for there ill partner.

WellSpouse, Richard Anderson, Janehdavis like this

stephenr (@stephenr) · Mon, Aug 4 at 5:15pm CST · #

WSA saved my life a few years ago and continues to be the only place as a spousal caregiver where I can go for true compassion and understanding....thanks Jan for helping this to happen...

WellSpouse, Richard Anderson, Janehdavis like this

LarryBWSA (@bocc03) · Mon, Aug 4 at 5:38pm CST · #

I have been a member of Well Spouse (r) for seven years. I have also had the honor of serving on the Board of Directors and enjoy giving back to,this wonderful "family". All caregiving is taxing, but Spousal caregivers lose their best friend, partner, lover, half the team that raises the kids and cares for the home. usually with sky-high medical bills coupled with loss of income(s). And at the end of the day when other caregivers might have a spouse to commiserate with, we are left in solitary. Most of us suffer from PTSD to boot!

Dedicated individuals such as Jan help us provide peer-to-peer support for the millions of spousal caregivers in America. We save the Medicare system billions and only get fiscal support in Vt, Or and in a small way in Ca. The federal government has just started support (in small ways) for Afghan and Iraq veteran spouses).

We are lucky to serve members, via the internet, from around the globe (we have a member coming to our conference in CT this October from Tokyo!).

The Well Spouse Association is lucky to have dedicated individuals such as Jan to help us along the way. Her innovative use of Facebook has gathered many spouses into our fold.

WellSpouse, Richard Anderson, Janehdavis like this

Alida (@alida) · Mon, Aug 4 at 6:53pm CST · #

I am an overseas member of WSA. I could find no other support of spousal caregivers on the internet than WSA, but it has become like family. Even more, during a life -threatening emergency in May, I received instant help through WSA on the internet in deciding what to do. The organization is figuratively and literally a lifesaver.

WellSpouse, Richard Anderson, Janehdavis like this

mperrenoud (@mperrenoud) · Tue, Aug 5 at 3:15am CST · #

Thank you for all you do for those who dealing with Parkinson's and for moderating such a great FB site. Hugs.

WellSpouse likes this

Rose (@bnbgl1) · Tue, Aug 5 at 6:05am CST · #

Best Wishes.

DonnaDee likes this

DonnaDee (@donnadee) · Tue, Aug 5 at 8:01am CST · #

Jan is an incredible person who tirelessly devotes herself and her life to help other spousal caregivers through Well Spouse Association. She keeps us going!

WellSpouse likes this

kk (@trying2bstrong) · Tue, Aug 5 at 9:42am CST · #

There is no way I could have made it these past few years without it. Wellspouse and all my friends here, you have saved my life!

DonnaDee and WellSpouse like this

Linda H. (@lydiab) · Wed, Aug 6 at 10:17am CST · #

Although there are many support groups, articles and even growing awareness of the stress of caregiving in general, only the Well Spouse Association cares for the unique person who is the spousal caregiver. As a former AND current family caregiver and Well Spouse, I have to say that spousal caregiving takes first place in life changing, stressful, heartbreaking stresses. Jan has bravely shared only a small slice of her own daily reality. And Jan has been brave enough to share what she has learned with others so that she can improve the day to day of well spouses and those partners they care for and love. You go, girl! Jan deserves to win!

PVUgrad and DonnaDee like this

blazerilla (@blazerilla) · Sun, Aug 10 at 10:18am CST · #

Jan is an awesome, encouraging leader for our local support group!

PVUgrad likes this

Daniel (@danrs) · Sun, Aug 10 at 10:28am CST · #

my aunt Jan is one of the most devoted people you'll ever meet. She definitely goes above and beyond.

PVUgrad likes this

tinaoj (@tinaoj) · Sun, Aug 10 at 12:19pm CST · #

Jan is the driving force behind our Well Spouse group that provides information and support for 100s of caregivers. She is most deserving of this opportunity.

PVUgrad likes this

Angie (@bridesmother) · Sun, Aug 10 at 1:07pm CST · #

Great article!

Beth (@bubby) · Sun, Aug 10 at 1:52pm CST · #

I recommend Jan for the SM Scholarship 2014!

PVUgrad (@pvugrad) · Sun, Aug 10 at 5:05pm CST · #

Jan goes above and beyond with all she has on her plate! I can not think of anyone more deserving than Jan for the scholarship and the social media weekend event!!

Judy K. (@judy139) · Sun, Aug 10 at 5:50pm CST · #

In June this year I joined Jan's Facebook group, Spousal Caregivers-WSA. I could not have been more happy to find such a great place to be. I have not been a caregiving that long, but with the help of the group I am learning. Jan and the others in the group are always willing to lean a listening ear and offer advise as needed. I truly believe that Jan should win the Scholarship 2014. We need more people like her in the world, thank you.