Archive for February, 2012

Let’s stand strong together in solidarity for

World Rare Disease Day 2012!

February 29, 2012

Rare Disease Day 2012

Rare Disease Day 2012

 

 

 

 

 

 

 

World Rare Disease Day 2012

“February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities converging around the slogan “Rare but strong together”.

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!

The focus of this year’s event is Solidarity.”

 

 

Rare Disease Day USA 2012

“Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.”

“In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity.”

***

Write your representatives

As part of this awareness campaign, the organizers suggest that we write to our government representatives to tell our story in order to paint a better picture of what families dealing with rare diseases endure.  In this manner, we can point out the specific problems that must be addressed and begin the process to overcome them through awareness, research and legislation.  An excerpt of their letter follows:

“…Most rare diseases still have no treatment.  Of the 7,000 listed on the NIH website, only about 200 have FDA-approved treatments. Individuals and families affected by rare diseases feel alone and forgotten by our nation’s healthcare system, and often have to fight their own battles to obtain needed treatment and services.

“As a member of Congress, we want you to know about the most pressing policy issues facing patients and families living with rare diseases. These include:

  • protecting insurance reforms, such as the elimination of annual and lifetime insurance caps
  • implementation of provisions related to rare diseases in PDUFA V
  • ensuring adequate levels of funding for NIH and FDA to promote medical innovation and protect the safety of the American public
  • eliminating barriers to access to treatment
  • achieving coverage parity of medical foods for rare inborn errors of metabolism, consistent with coverage standards for other life-saving treatments…”

Let’s increase research for successful treatments, cures & eradication of rare diseases during our lifetime!

 

Continuing with the parade of guest blogs at CaregivingCafe Blog, I asked Rob Harris if he would like to contribute an article.  He graciously agreed!  Thank you very much, Rob, for your enthusiasm and can-do attitude!

Rob’s blog RobCares provides support, resources, advice and encouragement to caregivers.  A caregiver himself, he takes care of his wife Cindy, a 2-time cancer survivor.  His compassionate demeanor and understanding of caregivers’ situations, evident in his responses and articles, bring much needed consolation to those affected by cancer.

Please visit his blog to learn about cancer and to find a gentle shoulder on which to lean during your caregiving journey.

 

 

You are now a caregiver: Is your glass half-empty or half-full?

by Rob Harris, SPHR

Republished by permission

RobCares

October 21, 2011

 

Everything is going  great. You are enjoying your job, family, friends, your favorite  restaurants, indoor and outdoor recreational activities.

And then, suddenly and unexpectedly… your life is turned upside down. You feel an obligation to, have no choice to, or  are elected through a process of elimination to be the caregiver to a loved  one.

Caregiver Stamp
Your new title as Caregiver.

As soon as you accept the title and its accompanying accountability, your life is in for a drastic change. In most cases, it is not for the better. Along with worry, concern, panic and a  myriad of other emotions that result from the ill-health of a dear family member, you feel other emotions, all selfish and destructive in nature.

Because you’re human, it’s  understandable that you may experience each and every one of them. Your calm  and relaxed world has just been turned upside down. Sitting poolside and  reading a magazine may be replaced by sitting bedside and reading how to care  for someone who cannot care for themselves. Taking long hot showers may take a  backseat to giving sponge-baths. Going to the pharmacy and doctor’s appointments may replace going to lunch with friends. The list goes on and on….

The length of your “sentence” could be weeks, months and maybe even years! It could be your child, a spouse,  a sibling or one-or-more parents that potentially have a need for  around-the-clock attention. The possibility is that one or more people may have  to suddenly move in with you.

Your career, your life-savings,  your free time and many other important aspects of your life may all be adversely affected. How can you not be dismayed, hurt and possibly even resentful? You  have every right to be angry, upset and, if allowed to manifest itself over  time – depressed.

Robcares change your perception
Take a mental U-Turn and change your perception!

Of course, allowing this  mind-set to control you is certain to create additional problems; poor  relations with family, friends and the person for whom you are caring. Worse,  it will likely impact you both physical and mentally. Once you’ve allowed yourself time to grieve for the loss of your independence and previously lesser  responsibilities, it is time to take a mental U-turn and change your perception  of your current situation.

Consider the fact that  you are needed. A very important person is relying on you to help them get  through what is likely to be the most emotionally and physically challenging  time of their lives. You will be responsible for caring for someone who loves  you, and, hopefully, you love them back. They are not a stranger. If they  brought you happiness in your lifetime, is there no better form of repayment?

Once you’ve opened your  mind to the fact you will be the caregiver, it is time to consider how to make it as pleasant as possible. Your mission is to find happiness in the knowledge  that you chose or were selected to care for someone in need – of you!

When my wife contracted her second bout of cancer, there was little doubt who her primary caregiver would be – me! I readily volunteered for the job. However, I did have to battle some internal demons. I knew my life would be changed.

My first determination was that my wife and I were going to have fun. I decided was that every day would be a happy day. Each day would be motivational  toward the final goal of getting better (though, in the back of my mind I knew  the odds were very much against us). Next, I vowed I would not argue with my wife or let her see that I may be getting frustrated. This would be  counterproductive.

RobCares Family
“I decided every day would be a happy day with my family!”

 

I began to blog. In that way, everyone (and there were many) that wanted to be kept up to date on how my wife was doing, would receive updates.

Each day, I planned either a fun activity, like pizzas for the medical team during college football Saturdays, or other things not typically seen in hospital rooms. I decorated our entire room and hospital door in Christmas decorations one year. When people came into our room, they found her chemotherapy pole had been decorated like a Christmas tree. Of course, when we walked the hallway to give my wife exercise, I played Christmas music from my laptop. It was the perfect accompaniment to her chemo pole.

At home, it was a bit more challenging. We had to create fun activities with our teenagers, and I accepted the kind offers of friends to feed us dinners every night. It was not necessarily the meals we enjoyed. It was their company when they arrived to drop them off. As soon as they arrived, I guided them into the bedroom or living room, where my wife was situated.  Their visit allowed me to recharge my battery so I remained positive throughout.

There is so much one can do to take what appears to be a difficult situation and turn it into the most enjoyable day under the circumstances you face. All it takes is some thought, ingenuity, and a positive mindset that each day will not be wasted on being miserable. Nothing will change the fact you are a caregiver, so why not make the most out of each and every day. The result might be that you find yourself enjoying your new role more than you ever imagined to be possible.

RobCares.com

 

I always say that my husband looks like he’s a lazy bum, lounging in his recliner all day long with food, nibbles, refreshment, iPad2, laptop, TV- & Blue Ray-player remotes, laptop and iPhone within reach…and with me bringing him whatever he needs.  Oh yes, and with his clear plastic compartmentalized box containing the 22 pills that he needs to take every day.  We can thank CRPS for that.  As my mother says, you’d never believe that there is anything wrong with him from looking at his face.  He smiles, laughs even, jokes and is still a great conversationalist on just about any topic.  He’s the genius in our household (well, we all think we’re pretty smart, but we defer to him on account that he’s the one with a PhD in Economics), the renegade researcher, the guru of humor and king of trivia.  He gave up his Ministry of Silly Walks when he lost the use of his right foot.

Aim your eyes at his feet, his legs or his arms, and you’ll see that the rosy picture ends there.  His right foot is limp and forever en pointe: he has not been able to move it in 3 1/2 years.  His forearms, feet and shins are covered in flaky skin that thickens and eventually falls off in crunchy pieces – no need for birdseed to leave a trail.  His right calf is half of its original healthy size: the muscle has atrophied.  And if you pay attention, you’ll notice the grimaces and soft breaths that escape as he painfully places his plate on the table beside him or picks up his soda.  You would definitely believe that he is not a well man!  This is the side that the pictures don’t show.

Because so little is known about CRPS, my husband and I expect that his condition won’t disappear anytime soon.  We hope and pray.  Until a miracle happens, we deal with his relentless pain and diminishing abilities best through humor.  It is one of the few things that CRPS has not taken away from him.  That is a blessing!  And if he can laugh being in such pain, then so can we.

These are some of the things that he enjoys.  Maybe they will help you set aside your caregiving – or other burdens – and bring you a bit of joy for a little while.

***

By the way, Caregiving.com, is accepting contributions of funny stories for their next CareGifters book.  Deadline is March 23, 2012.  Sales help raise $500 to give to family caregivers so that they may resolve 1 or more challenges.

Please click Call for Submissions for more information.

***

 

Monty Python’s Ministry of Silly Walks

Monty Python’s The Parrot Sketch

The Maturity Climb

Owner Tells Talking Dog What He Ate & Didn’t Share

Metaphors from NSW Year 12 English Essays

Murphy’s Law Site

Why Parents Get Gray Hair

Anti Jokes

 

Are you maximizing your car?

Are you maximizing your car?

 

 

 

 

 

 

 

 

 

CITIZENSHIP TEST
Saul Epstein was taking an oral exam in his English as a Second Language
class.
He was asked to spell “cultivate,” and he spelled it correctly. He was then
asked to use the word in a sentence, and, with a big smile, responded:
“Last vinter on a very cold day, I vas vaiting for a bus, but it vas too
cultivate, so I took the subvay home.”

 

THE SINKING BOAT
Two Jews, Morty and Saul, are out one afternoon on a lake when their boat
starts sinking. Saul says to Morty, “So listen, Morty, you know I don’t swim
so well.” Morty remembers how to carry another swimmer from his lifeguard
class when he was just a kid, so he begins tugging Saul toward shore. After
ten minutes, he begins to tire. Finally about 100 feet from shore, Morty
asks Saul, “So Saul, do you suppose you could float alone?” Saul replies,
“Morty, this is a h— of a time to be asking for money!”

 

THE PARKING SPACE
Moishe is driving in Jerusalem. He’s late for a meeting, he’s looking
for a parking place, and can’t find one.
In desperation, he turns towards heaven and says: “Lord, if you find me
a parking place, I promise that I’ll eat only kosher, respect Shabbos,
and all the holidays.”
Miraculously, a place opens up just in front of him. He turns his face
up to heaven and says, “Never mind, I just found one!”

 

MEAL TIME ON EL-AL
It was mealtime during a flight on El-Al.
“Would you like dinner?” the flight attendant asked Moishe, seated in front.
“What are my choices?” Moishe asked.
“Yes or no,” she replied.

 

PHILANTHROPY
A visitor to Israel attended a recital and concert at the Moscovitz
Auditorium. He was quite impressed with the architecture and the
acoustics.
He inquired of the tour guide, “Is this magnificent auditorium named after
Chaim Moscovitz, the famous Talmudic scholar?” “No,” replied the guide.
“It is named after Sam Moscovitz, the writer.”
“Never heard of him. What did he write?”
“A check”, replied the guide.

 

CHANUKAH STAMPS
A woman goes to the post office to buy stamps for her Chanukah cards. She
says to the clerk “May I have 50 Chanukah stamps please.”
“What denomination?” says the clerk.
The woman says “Oy vey…my g–, has it come to this?
Okay, give me 6 orthodox, 12 conservative and 32 reform!”

 

I recently joined Twitter: what an amazing cascade of articles, news, resources and every morsel of fact & commentary imaginable!  I have managed to make contact with caregivers or professionals who constantly provide interesting and practical information that caregivers can use.  I have also crossed paths with people who live with ailments like CRPS, rheumatoid arthritis, cancer, diabetes, mental illness or aphasia, and who provide a first-hand account of leading an existence with a chronic condition.  I have “met” survivors who have beaten cancer!  All of them are an inspiration, as they deal with an invisible layer of challenging circumstances that circumvents most of us.  We are lucky!

Because my goal with CaregivingCafe.com is to share information and resources in order to help caregivers in their caring, I have listed some links below.  They include suggestions for handling caregiving issues, finding support, locating benefits, a place to find other caregivers, inspiration and so much more.

Please visit their websites and blogs!

 

CancerHAWK   – cancer caregiver

RobCares   – cancer caregiver

WhereWeGoNow   – cancer survivor

Stan Goldberg, PhD   – cancer survivor, author, caregiving

RainIntoRainbows   – CRPS /RSD fighter

RAWarrior   – rheumatoid arthritis caregiver

InvoluntaryTransformation   – trauma caregiver, fighter

Am I Diabetic?   – diabetes

Nurse Barb   – women’s health

Dementia Today   – dementia & Alzheimer’s

Dreambeanies   – solutions for hair loss

Treatment Diaries   – your diary…shared healing

Aware of your Care   – caregiving tools for chronic illness

Tonya Ferguson   – inspiration

National Aphasia Association   – aphasia

 

History repeats itself.  I am finding that life, too, repeats itself.  Take my then 16-year old son, for instance.  There we sat with his little sister at the dinner table, chatting about the day, planning the weekend activities and joking about this or that, as usual.  I remember occasionally telling our son to put away his skateboarding gear or to do his laundry.  I remember, too, refreshing his memory about proper etiquette at the table or gathering all of his school work so he could turn it in when due.  Actually, I remember the last item being repeated more often as the school year advanced, as well as other “insignificant” little things.

One day, after feeling a strange sense of deja vu, I told him that he was acting like a 3-year old more than a teenager.  I was saying to him things I’d said back in his preschool days.  His 9-year old sister was now his older sister!  He matter-of-factly agreed!  Shortly afterward, I came across an article that said teenagers’ brains are still developing during the teen years.  They have not completed their neurological connections in their brains, but are busily rewiring and creating paths to make it more efficient.  Great!  Back to toddlerhood!  At least, I had some justification of the erratic, seemingly frivolous and perplexing behavior!

Well, I’m finding that being a caregiver for my husband and long-distance for my mother is very much like being a mom to both of them!  Let’s take a look at my responsibilities right now:

  1. prepare meals that will actually be eaten
  2. remind to do different tasks
  3. make sure home / room is safe
  4. provide soft, adequate clothing for weather
  5. cut food into bite-sized pieces
  6. place food in bowls: easier to eat
  7. place drink in no-spill bottle with straw
  8. look for good doctors, services
  9. screen all calls
  10. fill out all paperwork
  11. schedule all doctor’s appointments
  12. talk to doctors, medical staff regarding treatment, test results, procedures, etc.
  13. advocate, speak up, point out issues that need addressing
  14. drive to appointments
  15. overall, lookout for & protect
  16. find little things that make the day enjoyable
  17. listen, chat, support…

A caregiver takes on a wide variety of duties on many levels, depending on the condition of the caree.  I’ll bet, however, that the items above are shared by many.  Looking at all of the tasks, they could easily be on the list of what mothers do because they look after and care for their little ones.  In my eyes, caring is caring.  The specifics are different but the overall responsibility is very similar.  Knowing this, I approach my newish role with the expertise acquired when my son and daughter were little.  I draw on past experiences to guide me in taking care of my loved ones now.  They point me in the right direction and help me think of what to do next.

Motherhood…I guess a good thing is worth repeating!


Inside the Teen Brain

The Teen Brain: It’s Just Not Grown Up Yet

Teen Brains, Beautiful Brains

Caregiver

What Caregivers Do

 

When our dear Dad was diagnosed with multiple myeloma, then informed that his kidneys had failed and would need dialysis 3 times a week, we were at-ready to do whatever the doctor recommended.  Suddenly, schedules became flexible, time was carved out of a packed agenda and energy resurfaced to take care of our sweet, sweet Dad.  That’s what family does!  It doesn’t mean that it was easy or that our other responsibilities disappeared, but we made his health our top priority.  My brother and sister, with full-time jobs and equally full extra-curriculars, took turns taking Dad to dialysis and to doctors’ appointments.  After 1 month of this coordinated craziness, I offered to travel the 2000 miles from Texas to come spend 4 weeks with Mom and Dad so my brother and sister would have a chance at normalcy again.

While at my parents’ home in Maryland, I looked online to see what transportation services were available for them to use after I left.  Neither of them was in a position to drive and my brother and sister could not continue taking time off from work.  To my surprise, I found only 1 which Dad would be able to easily use due to his frailty: MetroAccess.  I called their office to find out how to apply, filled out paperwork that they mailed to our home, obtained the doctor’s confirmation of Dad’s illness, answered some questions, mailed back all the forms, scheduled an interview to confirm his eligibility and requested his first ride on his own.  He was quite happy to go by himself, as he wanted to be sure that he would manage without help.  The driver picked him up at the front door, delivered him to the dialysis center, and picked him up there to bring him home.  To top it all off, Dad said he had the roomy car all to himself because no one else was riding.  Nice!

The cost of riding MetroAccess varies depending on distance.  For my Dad to ride about 6 miles (15 minutes), the cost was $6.50 each way in 2008.  (I believe that the current fare maximum is now $7 per trip.)  This was very reasonable, compared to the taxi fare of $20-30 each way that my mother was charged to travel almost the same distance while Dad was in hospital!  For us, MetroAccess worked very well.

Other forms of transportation services exist for elderly or disabled riders in Montgomery County, Maryland, and in Travis County, Texas.  In addition, state or city transportation programs aid persons with low income. Please contact your local state or county government offices to find out about transportation and other benefits available in your area.  Be sure to look for volunteer organizations that also provide rides.

 

CARTS

MetroAccessibility

MetroAccess – Washington, DC area

MetroAccess – Austin, TX

Capital Metro – Austin, TX

Free Ride to Doctor, Dentist, Drugstore if on Medicaid

Health and Human Services Commission – TX

Transportation Services Locator for Seniors

 

I am a firm believer that 2 heads are better than 1, which means that 4 eyes are better than 2.  Perspectives other than our own help us to see the complete picture, to notice things that we may otherwise miss.  In a way, it’s like seeing events using that infamous 360-degree mirror from “What Not to Wear”!  The style-impaired candidate is always astonished by the view from behind when Clinton Kelly and Stacy London use this mirror to point out fashion faux pas that she aught to avoid.  In similar fashion, getting multiple views of a particular situation helps us to consider alternatives that we may not have dreamed of.

To approach issues from fresh new perspectives, I invited some established caregiving & health bloggers or website owners, as well as some survivors, to share some insights on the many topics that caregivers need to address.  The first of those posts is below.

Thank you to Robyn Stoller, founder of CancerHAWK , who wrote the post below.  The website was created as a result of her husband’s passing on July 12, 2010 and her desire to help others dealing with cancer.  She aims to bring attention to resources and to…

“…so many amazing groups whose sole purpose is to help cancer patients and their caregivers on their journey.  But the challenge is finding them.  How can you search for things that you don’t even know exist?”

 

Please visit CancerHAWK to learn about different cancers, resources, assistance, treatments and more.

 

From CancerHAWK

by Robyn Stoller

Reprinted with permission from Robyn Stoller

Robyn’s Story

 

Top 5 Most Amazing Things People Say & Do

Alan & I have been truly been blessed to have INCREDIBLE family and friends. This list below exists because of them… because of the all the amazing ways in which they helped and supported us.  Actually, it has been very difficult for me to narrow it down to just five but here goes…

 

The Top 5 Most Amazing Things People Can Say or Do…

 

#5.  Really keeping in touch.  Sending a card to let someone know you are thinking about him or her is great and very meaningful.  Alan asked me to keep every single card he received during his illness.  Visiting them really takes it up a notch.  Our house became known as “Chez Stoller”.  Family & friends from near & far came to visit (some for weeks at a time… others for a day or two… and others for a hour).  It didn’t matter how long they stayed or how often they visited.  Frankie even came down from Ithaca to be with Alan (and me) during his very first chemo treatment.  Why is that people (myself included) wait till there is an illness to spend time with someone they care about? ‘Cause life sometimes gets in the way… that sucks! 

 

#4.  Bringing over some meals.   Even if someone says “no thanks”, bring dinner or lunch over anyways.  (Regular sizes portions please… too much of a good thing is well, just too much.)  At first I resisted having friends bring us meals.  I wanted life to be as normal as possible for my family and let’s face it, people dropping off meals everyday is not normal.  Plus Alan was a strict cancer-killing diet.  Well, two of my closest friends ignored me (as they often times do :-) ) and literally just started bringing “Alan-friendly” dinners over every Wednesday.  Another dear friend (who also ignores me often) would show up at our house or at the hospital or at a doctor’s appointment with Panera (she prefers to order dinner rather than cook it).    It was a tremendous help.  Eventually I started accepting other friends’ gracious offers to help with meals… but only twice a week.

 

#3.  Appointing someone to manage the medical bills ’cause boy will they start racking up.  We were so lucky that Alan’s sister was able to help us.  Battling cancer is exhausting.  Battling insurance companies is down right brutal.  Sue negotiated payments with doctors (yes you can negotiate this), managed drug appeals (just because an insurance says they won’t cover something, doesn’t mean that they won’t), and filed for disability (cancer patients who are unable to work because of their condition are eligible to collect Social Security).  And if there was an instance where we forgot to give authorization for Sue to speak to an agency, she just pretended she was me and got the job done.

 

#2. Shaving your head in solidarity.  We knew that Alan was going to lose his hair with chemo so we decided to take the bull by horns and shave it off.  (I told Alan that it’s a good thing I love bald men.)  Much to Alan’s surprise, two of his BFFs were waiting for us at the barbershop.  All 3 got their heads shaved together.  I get tears in my eyes just thinking about this even now.  I promise that if G-d forbid a close friend is diagnosed with cancer, I will absolutely shave my head in solidarity… and then I’m going to get a fabulous long haired, auburn wig.  Alan would have loved that!

 

Bald men are HOT!!!

 

#1.  And the all-time most amazing thing that someone can say or do is to ALWAYS remain positive and hopeful no matter what.  One of my very favorite doctors said, “As long as there is life, there is hope.”  No matter how bad things got, our friends and family remained hopeful that things would turn around.  We all believed that this story would have a happy ending.  (And if a few of them had any doubts, they never shared those doubts with us and I thank them for that.)  Hope and the love and support of our family and friends is what got us through last year.  I can’t even imagine how much worse that horrific year would have been with out this.  

 

Dearest Friends & Family, Thank you from the bottom of my heart!!! I love each & every one of you!  xo, Robyn

 

Numerous agencies aim to enhance the lives of elderly, disabled or chronically ill persons across the country and worldwide.  Finding them, however, seems to be a bit of a challenge.  I think that part of the reason is that unless we are looking for specific services and do some digging, we don’t usually see billboards or hear ads during prime time television or radio about, say, support groups for cancer patients or PTSD literature.  They are frequently tucked away in health sections of the newspaper, which may only catch the eye of someone already dealing with such issues.  Seldom do I see information on new pain treatments or transportation for the elderly, for instance, while I’m out and about so that I am aware of their existence and can research them if and when the need arises.

It so happened that I attended a “Get Acquainted with AGE” meeting in Austin last Tuesday.  The group met initially in their Caregiver Resource Center, which housed on the walls all around the room, information about many organizations and agencies providing services for seniors and their family caregivers.  I had no idea of how many there were!  Directors of AGE, which serves seniors in this capital city, mentioned several ways in which the non-profit helps the elderly and often chronically ill or disabled.  One of the services that stood out in my mind was their Durable Medical Equipment Lending Closet.  In actuality, this program is the means by which a mobility impaired individual can retain some independence.  AGE lends wheelchairs, canes, scooters, walkers and anything else that they have available (through donations) to seniors who need them.  For free.  For as long as they need them.  Wow!

As the group toured the AGE facilities, we were told that this Lending Closet served over 1100 persons in 2009 and about 2500 in 2010!  That day, they had over 200 people on a waiting list, mostly needing wheelchairs or walkers with seats.  Having a disabled husband at home, I cannot imagine him being without his crutches.  I know what it means to him to be able to get up on his own.  I had to get the word out:

 

IN AUSTIN, TEXAS

Please donate gently-used wheelchairs, walkers, crutches, canes, shower chairs, mobility equipment to AGE: Austin Groups for the Elderly!

 

I posted this on CaregivingCafe.com’s Facebook Page and got a comment from Trish Hughes Kreis, a caregiver to her younger brother Robert, who has uncontrolled epilepsy.  She asked where she could donate a wheelchair in California.  I’m in Texas, so I Googled this and came up with the list below.  Again, I had no idea about all of these organizations and about the wonderful work that they do for disabled persons in country as well as the world!

Thank you, Trish, for asking the right question!

Please visit her website for education about seizures, working caregiver resources and tools to find the right care facility:

Robert’s Sister

 

If living outside Austin, Texas, please consider donating any equipment that is no longer needed to the organizations below.  They will repair them as necessary and give them to persons young, elderly or disabled both in USA or in many countries around the world.

Mobility-Advisors  –  directory of organizations

HomeCares  – CA

UCP Wheels for Humanity  – worldwide

Wheelchair Foundation  – worldwide

LifeNets  – Indianapolis

Joni and Friends  –  Agoura Hills, CA

Bridge Ministries  – Bellevue, WA

Salvation Army

Goodwill

CareCure Forums

 

This past Tuesday, I attended a “Get Acquainted with AGE” meeting at Austin Groups for the Elderly.  The group toured the 104-year old historical building to see the different programs that this non-profit organization oversees in an effort to “empower[ing] caregivers, the elderly and their families through education, advocacy, resources and support.”  They have an abundance of useful information on the many aspects of caregiving, as well as one-on-one attention to your particular caregiving situation.  Truly, this is what every caregiver needs!

 

Elderhaven Adult Day Center

I was impressed!  Be it art, photography, crocheting, parties or games, the seniors attending its Elderhaven Adult Day Center have plenty of mindful, social and physical stimulation to keep them engaged and active with a purpose.

Caregiver Resource Center

Through its Caregiver Resource Center, AGE provides family caregivers with information on a variety of local programs, services and resources, a lending library of books and videos, support groups and lends out durable medical equipment such as walkers, canes and bath chairs, among other things.

AGE’s “Austin Computer Learning Center”

Technology-savvy senior volunteers teach seniors how to use computers, from beginners to advanced levels.  These classes are offered at a nominal cost.

“For current class schedules and information on registration, please visit the Austin Computer Learning Center website at www.austincomputer.org or call our ACLC Administrator in the AGE Office at (512) 451-4611 ext 232.”

Non-profit tenants

To help non-profit organizations put their money into their business, AGE offers them low-cost rental of office space.

“For information on the historic AGE Building or to learn more about becoming a tenant, contact Christopher Leto at (512) 451-4611 or email cjleto@ageofaustin.org .”

 

 

AGE: Austin Groups for the Elderly 

As part of their continuing support of the family caregiver, AGE offers free seminars throughout the year to provide guidance and information on how to better deal with their caregiving journey.  Upcoming seminars are listed below.  Please click on the links for more information.

 

FREE Caregiver Seminars:

 

  • Care Options:   Sat., Feb. 25  10am – 12pm

 

  • “The Emotional Survival Guide for Caregivers”:   Sat., April 28  10am – 12pm       Talk, sale & book signing by Barry Jacobs, PsyD

 

Care Options

There often comes a time when a senior may need more care than a family member can personally provide.  This panel discussion will inform participants about additional care options including the benefits of attending an adult day care program, hiring an in-home caregiver, or moving to a residential living facility.  Family caregivers can use the information presented at this event to create a plan that anticipates future care needs rather than reacting to a crisis.  There will also be time to answer questions from the audience.

 

AGE, a local non-profit organization that serves seniors and their family caregivers, invites you to join us for this FREE educational seminar exploring various care options on Saturday, February 25, from 10am until noon.  This seminar will take place in the Dining Room of the AGE building at 3710 Cedar Street, which is just north of the UT campus.  Seating space is limited so please RSVP as soon as possible to Bruce Kravitz at  bkravitz@ageofaustin.org or (512) 451-4611.

 

During the seminar, AGE will also provide free respite care in a separate room at the AGE building. If you are interested in requesting respite care, please call Carla at (512) 458-6305 no later than February 22.

 

“Powerful Tools for Caregivers”

Interested in attending other kinds of FREE classes for family caregivers and seniors?? For information about the “Powerful Tools for Caregivers” classes and other classes near you, visit   www.CaregiverUcentx.org .

 

For more information about AGE, visit www.ageofaustin.org .

AGE: Austin Groups for the Elderly

3710 Cedar Street, Austin, TX  78705

 

Invest in your happiness today!

Positivity and hope do not blind me.  I see all too clearly the reality of my husband’s unrelenting pain and progressive disability.  I see how it affects him, our teenage daughter, me.  I live with the daily reminder of his CRPS, which fills him up with medications and oxygen while it slowly takes away the few things that he still enjoys or can manage to do on his own…  The CRPS that erodes our savings that were meant to be used for retirement, for our daughter’s college education, for anything but medical expenses!  I see all right…

Yet, I acknowledge this change of plans, I accept it, and I pray and hope for a re-adjusted future that includes a different sense of normalcy.  The definitions of what’s important and necessary, and the expectations are realistic using today’s parameters.  But they are only hurdles, not walls; and hurdles are there for us to jump over.  So we jump!

My husband and I decided at the onset of CRPS that we were not going to hold a pity party for ourselves.  We knew that this horrifically painful and debilitating disease, which wreaks havoc in your nervous system and plays games with your brain, would force us to do things differently.  We had no idea of what exactly would come our way, but we were determined to move ahead with our life any way possible.  Of that, we were certain!

Rather than to dwell on what we cannot do, we focus on what we can do.  Does this change his abilities? No.  But since his illness will run its course no matter how we think, then we may as well be positive!  We see no point in taking the dark and gloomy low road, which would only make us depressed and rob us of any pleasantries still possible.  A negative outlook serves no purpose.  It drains your energy, creativity and life.  It cripples your spirit and paralyzes you.  The disease is already trying to do that to my husband’s body.  Why do that to ourselves?

Choose to do the best you can with what you have!

 

Please visit the websites below, which present a positive perspective from which you can thrive.


PositivelyPositive

How to Think Positive

No Negative Thoughts Allowed

I make a difference