Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 

 

The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.

Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Caregiver Support and Resource Webinar

Caregiver Support and Resource Webinar

Global Genes will be hosting a series of free webinars in 2013 geared towards educating and empowering our RARE community.

Caregivers Webinar: Taking Care of Yourself While Taking Care of Your Loved Ones
 
November 21, 2013 – 11:00 am PT/12 noon MT/1:00 pm CT/2:00 pm ET (90 minutes)

Register today!

In celebration of Caregiver Month (November), this session will explore the psycho/social aspects of caregiving and provide resources, ideas, and practical advice on how to strike a balance between caring for others and caring for yourself.

Panelists:

• David Milam, Caregiver Spouse to a wife with Pompe Disease
• Gloria Klaesges, Caregiver, Parent to a child with Hurler’s Syndrome, Family Ties Massachusetts
• Kathleen Coolidge, LICSW, Associate Director, US Patient Advocacy, Genzyme, a Sanofi Company
• Lisa Winstel, Caregiver Action Network

Moderator: John Schall, Caregiver Action Network 






Sponsored by:

Adult Onset Niemann Pick Type C

October is National Niemann Pick Disease Awareness Month

• Niemann-Pick Disease Type C in Adults by J. Imrie & J.E. Wraith
• Adult-Onset Niemann-Pick Type C Disease: A Clinical, Neuroimaging, and Molecular Genetic Study
• The Adult Form of Niemann-Pick Disease Type C by Marie Vanier (NNPDF Scientific Advisory Board Member)

Brad & Bart Mackie ~ Adult NPC

Brad (Adult-NPC) & Bart (Adult-NPC) Mackie with their cousin, Dana Wilson in the center

We were recently contacted by Lynn Lambright who wanted to share with the community this video of her son, Brad, with his loyal companion Dusty.

Both Brad (age 53) & his brother Bart (age 51) have adult on-set NPC.  Their mother, Lynne, commented on how they are both courageously dealing with the loss of most of their abilities, yet they have a daily drive to stay connected with family and friends.  

Adult onset NPC is still a new and undiscovered area for, not only the families who have a loved one diagnosed with NPC, but also for the various patient advocacy groups who offer support. This is an area that the NNPDF is working towards offering more services and support to our families and adults with late-onset NPC. 

Letters for Chad Mayo

Chad Mayo (Adult-NPC)

I know that many of you have had the opportunity to “meet” and work with Margaret Mayo over the years on behalf of her son, Chad.  She was a strong supporter of the NNPD foundation's list-serv. She not only looked to the list-serv and the NPD family community for support, but also offered support to so many families, “time-and-time” again, as to her experiences and journey with her beloved son, Chad.  Margaret has contacted the central office to advise that Chad has had a difficult couple of months fighting off a MRSA infection followed by aspiration pneumonia.  

He was first diagnosed with NPC at NIH in 1998 when he was 23 years old.  It has been a long 16 years for all involved and Chad has given an heroic fight, but is now quite ill and has gone home with “comfort care” through hospice.  His family has asked that the NPD family community do one last act of kindness on behalf of Chad. Please see their message below:

*October 10th, 2013* Family Request for Chad Mayo, NPC, age 39 years. 

Parents: Margaret and William of Pennsylvania ~ members of the NNPDF.

Dear friends and family.

My brother Chad Mayo is in the final stage of his fight with with Niemann- Pick Type C. I am asking that all those that have had the pleasure of knowing Chad lift him up in prayer. I would like to have Chad's final days filled with love and kind words letting him know that his life had such great meaning. If you would be so kind to take a minute and send a card or write a letter letting him know how his smile made you feel, we will be sharing all the notes, cards and letters with him as them come in.

Please Mail to:
1175 Muhlenberg Ave
Swarthmore, Pa 19081

Thank you in advance! The Mayo Family

Click this link to read Chad's Story

Living with Niemann Pick Type B

October is Niemann Pick Disease Awareness Month

So much of this blog is devoted to Type C, the variant that Dan had.  But there are other types.  Below is a booklet published in the United Kingdom about Type B, which is the non-neurological type of Niemann Pick Disease.

I invite my Type B friends to provide their thoughts in the comments (if they want).

A Practical Guide to Acid Sphingomyelinase Deficiency - Niemann Pick-Disease Type B 

The Niemann-Pick Disease Group (UK) in tandem with an educational grant from Genzyme, A Sanofi Company, developed this guide with the help of parents and caregivers of children, young people and adults affected by Acid Sphingomyelinase Deficiency (ASMD) NPD Type B. 

A Practical Guide to Living with ASMD Niemann-Pick disease type B (NP-B) aims to provide practical information, reassurance and support to those living with ASMD NP-B. The NNPDF is thankful to the NPD Group UK for making this booklet available to our US and Canadian families. 

Click here to view the ASMD Booklet

What if ?

This was my horoscope from a few days ago:

Is there a chapter from your life that you would love to dramatically revise? Do you keep mulling this thought over and over in your mind, wandering "what if" I did it this way or that way? If so, you surely know that you cannot rewrite history. You cannot remove that chapter and replace it with something else. But what you can do is go back over it (but not obsessively) and try to draw some kind of wisdom from it. And then, instead of trying to rewrite what can't be rewritten, write a new and wonderful chapter that will incorporate what you learned. -- Copyright © DailyHoroscope. http://bit.ly/DHmobile

 ****
I'm sure all of us have some chapter in our lives that we want to rewrite.  But since we can't we need to learn from it and move forward.

For me, there are so many things I would have done differently with Dan.  Some decisions I made because I didn't have enough information to make a better decision.  Other decisions were made because I didn't have enough time to make a decision. And still other decisions were made because I didn't fight for what I wanted.  But I can't go back now, I can't save my baby boy.  I have to live, learn, and share my new knowledge.

This is why I created a group for parents of kids with special needs of any kind.  We share information with each other that you can't get elsewhere, like what does Medicaid cover or who to contact for some particular equipment.  We share resources like places that are wheelchair accessible or online resources or classes on how to advocate for the services your child needs in school.

This is also why I wanted to give back to the Niemann-Pick Disease community. I joined the Board of Directors to be a vocal voice for all the families that don't know what they are dealing with.  To provide assistance and guidance to those who are newly diagnosed or are overwhelmed.

Take a minute and re-read the horoscope above and think about what you can learn from the chapter of your life that you want to rewrite.  And how you can incorporate those lessons to your next chapter.

Looking back

I just looked back at some of my first blog entries.  Much has changed in the year or so since I started writing.  

In some ways I want to go back to those days.  In other ways I don't.  

Shortly we will be on the road again for this year's Niemann Pick conference. A time to learn a lot, hug many, make some new friends and say goodbye to those we lost since last year.

So much has changed yet so much has stayed the same.  The research continues but a clinical trial has started for a treatment.  More families are interacting on social media, sharing experiences and information. But we are still losing kids. And doctors are still not diagnosing it timely to help them enjoy their lives.

I do what I can.  Educating people who ask about by Persevere wristband.  Sharing our experience with Dan with other families. Trying to provide resources for other families. 

But it is an up hill battle when some in the medical community don't trust parents or patients to know information and be right.  We were incredibly lucky, in that Dan's pediatrician listened to our concerns and our wishes and helped us as much as he could.  But I see other families without that support. 

Especially in rare diseases, the patients or parents or primary caregivers become the experts.  Just because we don't have a medical degree doesn't mean we don't understand the medical world and test results and medical terminology. 

So where am I going with this? I don't really know.  I guess in some ways life is the same since I started writing, and in others it is different.  But life does go on, no matter what.

Ducks for Bucks - a fun way to help

What is Ducks for Bucks?

Breann's Story

Ducks for Bucks is a 501(c)(3) non-profit organization that was created in memory of Breann Chavez who passed away at the age of three from Niemann-Pick Disease, type C (NPD-C).  All money raised goes directly into the hands of families caring for children with NP-C, so they can personally apply it towards their greatest need at the time.

Our goal is to raise money for families who are still in the fight against this terrible disease.  Families faced with NP-C are looking at a very short amount of time with their child.  We would like to help them alleviate some of their financial burden so they can focus on enjoying the few years they have with their child.

Over the past few year Ducks for Bucks has had the privilege of helping these families with equipment needs, medical bills, and sadly, even funeral expenses. We also help provide travel expenses, allowing families to get to the Annual Niemann-Pick Disease Family Conference.  Here, families can network with other families and share ideas for caring for their terminally ill children.  With all the different complications associated with this disease, and because of the lack of experience most doctos have with this rare disease, this service becomes a life line for many families.

Ducks for Bucks also works together with the National Niemann-Pick Disease Foundation to help provide an  Equipment Exchange Program for NPD families. This program allows families to share costly equipment that they no longer need with other families who can benefit from the equipment.  http://www.nnpdf.org/familyservices_09.html

 How to Help?

The first Saturday of every June, we have our Annual Family Fun Day.  This is a day where we raise both awareness and money for our families.  It is held at Wines of the San Juan in Turley, NM (30 miles east of Farmington)  from 12-5pm.   There is live music, wine tasting, food, carnival games, horse riding, a silent auction, raffles, and everyone's favorite -The Dainty Duck Dash.  This rubber duck race is a local favorite with a $1000 first place prize.  We are always looking for sponsors to make this event possible.  If you would like to be a sponsor for this event or would like to pass the information on to you someone, you can download this year's brochure.


2013 Bucks for Bucks Brochure

All sponsors are fully recognized on day of the event.  If you are interested please let us know right away so we can be sure to recognize you on the posters and shirts.   You may also contact us by email

lisa@ducksforbucks.org
alex@ducksforbucks.org

   Buy a Duck - The Dainty Duck Dash is a rubber duck race that takes place at our Annual Family Fun Awareness Day.  Ducks are $5 each.  Ducks race in heats of 250 ducks at a time.  Winner of each heat qualifies for the final race.

1st place - $1000
2nd place - $500
3rd place $250 

 For More information on Ducks for Bucks, see their website at www.ducksforbucks.org

 

Needs of Caregivers

A fellow Niemann Pick mom posted this on her facebook page:




So, I followed the link.  It took me to The Caregiver's Survival Network.  From their webpage:

CGSN is the only free online community dedicated exclusively to the welfare of caregivers of any and all physical or mental debility, from Alzheimer’s to cancer to autism to bereavement.

I found their blog - the entry for March 1 starts with:
This March we’re focusing our efforts not only on raising awareness of caregivers for special needs children, but also raising awareness of the special needs of caregivers. We know that it may be hard for family and friends to understand the enormous responsibility of caregiving– we want to help by offering you a “need” that you might have, curated, designed and ready to share on your Facebook page, Pinterest account, blog or through email. There’s no shame in having needs as a caregiver although we know how hard it can be to admit them. We hope the Caregiver’s Special Needs CareCards help you to start the conversation.

Following this text they had lots of photos, like the one above - all asking for different things that caregiver's need.  Some are personal - I need to laugh, I need to vent.  Others are practical - I need groceries.  But they are all needs.  And I'm sure there are thousands more.

Many times caregivers forget themselves in taking care of others.  For whatever reason, caregivers feel guilty for doing things they used to enjoy, or taking time to themselves.  But without taking some time, caregivers run the risk of burn out and not being able to care for their loved ones.

As a friend, neighbor, colleague of a caregiver, please don't just ask what you can do to help.  The caregiver probably will say "I'll let you know!" and then never follow up.  Sometimes it is that it gets busy, other times they don't want to bother the "good samaritan".  But as that friend, neighbor, or colleague take the time to find out what the caregiver could really use - whether it is a pizza delivered to the house, or someone to vacuum the carpets while they are at a doctor appointment.  Then DO IT!  Tell the caregiver that you WILL be helping them - and tell them specificially what you will be doing.  Although the caregiver will probably protest (No, I really don't need the help.  Thanks, but we are ok.), make sure the caregiver is taken care of.

So I challenge everyone - do something for a caregiver, and let me know what it is.

Caring for the Caregiver

At some time or another, we all wind up being a caregiver for someone.  Sometimes for a day or two, but sometimes for years - whether it is an elderly parent or a seriously ill child.


A Caregiver’s Bill of Rights by Jo Horne
I have the right:

• To take care of myself.
• This is not an act of selfishness. It will give me the capability to take better care of my loved one.
• To seek help from others even though my loved ones may object.
• To recognize the limits of my own endurance and strength.
• To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy.
• To know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
• To get angry, be depressed, be anxious and express other difficult feelings occasionally.
• To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt and/or depression.
• To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
• To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
• To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Twenty Ways to Care for Caregivers

• Laugh about something everyday.
• Take care of yourself physically.
• Eat a well-balanced diet.
• Talk with someone every day. Talk to an objective person when issues arise.
• Don’t overload your daily “to do” list – be realistic. Don’t "should" on me and I won’t "should" on you!
• Let family and friends help. Give them printed material on the disorder so they can better understand your relative. Give them a chance. Make specific requests and/or define tasks they can do
• Give yourself permission to have a good cry. Tears aren't a weakness, they reduce tension.
• Exercise. A brisk walk counts.
• Get adequate rest.
• Try a bowl of Cheerios and milk before bed to promote sleep.
• Avoid noisy and/or tension-filled movies at night. The late news itself can add to stress. Skip it.
• Reduce daily caffeine intake.
• Get professional help if you feel your support system isn't adequate or if you feel overwhelmed.
• Take a break every day, even if it's only 10 minutes alone in the backyard.
• Explore community resources and connect yourself with them. Participate in a local support group. SHARE your feelings with family and friends.
• Listen to music.
• Learn relaxation techniques, like progressive relaxation (one muscle group at a time, tense for 10 seconds and then relax) (or bubble baths!)
• Meditate.
• Regularly attend one or more support groups and education workshops.
• Give yourself a treat at least once a month: an ice cream cone....a new shirt or dress....a night out with friends....a flowering plant, or just ask for a hug or kiss (more than once a month!).
• Read your Caregiver's Bill of Rights (and Today's Caregiver magazine)
• Delegate responsibilities.
• Know your limitations. If you wear yourself out, who will care for your loved one, or for you? Caring for yourself is not selfish!
• Give yourself credit! Boost self-esteem.
• Change the way you look at the world (change your perceptions)

Many times friends, neighbors, other family members will say "call me if you ever need anything".  Well take them up on those offers!  Call someone and ask them to get you a gallon of milk, or to pick up the dry cleaning or to sit with your loved one while you jump in the shower.  You will quickly determine who will help and who will not.  You also will quickly find out who will be willing to sit with your loved on and who will run errands to help you.  Some people aren't comfortable being around "sick" people, so ask those people to run errands for you.  Many times people want to help, but just don't know how.  Swallow your pride and the thinking that you can do it all; ask for the specific help.  You will be surprised how much better you feel just by delegating the little things.

It's a bit late...but save it for later

I read a wonderful blog entry on the Children's Hospital Boston web page. 

Weathering the storm with children who have chronic illnesses

Although written for keeping children safe and healthy during weather emergencies, the tips can also be used to prepare adults.

When we received Dan's diagnosis, one of the first things I did was contact my local electric company.  They needed a doctor's certification and several pages of paperwork from me, including the types of equipment I had, the battery backup power of each piece of equipment, and the duration of use each day.  My electric company does not provide generators and could not guarantee that our power would be restored first.  But they have always called us with a recorded message about the impending potentially adverse weather conditions.  There is also a dedicated number to call when the power does go out.  But even if you don't call the dedicated number the account is "flagged" to talk to a representative to make sure the information is recorded properly, including how long we had been out and the current equipment being used.

But don't forget about your gas company too, especially if you use natural gas or propane for heating (for those of us especially in the colder climates!!)

Although it would save some money, I refuse to give up my old copper landline telephone.  I am able to call 911 and they know where I am instantly.  Yes, GPS sensing on cell phones is getting more precise, but if you can't talk, having the immediate recognition form the landline provides just that little bit more comfort.

Three pieces of medical equipment in this picture:

1. Feeding pump (on the pole on the right)
2. Suction pump (just to the left of the feeding pump, partially behind the bed rail)
3. Apnea monitor (small white sensor to the right of the shoes)