A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, March 30, 2013

Needs of Caregivers

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

Photo: 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 http://bit.ly/15nys9C


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.

Friday, March 29, 2013

An Angel

I received word, that another child has lost their battle with Niemann Pick Disease.

Taylor Marie Wauters was 11.

Her obituary is here (funeral home): http://www.hrabakfuneralhome.com/sitemaker/sites/HRABAK1/obit.cgi?user=956210Wauters

(newspaper) http://thegazette.com/obituaries/wauters-taylor-marie/


Thursday, March 28, 2013

Religious Time of Year

Religion and politics are two topics of conversation that polarize many people because of strong beliefs by those involved. So I'm not getting into a religious discussion today.

However, this week is religiously important for two different faiths:

Jews: Passover (March 25-April 2)
Catholics: Easter (March 31)

Growing up I was fortunate to be able to participate in both faiths and celebrate both "holidays". And many times the Passover Seder fell on or around Good Friday. Some call it a coincidence, others call it divine involvement. But whatever it is, here is a bit about both events (information obtained from Wikipedia).

Passover is an important Biblically-derived Jewish festival. It is the first of Judaism's Three Pilgrimage Festivals , the other two being Shavuot ("Pentecost") and Sukkot ("Tabernacles").

The Jewish people celebrate Passover as a commemoration of their liberation over 3,300 years ago by God from slavery in ancient Egypt that was ruled by the Pharaohs, and their birth as a nation under the leadership of Moses. It commemorates the story of the Exodus as described in the Hebrew Bible especially in the Book of Exodus, in which the Israelites were freed from slavery in Egypt.

Passover commences on the 15th of the Hebrew month of Nisan and lasts for either seven days (in Israel) or eight days (in the diaspora). In Judaism, a "day" commences from dusk and lasts to the following day's dusk (approximately 24 hours), thus the first day of Passover only begins after dusk of the 14th of Nisan and ends at dusk of the 15th day of the month of Nisan. The rituals unique to the Passover celebrations commence with the Passover Seder when the 15th of Nisan has begun. In the Northern Hemisphere Passover takes place in spring as the Torah prescribes it: "in the month of [the] spring" Exodus 23:15). It is one of the most widely observed Jewish holidays.

The Passover begins on the 15th day of the month of Nisan, which typically falls in March or April of the Gregorian calendar. Passover is a spring festival, so the 15th day of Nisan begins on the night of a full moon after the northern vernal equinox.


Easter is a Christian festival and holiday celebrating the resurrection of Jesus Christ on the third day after his crucifixion at Calvary as described in the New Testament. Easter is the culmination of the Passion of Christ, preceded by Lent, a forty-day period of fasting, prayer, and penance. The last week of Lent is called Holy Week, and it contains the days of the Easter Triduum, including Maundy Thursday (also known as Holy Thursday), commemorating the Last Supper and its preceding foot washing, as well as Good Friday, commemorating the crucifixion and death of Jesus. Easter is followed by a fifty-day period called Eastertide or the Easter Season, ending with Pentecost Sunday.

Easter is a moveable feast, meaning it is not fixed in relation to the civil calendar. The First Council of Nicaea (325) established the date of Easter as the first Sunday after the full moon (the Paschal Full Moon) following the March equinox. Ecclesiastically, the equinox is reckoned to be on 21 March (even though the equinox occurs, astronomically speaking, on 20 March in most years), and the "Full Moon" is not necessarily the astronomically correct date. The date of Easter therefore varies between 22 March and 25 April. Eastern Christianity bases its calculations on the Julian calendar whose 21 March corresponds, during the 21st century, to 3 April in the Gregorian calendar, in which the celebration of Easter therefore varies between 4 April and 8 May.

Easter is linked to the Jewish Passover by much of its symbolism, as well as by its position in the calendar. In many languages, the words for "Easter" and "Passover" are etymologically related or homonymous.  Easter customs vary across the Christian world, but attending sunrise services, exclaiming the Paschal greeting, clipping the church and decorating Easter eggs, a symbol of the empty tomb, are common motifs. Additional customs include egg hunting, the Easter Bunny, and Easter parades, which are observed by both Christians and some non-Christians.


So you can see how the two faiths and the holidays intertwine: both are in the spring and are tied to the full moon  after the spring (vernal) equinox.  So that leads me to the only question I am going to ask: Are we really all that different???

Monday, March 25, 2013

5 for Five - Week 12

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.



FantasticallyAverage




Last week's goals:
1. Finish an online education class for my accounting license.
        Done!
2. Trim the plants.
        Done!
3. Do some more decluttering.
        A little, but not enough to consider this a success.
4. Set up an Elks area in the house for hubby.
        Nope.
5. Read 5 newspapers (on the bottom of the list and maybe a manageable goal this week)
        Did this - and think I read about 8!

Three for five this week - and I got those plants done!!!

This week's goals:
1. Do some more decluttering.
2. Set up an Elks area in the house for hubby. (see post coming soon about this)
3. Read 10 newspapers.
4. Drink more water during the day.
5. Use my juicer.

I think this week is fairly doable - at least I hope so!

Friday, March 22, 2013

This is spring??

According to the calendar, spring started on Wednesday. That may be, but it sure didn't look that way in my yard!





Yup - that is snow! We had 12 inches of the heavy wet white stuff fall on Tuesday.

Yes, it looks pretty. But I would rather have it in December and January rather than March.

Tuesday, March 19, 2013

Repost - Webinar - Understanding Drug Development - MARCH 20

RARE Webinar Series

Global Genes will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.
Upcoming Webinars
Understanding Drug Development: Opportunities for Rare Disease Patients and Advocates to Speed Development of New Therapies
Register here! - March 20, 2013, 11 am Pacific Time

Rare disease drug development is a long and costly process. Though estimates vary widely, it can take as much as $1.5 billion and 15 years to bring a new drug from discovery to the marketplace.  Today, a new world of open source biology and crowd funding give many patient advocates the ability to enter the drug development world. Could a patient’s family, frustrated by the lack of industry interest in a disease, go out and fund research and drug development that could put treatments and cures in reach? The first step is to understand the process of drug development and the points at which you can get involved to accelerate the process. There are many entry points within drug development where patient advocates can and should take an active role, all the way through the FDA approval process.

Panelists include: 
  • Scott Johnson, CEO, President and Founder of the Myelin Repair Foundation
  • Dr. Kenneth Kaitin, Director, Tufts Center for the Study of Drug Development
  • Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach

Sleep, oh beautiful sleep...

I don't know if it is the time change or the weather.

I do know that sleep has been few and far between lately. No matter what time I go to bed, I will sleep about 3 hours and then be awake for 3 hours.

It took a few days for me to figure this pattern out because I was waking up about 2am and twisting and turning until 5am. Of course when the alarm went off at 6am I was miserable.

So a few nights ago I slept on the couch from 8-11pm and was awake from 11pm-2am. Fell back to sleep and actually felt pretty good when the alarm went off in the morning!

Boy I sure hope my body starts adjusting to whatever it was that triggered this crazy sleeping pattern!

I've had warm milk and chamomile tea suggested to me as remedies, but who wants to start cooking at 2am??

I've tried laying in bed, getting up and watching something boring on tv, reading, white noise, nightlights, total darkness - all without success until that 3 hour window is up.

There are many things I'm thinking about, but nothing really new in the past few weeks, so I don't think that is the cause. I don't remember if I'm dreaming, so I don't know if something is waking me.

Any other thoughts or ideas???

Monday, March 18, 2013

5 for Five - week 11

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.



FantasticallyAverage




Last week's goals:
1. Read 10 newspapers.
      Nope - not even 1! :(
2. Trim the plants.
       Nope.
3. Do some more decluttering.
       Did do some of this....
4. Write some regular blog posts.
        I wrote one, it will be posted tomorrow.
5. Finish an online education class for my accounting license.
       I started it, it is due this Thursday, so I really, really have to get it done!!

Ok, that was another bad week....I really need to change this around....  With a snowstorm predicted for Monday night and into Tuesday morning, maybe I will have some time to actually do some things.

This week's goals:

1. Finish an online education class for my accounting license.
2. Trim the plants.
3. Do some more decluttering.
4. Set up an Elks area in the house for hubby.
5. Read 5 newspapers (on the bottom of the list and maybe a manageable goal this week)

Thursday, March 14, 2013

5 for Five - Week 10

(Add on - I thought I published this Monday, but I guess I didn't...so here it is now, on Thursday!)

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.



FantasticallyAverage




Last week's goals:
1. Read 10 newspapers.
              Read 4.
2. Trim the plants.
              Still need to do this, poor plants.
3. Do some decluttering.
              Did a little bit of this
4. Write some regular blog posts.
              Wrote two (here and here)
5. Order one FREE credit report for each of us. (www.annualcreditreport.com)
               Done!!!

Well, that was a little bit better....now let's see if I can get those plants done this week!!

This week's goals:
1. Read 10 newspapers.
2. Trim the plants.
3. Do some more decluttering.
4. Write some regular blog posts.
5. Finish an online education class for my accounting license.

Tuesday, March 12, 2013

Webinar - Understanding Drug Development

RARE Webinar Series

Global Genes will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.
Upcoming Webinars
Understanding Drug Development: Opportunities for Rare Disease Patients and Advocates to Speed Development of New Therapies
Register here! - March 20, 2013, 11 am Pacific Time

Rare disease drug development is a long and costly process. Though estimates vary widely, it can take as much as $1.5 billion and 15 years to bring a new drug from discovery to the marketplace.  Today, a new world of open source biology and crowd funding give many patient advocates the ability to enter the drug development world. Could a patient’s family, frustrated by the lack of industry interest in a disease, go out and fund research and drug development that could put treatments and cures in reach? The first step is to understand the process of drug development and the points at which you can get involved to accelerate the process. There are many entry points within drug development where patient advocates can and should take an active role, all the way through the FDA approval process.

Panelists include: 
  • Scott Johnson, CEO, President and Founder of the Myelin Repair Foundation
  • Dr. Kenneth Kaitin, Director, Tufts Center for the Study of Drug Development
  • Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach

Thursday, March 7, 2013

Updated: Angels Watching Over Us

Sorry that my first "real" post after my month of Rare Disease Posts is not an upbeat one.

The other day I found out that we lost another child to Niemann-Pick Disease.  "Chase" Jackson was 13 years old and had spent the last few weeks in the hospital.  Services for him are in Arkansas on Friday evening and Saturday afternoon. Here is the link to his obituary.




On a slightly brighter note, today is the 8th birthday of another little boy who lost his fight with NPC.  Little Zachary only was here for 3 months.  To remember his birthday, and to honor him, his mother has asked that everyone to wear green or notice something green in their surroundings today, March 7. 

From her Facebook event:
Please honor our special little Angel in hevean by wearing green or noticing anything green in your surroundings and take a picture for us, thank you so much in advance for all who participate...




You never "get over" losing a child, and sometimes the passing years make it tougher.  Please remember these families today, and all those families who have lost a child for any reason.

Monday, March 4, 2013

5 for Five - week 9

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.



FantasticallyAverage




Last week's goals:
1. Read 10 newspapers.
   I read 13!
2. Trim the plants.
   Watered them, but haven't trimmed them yet.
3. Do some decluttering.
     Thought about this, but didn't get to it.
4. Write some regular blog posts.
     Have some ideas, but no posts yet.
5. Order one FREE credit report for each of us     Totally forgot about this one.


Ok.  I need some motivation to get some of these things done.  I seem to be focusing on one item (the newspapers) and forgetting everything else!  So let's try this again!


This week's goals:
1. Read 10 newspapers.
2. Trim the plants.
3. Do some decluttering.
4. Write some regular blog posts.
5. Order one FREE credit report for each of us. (www.annualcreditreport.com)