We need to band tighter together!

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donnah

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To all the PALS & CALS & MND people in this forum,
This is my wish for all of us..... We all come from all over the world but we need to knit a tighter stich we need to reach out to others in our area to help one another. I have found out that my dear Stephanie wife caretaker and the most important person to Jack (PALS) has cancer. I'm reaching out to all who can spear time in our area to help out (Ocean County New Jersey). I know most of you think I'm nuts for asking but...... I have a friend no, I , we have a family member, caretaker to one of our PALS down, and she and her family need our support and spare time.

I think we should start a registry name address and phone numbers to let each other know how close or how far we are from one anther so when we face situations like this we can support and help each other.

Something to think about... its important to stick together and help not just with words but with our time I know most think that they have none to spare but, you do

I'm glad I registered with my town & state or I would have never got to meet my new family.

Please everyone think about it.....; and for those who disagree please no angry PM's



Donna H
Barnegat, NJ
 

CindyM

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Hi Donna- Beebe told us about Stephanie. How terrible! I ike your idea. This site is definately the best place on the internet for support and encouragement. Cindy
 

ajf

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I totally agree

My father passed away 3 weeks ago and I have vowed to dedicate my life to this horrific disease. I moved home after 10 years to take care of him due to my mothers alcoholism. I will never regret my decision. I am in the process of trying to figure out how to start a nonprofit that lends wheelchair accessible vans to every PALS and family who wants one for free. Many PALS cant afford one, especially since it sadely won't be needed very long. If there was a registry I could see how many families need one and inturn try my hardest to get them on. If you have any advice check out my post titled "i'm going to post this untill...

Kate
 

Lorie

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I Agree Donna

When I view a lot of Profiles. They don't have where they are located. I put in on a post one day where I live and it caught Capt. AL's and Sherry's attention. He PM'd me. We don't live very far from one another. Sherry and I live in the same State. I Wish more people would add that to their profile.

Atleast State or Province.

Lorie:-D
 

Beebe

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Care for those in need

If anyone can get something going it's Donna. I have great ideas if only I could keep the ball rolling. The Brain gets tired!lol So far we are covering 24 Hours but, if one person can't help we need back ups. It's mostly family members. Stephanie can't do anything for Jack right now , she is managing herself, which is a strain. Can't imagine what will happen when she starts her treatments. We'll make it thru. Fondly, Beebe
 

jeffrey

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None of us is as good as "all" of us

eHope is a startup non-profit organization located in Portland Maine - www.eHope.nu. We facilitate the day-to-day care provided by family, friends, neighbors and co-workers for families caring for a loved one with ALS. In cases where few caregivers exist, we collaborate with community-based organizations to recruit volunteers who step forward to assist in that care that care.

Each family is provided a trained eHope volunteer who facilitates an intitial face-to-face meeting with the family and their extended circle of care, and then leverages the web to streamline the flow of day-to-day communication in a way where no one's life is pulled out of balance and each of the familiy's non-medical physical, emotional and social needs are met. Each of our services are provided free-of-charge.

We currently support 11 ALS families and actively participate in ALS support groups throughout the State of Maine. We are interested in carefully and thoughtfully expanding our ALS care throughout New England and into other regions of the country.

It is our strong conviction that as critically important research presses forward in the effort of finding a cure for ALS, the development of innovative care models are equally important in assisting families with coping with the here-and-now reality of caring for a loved one who faces this dibilitating disease.

Here is a link to a news story from the local NBC television afiliate in Portland Maine which details eHope's services in support of 2 our ALS families:

http://www.wcsh6.com/news/article.aspx?storyid=63267
 

saska

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Jeffrey, eHope sounds like a wonderful endeavor! Donna, I think your idea is a great one. I've edited my profile to include the city in Colorado in which I live (Lakewood, in the Denver area). And while I was at it, I added a profile picture of Saska, my forever angel :). Beebe, I wish I lived close to you so I could help out...... Sharon
 

hboyajian

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Dear Donna, You are right, this is a second family. You, for one, are an incredible and very giving member of it. I am so sorry to hear about Stephanie and her battle with cancer that has just begun, though glad that the doctors say at this point it is treatable. And it is true that many of us fill up our lives and feel so busy, but that the most important thing is to make time and care for the people around us. I have found small ways to do things for a few people in my community (not with ALS, but 95 years old and another person with cancer). I could definitely do more, and must find the way.

Oh Beebe, I am so sorry about your daughter. You have had such a heavy load, and now this, my heart goes out to you. It sounds like you have a very caring community around you. That will make all the difference as you travel this hard road.

Jeffrey, What a great thing you are doing! You have found a way to connect people and it is fabulous! The huge needs of ALS can overwhelm a family, let alone a person with little support in their lives. And yet there are many caring people in our communities who just need to know where they can help and get enough training to do it well. Thank you.
 

Beebe

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oce
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new jersey
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forked river
Thank you

Isn't this Forum a wonderful place to be a part of, of course it's the caring people that make it that way. You all help with your words of kindness and HOPE. Fondly, Beebe
 
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