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jaketheo

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PALS
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ma
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chelsea
As previously discussed in this forum we are building an ALS Residence. I am enclosing a link regarding the ALS Residence to be built in Boston. The video might answer many questions individuals may have .YouTube- ALS residential living...
 

quadbliss

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07/1998
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Benicia
Awesome! I hope this facility becomes a reality. It could be a prototype for similar homes across North America. Perhaps providing a motivation to move forward, for those without a strong family/friend support system. :-D
 

CindyM

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Hi Jake- I have been watching this project with interest. WHen you hold an open house I hope to stop by...

And after watching the video I am inspired to donate!
Cindy
 
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Clbrink

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Messages
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Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
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My Dream

My Husband was diagnosed 3 years ago; it has been a long journey, many ups and downs. When he was diagnosed he was only 36, we had a 4 month old daughter and a 7 year old daughter, and it was difficult in many ways. There are many great services and support groups here in Canada, but my husband did not want it, with time he realized that we needed it, every new development is a challenge, but we have learnt a lot!
We as a family tend to fall through the cracks, most services are geared to seniors, and many services would separate the family, should he be placed in a long term care facility.

There are many problems that we have encountered along the way; my question is why there are no facilities that address the family as a whole? I would love to investigate this problem further and follow a similar model as this residence, something like a compound, with homes for families, and maybe a building for "single" PALS. A community, that has it all, along with support for the family as a whole.

I would love to hear your ideas, and to have any help with building this idea, this dream.
 

jaketheo

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chelsea
Our Residence is being designed for the families as well as the resident. Every resident will have a private room where a guest could stay over from time to time. I am not sure that most families and PALS would want to all move to an ALS community. In our residence families are encouraged to have meals together and be involved in the daily routine as much as possible. We see the residence as a safe home for the PALS while letting the families try to resume a more stable household. Three PALS are assisting with the design of the rsidence however your concerns are most appreciated. Any advice folks can offer us will be helpful.
 

Clbrink

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Joined
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Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
My belief is that if there is support, young families should stay together, that is why I want to pursue the idea. There are many reasons that I feel this way, many from my own experiences, and many through some research that I have done.

Do not get the wrong idea, what you are doing is AMAZING, there is a real need!

Does anybody have statistics on Pals: how many marriages break up? what the rate of bankrupcy for PALS is? what the psychological effect is on all members of the family. I could go on with thousands of questions regarding the effects of ALS on the PALS and their families.

The more options available the better. Why are we sitting and waiting for a crisis, to the point that a family is torn apart due to lack of support, lack of funds, lack of options? Why would I put my 39 year old husband in a long term care facility with only seniors? He looks forward to his morning kisses from his daughters, the hugs, the love. I believe that the mind is very strong, if I put my husband in a home, he would just give up.

What is normal or stable?
 

jaketheo

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Messages
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PALS
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US
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ma
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chelsea
Once our house is open and functioning as a real household we will be looking into designing a house in every state that wants one. Steve Sailing is going to be taking the lead on this venture while using his skills as a professional architect.The model you describe perhaps will be built in a certain community someday. As long as we all think and work towards meaningful living enviornments these houses will be a reality.
 

CindyM

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Does anybody have statistics on Pals: how many marriages break up? what the rate of bankrupcy for PALS is?

I would be interested in these stats as well. My guess is the numbers might not be significantly different per capita than for the regular population. Families cope, or not cope, with any number of life-altering events. Some stick together thrrough cancer, bankruptcy, major loss of trust, whatever. Some break apart. I hope my own will grow stronger. Cindy
 

Thumbs Up

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Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
I hear you. I lost my mother in Feb 1992 then my sister was dz a couple of months later, May 1992. She died Jan 1996. We now have 2 cousins with ALS. We have 8 confirmed and some not dzs. Since I am now retired I am trying to get back into the ALS support group in Brampton. I want to be of help to someone.

God bless

Norma
 

CindyM

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You are helping with your posts, here, Norma. We appreciate it. Cindy
 
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