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charlesm

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Joined
May 31, 2006
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0
Reason
Loved one DX
Country
US
State
NJ
City
clinton
I'm glad to find this site. Two months ago, my only sister died from als, after four years of severe suffering. the als volunteers were so wonderful to her. I am trying to repay the efforts that these people did for my sister and am looking for a way to volunteer in my area, Hunterdon County, New Jersey. Any ideas. Thanks
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
charlesm

Hi there, Read your post and I think the best way to volunteer your services would be to contact the people who helped with your sister Im so sorry she suffered so much. I'm sure they would be grateful for your services. My son=in-law Jack was diagnosed in April 2006 we see a progression it's so scarey. My daughter is trying everything humanly possible to help him. He has the support of family and many good friends too. Where is Hunterdon ? We live in Forked River, N.J. 8 miles south of Toms River. How did you find volunteers? Please write back like to hear from you. My best to you, Beebe
 

pams

New member
Joined
May 23, 2009
Messages
3
Reason
Loved one DX
Country
US
State
KS
City
Overland Park
Hello

I am new to the site. My mother was diagnosed with ALS in February. She has been living in central Mexico for several years and wants to stay there. She is able to walk very slowly and is beginning to have problems breathing intermittently. Doctors there are not familiar with ALS and there are no other resources there. I have many questions.

Her doctor there prescribed oxygen and an inhaler. I recommended she not use the oxygen and I imagine the inhaler could be counterproductive also, but could not find information about it using google. It sounds like a BiPAP might be helpful. The doctor who diagnosed her at Mayo Clinic mentioned a Cough Assist that could help to exercise respiratory muscles. Does anyone have experience with that?

In light of the fact she wants to remain in Mexico and does not want to travel because of the stress and is tired of medical evaluations, how important is it that she travel to an ALS clinic and what will they offer? Are there other sources of support and information for her in addition to this web site?

Thanks,

Pams
 
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