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Rae

Member
Joined
Jul 12, 2007
Messages
12
Reason
PALS
Country
US
State
NJ
City
Pennsville
Hi Everyone,
I am new to this- but as my husband's sole caregiver, I have been reading your posts and have found valuable suggestions and help. My husband, Marv, was diagnosed in Sept. of 2005. He started with slurred speech, then difficulty in swallowing and eventually had to have a peg tube inserted Aug. 2006. He lost his speech around the same time as the peg tube was put in and now cannot use his arms. He is still walking, but is very unbalanced when he does. I walk behind him, just in case he starts to go down. We are going to have Hospice come in soon to help me. (against his wishes) and his Doctor has ordered a power chair with head support. His head has dropped and leans to one side, so he has constant neck pain. The worse problem now is his drooling. We've tried Botox injections in his saliva glands (didn't work) radiation on his glands three times. It didn't work either, just burnt a hole in the hinge of his jaw! In the meantime, he has bitten the inside of his jaw and tongue so bad that half of his tongue is gone on one side. We are trying bite guards and if they don't stop his clenching of his jaw, they want to do Botox in his cheek muscle. Of course, that will make his mouth hang open and the drooling will probably be worse! This has all been very hard for him to accept because he was always so active, played sports, raced cars, and built engines most of his life. ALS sucks! Thanks for listening
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi Ray I Too Started With Slurred Speech And Now Have It In My Arms And Walk Fine. Where Do You Live In Nj I Am In Flemington God Bless Pat
 

Citlalli

Member
Joined
May 25, 2007
Messages
26
Reason
CALS
Country
Mexico
State
Morelos
City
Tepoztlan
For the last year and a half my husband Andres has worn a square yoghurt container, fastened around his neck with a shoelace to catch his saliva so he doesn't have to struggle with swallowng so he cannot use neck brace but having the neck support that allows the neck to bend forward helps him to spit. He tried amytriptiline but it drugged him. he doesn't like medication anyway, he is very into awareness. We are ging to try the scopolamine patches if we can get them from the US ( we live in Mexico) But I already know ge wont like him because they will make him feel dull.

I know it sounds kind of awful but isn't it all? Yes ALS SUCKS! this little container has been one of the greatest inventions (by Andres). It has helped him a lot to eat although now he barely tastes a little fruit or ice cream as it all ends up in the container.

I am going to try and post a picture if it is possible so you see what I am talking about.

At night me use wash cloths that I change when ever I flip him.
 

Rae

Member
Joined
Jul 12, 2007
Messages
12
Reason
PALS
Country
US
State
NJ
City
Pennsville
Rae in NJ

The yogurt cup sounds like a good idea! Thanks for the tip. I'm using folded paper towels when he is upright and put a hand towel under his head when he sleeps. He uses a BiPap about 20 hours a day now. We only take it off when I feed him and do his daily bath, etc.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Rae-welcome to the fourm. I am sorry that you guys are going through this awful disease. You've got the right idea though: share what you've learned and feel free to talk about your frustrations, sorrows and joys anytime! Cindy
 

Jiankan

New member
Joined
Sep 25, 2007
Messages
2
Reason
CALS
Diagnosis
N/A
Country
US
State
New Jersey
City
Edison
Hi, Rae

Just join ALS fornum and read your thread.

I am a caregiver for my husband living in Edison NJ. My husband was DX in 07/2002 although symptoms started in the spring of 2001. He is in BiPAP 24x7. He still eats and talks with difficulty.

It is glad to know CALS from NJ. I used to go to Robert Wood Johnson supporting group in New Brunswick and knew couple of CALS. But their PALS all pass away.

Which ALS clinic does your husband go?

Regards
Jiankan
 

Beebe

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

Hi there, Wondered where in N.J. you live, we live in Forked River, quite a few people recently on the Forum not too far from us. You'll find a lot of support and help here. This is the place to go when you are in need of an ear or should I say "EYES" lol. My son-in-law 43 has ALS, my daughter his wife 35 goes to Robert Wood Johnson Hosp. for Cancer Treatment, she was diagnosed with advanced Beast Cancer which spread to the Bone and Liver. We have a handfull since Stephanie did most of Jack's care. Can't do it anymore! One day at a time! My Best to all, Beebe
 

Rae

Member
Joined
Jul 12, 2007
Messages
12
Reason
PALS
Country
US
State
NJ
City
Pennsville
Beebe

Hi there, Wondered where in N.J. you live, we live in Forked River, quite a few people recently on the Forum not too far from us. You'll find a lot of support and help here. This is the place to go when you are in need of an ear or should I say "EYES" lol. My son-in-law 43 has ALS, my daughter his wife 35 goes to Robert Wood Johnson Hosp. for Cancer Treatment, she was diagnosed with advanced Beast Cancer which spread to the Bone and Liver. We have a handfull since Stephanie did most of Jack's care. Can't do it anymore! One day at a time! My Best to all, Beebe

Hi Beebe, Thanks for your note. I live in Pennsville and we went to clinic at Penna. Hosp. in Phila. I lost my husband on Aug. 18th. He got sepsis and was gone so fast I couldn't believe it. You certainly have more than your share to deal with. ALS is such a cruel disease, but to have to deal with your daughter's breast cancer on top of that is so unfair. My brother was diagnosised with lung cancer last year and he just finished his second course of chemo. He isn't married so my sister and I take him for his Dr. visits and chemo. I took care of my husband alone, but we were supposed to have a consult for Hospice, but he passed away two days before our appointment. You should be able to get help through the ALS Phila. Chapter. My prayers and thoughts are with you.
Rae:)
 

Beebe

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

Hello Rae, So sorry for your loss. As a caregiver we understand the day to day stress. ALS Philadelphia sends an Aide 3hrs. a day, Shower and breakfast. The Aide does little else, very lazy. The shower is a great help because Stephanie can't do it. Your town doesn't sound familiar, what is it close to? We are 8 miles south of Toms River. Take care of your self and keep in touch, there is always support here. Fondly, Beebe
 

Jiankan

New member
Joined
Sep 25, 2007
Messages
2
Reason
CALS
Diagnosis
N/A
Country
US
State
New Jersey
City
Edison
Sorry for your loss, Rae.

Please take good care of yourself.

My husband goes to ALSA PA to see Dr. McClusky every two month. That is a wonderful clinic.

JianKan
 
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