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creesmith

Member
Joined
May 12, 2013
Messages
11
Reason
PALS
Diagnosis
01/2013
Country
US
State
Georgia
City
Savannah
My husband who is 56-years-old was diagnosed with ALS Jan 31, 2013. He already has lost lower function and is wheelchair bound. His upper strength is deteriorating as well. Speech is still good, but voice changing and breathing more difficult with coughing. We are getting up 4-5 times per night because he has urinary urgency (uses urinal) and bedside commode. He gets scared because he is short of breath. He cries a lot more and talks a lot about dying. He doesn't want to leave the house and seems depressed. We return to Mayo next week and I am hoping to get some breathing assist as well as hospital bed order. My children (3) are a great deal of help and support. I have to work because of insurance and cannot be with him during the day except at lunch. I guess my question is, he is progressing so fast and I know no one can tell me how much time he has, I am scared because of the progression rate. Any thoughts out there? Sorry for the lengthy post.

cree3306
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Dear Cree-It is scary to watch someone you love progress with this horrible disease. He has a lot going on right now-- and your job is to help get everything straightened out and help him as much as possible to make everything as easy as possible.

make sure you write everything that is going on down before your appt. you don't want to forget anything. most important is his breathing--they will test it and possibly get him on a bipap to help out. they can put him on anti-depressants which many pals take (they are going thru so much!) and there is a drug called neudextra which is great for the emotional liability he is experiencing (crying and laughing uncontrolled) .

I have to work too--and there is not a good solution to leaving him alone. most caregivers work something out--be it paid caregiver, family, friends or what ever they can do. it is very hard! I hope you are already on SS and disability and medicare--that will help a great deal.

please stay in touch-- we will help as much as possible! Hang in there, and don't forget to also take some care of your self!
 

creesmith

Member
Joined
May 12, 2013
Messages
11
Reason
PALS
Diagnosis
01/2013
Country
US
State
Georgia
City
Savannah
Barbie,

Thank you so much. It is so relieving to talk with someone who knows what we are going through.

Cree
 

caldona

Distinguished member
Joined
Mar 6, 2011
Messages
390
Reason
PALS
Diagnosis
01/2007
Country
US
State
Ar
City
Mtn. Home
Call his doctor and have them to get him a bipap st it will help his breathing get a nasal mask it will give him more freedom during the day probably will need a face mask for night
 

creesmith

Member
Joined
May 12, 2013
Messages
11
Reason
PALS
Diagnosis
01/2013
Country
US
State
Georgia
City
Savannah
Thanks. I called them today and they are setting me up.
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
633
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
i have seen what depression does. get him out of house, attend support group meetings, go to als multi-discipline clinic. find out what others are doing that they believe extends life expectancy. latch on to one and give it an extended try. please sign up to be a drug trial volunteer. those of us over three years can no longer participate. we now depend on those recently diagnosed to pick up the slack. remember the three rules, strong belief system, hope, and positive mental attitude. peace and success
 

creesmith

Member
Joined
May 12, 2013
Messages
11
Reason
PALS
Diagnosis
01/2013
Country
US
State
Georgia
City
Savannah
Dear Pearshoot:

Thank you so much for your reply. Unfortunately, there are no support groups here, but we are going to the multi-discipline clinic next week. I agree with you, depression is just giving in to this monster of a disease. My heart goes out to you. Stay strong. Praying for a cure..
 

RLCarlson

New member
Joined
Jun 4, 2013
Messages
8
Reason
CALS
Country
Uni
State
NC
City
Raleigh
Was your husband a vet? What insurance do u have? The reason I am asking is because if its in your policy or he is a veteran he can possibly qualify for private duty nursing... Then at least you and he would have help with the caregiving portion. The right agency could also help manage his clinical needs. The other piece to that depends on what state you reside in. It looks like Georgia I will contact a friend of mine that's in Georgia and post on here again more info for you.

Robin
 

creesmith

Member
Joined
May 12, 2013
Messages
11
Reason
PALS
Diagnosis
01/2013
Country
US
State
Georgia
City
Savannah
Robin,

Thanks so much. My husband is not a vet, but you are right, we live in Georgia. Since my post, my husband has rapidly declined. His PFT's are <43, down from 77 just 2 months ago. We now have a hospital bed, Bipap, and catheter with a cough assist on order. He is having laryngo spasms as well which adds to the breathing discomfort. We went back to Mayo last week to the clinic and he just seems to be spiraling. Home health is now stepping in and we are going to have palliative care at home. I intend to keep my husband at home and hopefully between me and our three children we can hold off on private duty care for a little while. I have been told by my case manager to prepare for FMLA leave. I am so afraid. We have been together 39 years, married for 36. He tells me he just wants it to go away. The only up side to this is that his speech is still good and he has some right arm strength. I know my story is like so many others, but it is so hard to see him just lie in the bed or be lifted to his chair. I feel guilty about getting out and going to work, but that is not a choice right now. Thanks for posting and sorry for the long reply. I will get better at this. Cree
 
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