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rowland's wife

Active member
Joined
Nov 22, 2008
Messages
34
Reason
Loved one DX
Diagnosis
09/2008
Country
US
State
Arkansas
City
Lamar
my husband was diagnosed in Sept 2008, he has bulbar als, he can no longer walk, feed himself or talk, he doesn't eat alot he gets choked on food, he does not want a feeding tube,but it seems every since yhe first dr visit the only thing she recommended was a feeding tube, she has never once suggested going to a als clinic,when asked how often he should go to see her she was like well just when he wants to when we go they have never even checked his oxygen level the last time they didn't even weigh him,the dr makes me feel like all well hes gonna die anyway, no suggestions on what to do to help things keep from getting worse sooner,such as hands braces or walking nothing. I read on here about all the als clinics people go to they seem so helpful, I wonder why the dr didn't send my husband to one. Also he has alot of pain in his neck and shoulders, we call the dr repeatedly about the pain and lately it has gotten worse he takes hydorcod tizanidine ultram and lyrica, most of the time it doesn't help does any one have any ideas of what pain medicine might help? the hydrocod work the best but she won't give him enough to last all month, she says he takes to many, and she is concerned of how it will effect his respritory, but the last time he took a overnight pulse ox test he didn't need oxygen, does any one know about pain meds and respritory effects? he says he is ready to die because he can't walk anymore all he can do is smoke and drink coffee and his left hand is getting weaker and sometimes I help him to do that,I can't help but feel if the dr would have given more hope and support maybe he would have tried harder to fight and not give up. It is very hard seeing him this way and if he doesn't start eating more he will only get worse.
 
I am so sorry about your situation. Are you close to an ALS Clinic? Have you contacted your local ALS Association or MDA for assistance?
 
It looks like the nearest one to you is according to which way you would go it looks like from 2-2 1/2 hrs away.

Northwest Arkansas Partner
1113 West Poplar
Rogers, AR 72756
479-621-8700
866-540-7411
479-621-8701 (fax)
 
Some Neuro's just do write you off. They've never seen an ALS Clinic in action so have no idea what is available. I'd get a referral to one if you can. It might help make what time your husband has left a little more enjoyable.

AL.
 
Do you have to have a referral? If not, pick up and go to the clinic that georgia has suggested! This isn't right! Your husband should be given help with quality of life issues! As you know from reading this website there are things to help pALS. Give that neuro the boot if you can!
 
Sounds like a Loma Linda Dr. I know.
 
Sounds like the jerk that gave Glen his original diagnosed. Go find yourself an ALS specialist... .you'll be amazed at the difference. For a diagnosed like ALS most insurance will pay for (and actually encourage) a second opinion. Have you registered with the ALS Association in your area? You'll be assigned a care manager who will be very helpful getting you in touch with the right people.
 
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