neuro visit waste of time n money

Status
Not open for further replies.

cukita99

Distinguished member
Joined
Jun 12, 2007
Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
i have been the same 4 over 2yrs now. visit the neuro on thursday. all he does is ask if there is something he can do 4 me. he is suppose 2 know what to do.. he wants me 2 get a suction machine n feeding tube but i do ok with out them. every visit is a wait of 3hrs n 80 dollars to hear the same thing. im in no medication n just live with GOD faith n blessings. i take each day at a time. one thing that worries me is my helper that wants more money n i just dont have it. wish i had some other help that didnt cost so much. my son helps but he cant bathe me or cook which is hard. my parents help but cant do it full time. i hate the fact that i cant do any thing. sorry i guess im feeling sorry 4 myself.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
cukita99,

You have every right to feel sorry for yourself, I have read your posts.

Can't you get help from the als assoc or mda. From what I understand in certain situations they will send someone
to your home for 3 hrs per morning to help bathe you and take care of you. And I know the AlS assoc has helping hands, which is students who volunteer 2 hrs per wk doing whatever you want them do
(not hygiene, or admin meds etc.) straighting the house, yard work, etc. Wasn't someone supposed to come to do a home visit awhile back and you didn't know if they were ligit. What happened?
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I agree the neuros are a waste of time I see a team every three months And its a learning experience for them Not me! They watch you get worse. They dont have a clue what to do. Yes the MDA does help with euipment frm the loaner closet and the PT gives you some exrcises and the speech therapist tells you how to swallow to prevent choking.

it is mainly a expensive and long day. With alot of empty promises

Pat1
 

cukita99

Distinguished member
Joined
Jun 12, 2007
Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
crystal n pat1, thnks 4 replies. i have tried 2 get help. we dont have alsa here in el paso. no lending hands n u have 2 b dead broke to get help. well it wont b long before i either die or go broke so i take one day at a time. my family should take the time to read n learn about als in stead of saying i need medication.
 

mjk201

Member
Joined
May 10, 2008
Messages
29
Reason
Learn about ALS
Country
US
State
nj
City
bayonne
crystal n pat1, thnks 4 replies. i have tried 2 get help. we dont have alsa here in el paso. no lending hands n u have 2 b dead broke to get help. well it wont b long before i either die or go broke so i take one day at a time. my family should take the time to read n learn about als in stead of saying i need medication.

don't think like that if you have faith then maybe you will get the help you need. it really makes me mad when people want more money for helping someone out. i mean come on already. if this world didn't revolve around money maybe it wouldn't be so bad. i don't have als as far as i know but i read everyone's post and read all the good and the bad that comes with this condition. i watched my grandma waste away from cancer which was her 3rd time getting it. and since i seen the way doctors and people treat people with these kinds of problems and it's horrible.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
cutika,

Unfortantely, alot of people don't understand what ALS is and think if you take meds it will control it.
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Correct on your analysis of the Dr. Visits.

So sorry you are going through these symptoms of this disease. But visiting over two years to an ALS clinic we felt the same way you are expressing. No one seems to know how to help us, and we are giving the medical staff information instead of them giving us information or any help in preventing this dreadful disease ALS. It does seem like a waste of our valuable time to have made each appointment with no news or cure.

The only advantage we experienced was the Doctors prescribing needed equipment as this disease progressed.

We are still praying for a cure for ALS, and our advice to all is never give up, keep fighting for a cure.

Hang in there and live life as best as you can. You have every right to feel as you do.

Hugs,
Caroliney
 
Status
Not open for further replies.
Top