worried about a friend

[worriedfriend]

I have a friend who may or may not have ALS, he was told about 9 months ago.What bothers me is his brother doesn't beleive any thing he says.He calls him a drama queen a hypochondriac, which I know isn't true, I've known him for 16 yrs and he's the last to run to the doctor. He has to see doctors in a well known hospital in a couple of weeks to confirm his dagnosis. He's been to 2 doctors that say he has als,and another 2 that question some of his symptoms.If it is ALS his progession is very fast, it seem to change every day, the problem is his brother pushes him to do things that he has trouble doing, most of his problem is in his upper body (trunk & arms) each day he gets worse, and from what I know about als is once you loose it you don't get it back. He's always telling him how lazy he is,and that he his milking his condition, and makeing threats about not takeing him to his doctor appointments,which he has in the past, you would think he would want to help him find out what is really wrong. My friend is at home all day buy his self, he just started having trouble getting up and down stair due to his arms and chest, he goes with out eating and drinking at times untill his brother gets home, then the brother get mad if he ask's him for some thing to eat or drink. Another problem is the brother thinks he knows more than the doctors, to him their all idiots or to young to know anything. I'm sorry if i'm ramblining on but I'm worried about him. If it ALS for sure I don't know what he will do and i'm at a loss to help him.

 

[Chase_Corin]

Dear Worried,

Some people have a hard time accepting the limits of a person first coming down with the disease. It may seem to somone who is not informed that that person is lazy, tired or disinterested but it if far from the truth.
I think your freind's brother might accept it if he is diagnosed and the brother recives proper information. The progress of ALS can be very quick. My father went from being able to talk without sluring and able to drive his own truck 6 months ago to having a hard time speaking and not being able to drive at all.
I think it is important for your friend to contact a local association that may provide helpers that could stay with him durring the day and possibly fix his meals. Or as an alternative he may want to look into getting somthing like the "LifeAlert" system installed in the house. If he does fall he might not be able to get back up and being alone in the house means he could be laying there for hours.
I do not know how you might be able to get your friends brother off his "i know better than you do" attitude but I think he needs to become more informed. This disease can be devistating in a very short period of time and knowing what is going on is a lifesaver. Perhaps your friend could ask his doctor for information about ALS and leave it around for his brother to read. It may get to the stage where your frined needs to sit down and say "look, this is serious and I need you to understand this." Being direct is somtimes the only way people will listen.
I hope your friend gets a definative diagnosis soon so you and he will know how to proceed.
Chase~*

 

[abbas child]

Worried Friend, is there anyone who can help bring him food from the fridge to his bed? Can a third party come into the house/obtain a key to help at all until the trip to the hospital hopefully brings about a diagnosis? If this isn't ALS it may still be very harmful for him to be doing these things and suffering from the overuse of his upper body.

Ann.... who is also concerned.

 

[GRM2008]

Your friend's brother needs a wake-up call and it might be you who has to do it! Is this the guy who your friend is depending on for food and drink? what about when the poor guy can't move at all if this is ALS and it progresses?.......this is very, very serious and i urge you to contact his doctor, a local primary care one, and tell him what is going on with your friend...he needs help, this poor man cannot be left alone with his brother, he's obviously not going to get the care he needs and deserves....other people need to be there, or perhaps he will be better off in a facility of some kind? where at least people can tend to his needs? This is so upsetting!

 

[Katie C]

Another option is to call adult protective services in your county. This can be done anonymously... your friend is entitled to a certain minimum standard of care, including proper nutrition and a safe living environment. Getting a social worker or the local sheriff's department involved my be the wake up the brother needs!

 

[LizT]

I agree. you shouldnt let this slide and see what happens. i know it is sometimes difficult to get into other peoples business, but we are talking about the well being and safety of your friend. And it very well could be/become a life or death situation. If his brother isnt up for doing what needs to be done, then your friend needs to be given the option of finding someone who will help him. maybe this is you- maybe not. but as his friend, it wouldnt be a bad idea for you to try to help out if he is having troubles.

 

[abbas child]

I'm feeling split in two. What if there is no more help given after a call is made, and the situation leaves this ill friend without any home or transportation. I'd really like there to be outside help given during the day, and whenever needed so that the brother is taken care of. I respect Katie's opinion very much as well as yours, Liz. I'm simply wondering about the outcome.

 

[worriedfriend]

His brother is well aware of what ALS can do because he was at his brothers doctor visits, I think part of the problem is the doubt that was brought up about the ALS diagnosis and being told it was progressing slow, which I guess makes the brother think it's all an act, also some of the symptoms he has don't seem to match the diagnosis. He told me he would like to get a fridge for his room, but money is tight for him right now. I would like to get involved but I don't live near him, plus my job keeps me out of the country. He wants answers more than anything and for his brother to beleive him.

 

[LizT]

youre right, Ann. sometimes its difficult to see what the outcome may be. my first instinct is to protect.
worriedfriend- maybe you could try to explain to the brother that sometimes symptoms are different for different people.
Example: Most drs will tell you that there is no pain associated with ALS, but many PALS (people with ALS) would beg to differ.
Also, drs will telll you that bowel and bladder control usually isnt lost- thought this is mostly true, again, lots of PALS will tell you differently.
Maybe suggest that the brother come on here and just read. I hope you and your friend find the answers you need.