Recent content by alligator

losing the ability to drive for anyone is difficult. it is a symbol of independence, mobility and leadership--especially if you have children. If you are a parent of anyone under the age of sixteen and can't drive, you lose a bit of your parental identity. we all complain about being soccer...

Do it. Go on the cruise

the word "stages" is not really applicable with ALS. I appreciate Atsugi's comments about the way his wife choose to go. Prolonging life and prolonging existence are two very different concepts. All of us on the forum who are going through this nightmare can attest that the disease has a...

Hello, When my wife was first diagnosed, my two boys were the exact same age as you two kids. Right now, I can understand your complete confusion. My wife and I were in shock and we both wondered how we were going to deal with raising two young kids and manage this dreadful disease. Although...

As hard as it might be to do, I would advise that you either "let go" or suspend the relationships that are not value adding. If they are turning away, then too much energy can be spent on having them try to "come back." I wouldn't assume that these were not "real friends" they just don't...

it is true. A picture is worth a thousand words.

ALS does not attack the heart, lungs or digestive problems. I know it can be confusing because you read that most ALS patients die of respiratory problems so you might assume it is lung failure. In actuality, it is diaphragm failure. If there are issues related to lungs and ALS, it is likely due...

Stephen Hawking is an outlier---not typical of ALS natural progression. Often times people will point to his example and use it a reference for self-comfort and an excuse not to be present. After all, the PALS could live as long as S.H. is the self-talk that goes on in many minds who don't know...

yeah, hoyer and bipap. two ALS related objects no one has ever heard of

hello. After a few more months, you will experience ALS saturation--meaning you will know all there is to know about the disease. In fact, you might be more knowledgeable than some Hospice nurses who have not had much experience with ALS patients. From my perspective, the key to helping your...

I had BC/BS but it doesn't matter. every region and employer has their own negotiated price. The drug itself was almost $1000 dollars but I did get it for $30 with a physician override. Honestly, the drug might get you three months more. The side effects sucked. There is a reason it is not very...

I completely agree. Most people have never even heard the word "hoyer".

Welcome. I totally did not do an introduction.

I would have to completely agree with everything said. Level of "meanness" is positively correlated with increase loss of control. The real questions is how, as a caregiver, to cope with it. There are no easy answers and everyone is very different but I can tell you this much, if you react to a...

Hello. What was interesting to me, was the people who I thought were going to be there for me were not but new people whom I did not know before ALS struck my family did somehow find their way to me. My wife's family never sent a text of encouragement or even bothered to call me personally...