Lurker

[archie]

Since my "diagnosis of no ALS at this time" I have been lurking here and I must say I do not completely understand how you with ALS have such optimistic outlooks. I'm concerned because my back surgery may have failed. I'll know more after my neurosurgeon reads the MRI I had done yesterday. Whatever the issue(s) are they may be correctable. But as I read your posts on your accomplishments and attitudes I am in awe. The posts regarding the passing of loved ones are particularly sad. I don't see where the strength comes from. Anyway, I drop in from time to time, maybe to prepare myself for the suffering and dying that lies ahead. Unless I have a quick heart attack, then the suffering part is pretty much eliminated. Otherwise it's cancer. I dunno. Reading these posts gives one a perspective you don't come across in the human interest stories presented on TV or in the local newspaper.

 

[LizT]

Well thats because the people doing the "human interest" stories don't know jack about this disease and they only find out what they need for that particular story and move on. Its disheartening.
I have to agree with you that the energy from folks on here is just amazing. Thats what brings me back here everyday. It doesnt make sense to make your life more miserable than it has to be. I think thats why so many of the PALS and CALS are optimistic. We dont give up, because if we do, ALS wins.
Im sorry to hear that you are going through all of this archie. No matter what you find out, try to look at life the way most do on here, and remember, we are all here for you if you need us.

 

[abbas child]

Archie, I hope your MRI shows success from your surgery. I have your kind of conversation with my Dad very often... concerning ways of going. He and I'd both like it to be fast. Both fast for ourselves and fast for each other. But of course, it is what it is. I trust the Lord with it, Archie. Selfishly, I hate it when others in the community die, but wouldn't have a problem if it were tonight for myself. Do you think our culture sort of refuses to acknowledge suffering due to fear? That's my take, personally. I believe there are a lot of people suffering, from many causes, but we're used to politely saying we're "fine" if asked.

 

[MRS.HOUSE]

You are a very sweet and honest person. My husband is in the same situation. The one thing I've taken away from all this is life is so precious. My husband and I continue to live our lives to the fullest.
I hope the best for you!

 

[TedH5]

archie, I truly hoe your MRI shows that your surgery was successful. I am also glad you were comfortable enough to express yourself on here. One more example of how this is a safe haven for everyone. Just remember you can not control what happens to you in life but you can control how you react to what happens and maintaining a positive attitude. Honestly I do not feel bad for myself I feel bad for my wife and 3 kids. I would not want to be my wife. I try and stay strong and keep a positive attitude for my family. I figure I owe that to them and would rather have them remember me that way years from now rather then being miserable. Feel free to come here and vent anytime we are all good listeners!

 

[archie]

I thank you for the wishes that my recent MRI will show successful back surgery. As strange as it may sound I'm hoping it shows the opposite. Otherwise I won't be able to explain the pain in my back and legs and my wobbly walk. I just was walking around the house picking up things, got pain, sat down and noticed fasciculations up and down both legs are going to beat the band. They were quiet 10 minutes ago. To me that means vertebrae compression is the cause. I'm just hoping the problem can be resolved without more surgery.

 

[John1]

Archie I know just what you mean. In my pre-diagnosis days, the possibility of my symptoms stemming from a neck injury was raised and an MRI was done to check that out. The doctor told me "Good news! The MRI is clean". I told him that in fact it was bad news because the alternative was ALS.

 

[TedH5]

Yes John every conversation was I have Good news and I have bad news...you are correct it was always bad news, bad news!

 

[Phil M]

I think everyone goes through life wondering what its like, and how they would handle it. Well, you can pretty much throw those thoughts out the window. Some of your so called friends will disappear into thin air. You will realize just how great your loved ones are. As for me, my life is getting cut short, and I consider my time special right now. I'll be darn if I am going to spend that time feeling sorry for myself. Its important to me to laugh, and be happy as much as I possibly can. I still have my moments, but I kick myself, and try to snap out of it as quick as possible.

 

[abbas child]

Did you all hope to have a brain tumor at some point? We did! My nephew died of brain cancer, and I still hoped that would be my diagnosis. Since that time, I've read others who said the same thing.

PhilM, me too. I tell myself that "these ARE the good old days" right now... and I believe it.

 

[trfogey]

Did you all hope to have a brain tumor at some point? We did! My nephew died of brain cancer, and I still hoped that would be my diagnosis. Since that time, I've read others who said the same thing.

Tumors, cancers, oddball metabolic and digestive/nutritional disorders -- you name it. My wife often jokes that nobody would believe that she actually loves me if they had heard some of the things that she had prayed for me to have instead of ALS.

 

[abbas child]

Oh, yes, the nutritional disorder was one I clung to for quite a while. Also the need for organic everything to the point of making a truly organic garden. The last horizon led to calling it quits coloring my gray hair, figuring it was crazy to make everything else under the sun "clean" while using harsh chemicals on my head. The house is still cleaned with vinegar/water. I figured we could still try to keep Phil from toxic chemicals.

Archie, now that I understand your problem, I hope the MRI shows the need for further surgery, LOL. A surgery which puts this problem to rest.

 

[archie]

Why do doctors always say "at this time" as in "well, you don't have cancer at this time, maybe next time. " Whadaya mean next time? Do we have so many "times" to avoid some awful disease before our luck runs out? Is there a medical open door policy on diseases? Too bad we never get to choose what we get when we get it. What are they teaching in medical schools nowadays? Like the stock market, timing is everything.

 

[Alyoop]

I think that it ia a Doctors insurance policy, especially when Untreatable disorders may be on the cards. MND's can take a while to "develope". Its starts with the Person just knowing something is not quite right, but having nothing much to show to the doctor. Thats when they often say that type of comment.

I burst into tears when my first MRI was OK. The EMG had pointed to a back problem.
In April I had another one to rule out MS. I lay in the scanner thinking"please MS. please MS". Burst into tears again when I got to the car (poor husband)!

A search for answers as your independence is affected is more difficult than knowing the reason for some people.

I understand where you are coming from. I had a cervical fusion and bone grafts for my arm fatigue. It stopped the pain from the bulging disc, but suprise suprise the arm weakness is still there.

God is the only answer. Instead of saying "why me", I try to say "why not"

 

[Miss]

Ironically, last fall when a friend of ours was gearing up for the ALS walk, my husband and I discussed that very issue - Why Tom, why not us. We were so thankful, and felt very guilty for actually talking about it. Strange how life can turn on a dime.