And So It Is...

[Lkaibel]

My dad took Ritulek for awhile. It seemed like he had slow progression while he was on it. But, the Dr's claimed it wasn't helping him and pulled him off of it. I tend to disagree. I think it was helping him.

We think it's worth a try! It's covered now by his Rx medical plan do why not?

 

[Lkaibel]

My dad lasted 3 1/2 years with ALS. Passing away shortly after his 81st birthday. We think now when we look back though that he was experiencing symptoms for 2 years before diagnosis. My dad had limb onset.

We think Brian has some symptoms one year prior but I have hesitated to mention it particularly now because I did not want to push the health anxiety crowd over the edge. In retrospect though, the idea that this man with the grace of a dancer who could walk across glare ice in our nasty Winters without thought had mysteriously "tripped" multiple times on dry solid ground was telling, just for starters.

I am sorry about your dad.

 

[affected]

Lenore I have my own very firm views on what I would be prepared to live with. They are my views for myself, not others

I'm just kind of saying that this disease does not follow particular predictable paths, and falls can happen suddenly when walking seems not too bad. I know, my husband had many falls, and two of them caused serious injuries that impacted on his quality of life. Every time he fell he was not doing anything radical, he would just be upright one moment and hitting the ground hard the next. I will say he refused to use walking aids as much as possible and every fall happened without any aid. OK I just remembered one fall happened when he got really angry he couldn't blow his nose and threw the tissue at the bin and missed, so he decided to kick the bin ... lifting one leg was not smart at all, and fortunately even though he hit the stove with his head on the way down that particular fall did not cause injuries, just more fury

I also believe in acceptance and in letting PALS make their own decisions then standing by them and advocating for them.

It could be very worthwhile checking out thoroughly the palliative care services you have in your area now. Find out what the differences are between them and who you would maybe work with. A good palliative team will support his wishes and give you both enormous support. You don't have to start with them now, but things can change suddenly with ALS, and there is nothing worse than trying to make decisions in crisis.

Have you done all the legal documents? Living will, power of attorney both financial and medical? Get them done now, again, don't get caught in crisis.

If you can make some of those decisions and put things in place, you are both more likely to then start to just live what you have now, knowing you are prepared (as much as you can be).

 

[Lkaibel]

We are meeting with an attorney the first week of August for documents all around, wills included. Yup, agreed on being prepared Tillie.

 

[Lkaibel]

Today my brain is floating back and back to "No... Really?!" This has got to be a movie or something. It's geriatric "Love Story"! No, it is true. It is me. It IS him. Really....

 

[vltsra]

Lenore, My husband was diagnosed in October while I was out of the country. I came back to the news. We had 2 second opinions before I could get my head around this (or at least partially - I'm still not sure it's all really happening). I spent the first 6 months in a fog, very depressed, could hardly work. Most of my friends said I am so strong and would be fine...and then disappeared. I totally understand how you feel. I don't know what I'd do without this forum, no one else really gets it. I'm still not ready to go to the face-to-face support group, but I'm close.

V

 

[Nuts]

Lenore, we are at 2 1/2 years. Most people think I'm very well adjusted and handling this exceptionally well--but those thoughts hit me like a wave sometimes. I don't think it will ever stop. I've accepted that this is our new life--it's only when I remember what life was that I'm tossed back into that state of shock and despair. It's like a giant chasm spreading out in front of me that I must back away from very quickly because I don't want to feel that pain.

Keep sharing--it helps!

Becky

 

[Lkaibel]

Thanks so much V and Becky.

Last night was really nice - we went out for drinks and sat on a restaurant patio and it was so nice out. Yet as you say, it is always there. We did talk about how we have conceivably lost 20 years, due to his formerly great health and me being only 51. We lost what our life was without a doubt. I am not sure I can ever really accept that, but I can live with it, roll with it because we have no choice.

Face to face support groups I am not sure we will ever be involved in. I am fine here with the forum and my friend who is also a CALS and my husband has no interest in seeing people in far more advanced states than he is, and he has made it pretty clear he has no intention of hanging around in an advanced state. Time will tell on all of that of course, and I know if I think too far ahead I will lose it.

 

[Lkaibel]

Just realized its our first dog together, Tori's birthday. She is a 12 year old Pom mix. We got her as a rescue from a woman who started having kids so she did not want her anymore, that's what the rescue told us.

We got her in July of 2010 just a few months after our April wedding. She is a very healthy girl and we love her. What rips my heart out today is she may well outlive my husband.

Who would have thought it? I will feel better soon but wow.

 

[Lkaibel]

Pushing on a month since the diagnosis. Good news: no progression this month. Tolerating Rilutek well. Coping very well with this, he is amazing. My hope is what we all hope, to make the very best of every moment left to us. I am grateful for the support here. Odd songs that haunt my brain:

1. Garth Brooks The Dance

2. The Rolling Stones Wild Horses

3. Lately a more recent tune "Hallaluja"

I do love him so much and will love him forever. No disease will take that away.