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themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Another 7 pounds gone in a week and a half. It's disappointing. No matter what we do - can't keep the weight on. He won't drink ensure. Wants everything to be ok - and the same as it always was....It is so hard to accept I guess. Of course - its hard for me too. The doctor told me that once the disease paces itself - it rarely - ever plateaus. CALS if this is true - my journey is short. This beast is like a raging dragon - destroying everything in its path...In the last two months we have gone from a numb arm and an occasional slurred word to full blown - knock your socks off - ALS /FTD/BP. We are getting a ventilator this week. They are assessing the rest of his needs too.

It doesn't seem like the limb onset is moving as quickly as the rest. I say that but then wonder if its really true. Its now in both legs and the other arm. Is this how it goes? In two months it has traveled to the rest of his limbs. Do people go for months or years without another symptom?


I was hoping for a miracle or two....If ya got 'em in your pocket - I sure could use one along about now...
 
so very sorry it is progressing so fast. this beast is relentless..
 
I'm so sorry, I wish I had some miracles to send your way. But I'll send some prayers instead.
I'm assuming he's still able to stand on his own since you're able to get his weight ? We haven't gotten an accurate weight measurement in at least a year and to be honest I'm scared to find out the truth.
PALS started the other way - arm, legs, other arm and then speech/breathing. He went almost 3 years with the limb issues and only in the last year has the speech really been effected.
My prayers to you and your husband.
 
Rog's started with speech and swallowing...and breathing. He is still walking and using his arms. His left shoulder is very sore, he says he damaged his shoulder, but won't see the doc for it. I'm afraid the arm is wasting away and he doesn't have a lot of strength left, he walks slowly and has lost 75 pounds since his diagnosis (I'd cheerfully give him 75 of mine). My thoughts and prayers are with you!
 
Michael is still walking and using one arm. The neuro checked the left leg and was there was no resistance left when she checked it. Mic is only 170 pounds to begin with...So its hard when you lose it at such a rapid rate. Cried a little afterwards - he was so depressed he wouldn't get up and brush his teeth...I literally made him get up and get going....I felt bad afterwards...Of course he is wallowing in how hard it is. Of course. Today was a better day...Its just so hard to see him cry...
And the 14 pounds - uhhh - he lost them - I found them....Its a tough journey.
To compound the problem - his family has walked away from him. His sister and his mother have turned their back on him - because they don't believe the diagnosis....I can't understand this. And will never never never be able understand how people can be so utterly cruel. I actually sent them the diagnosis from the neuro - they still won't believe it...Can you imagine? They see his declining health and somehow they rationalize it. Its just not something they can fathom....Not something they can allow themselves to believe...This more than anything hurts him deeply....As if ALS is not traumatic enough...
 
Sure wish there was something I could do for you. It's so hard to understand people, isn't it? I only have so much energy and try not to waste any of it worrying about things I have no control over. Pretty tough when we have so little control of anything these days, I know. It sounds like you're doing everything you can. He's lucky to have you. I so wish I had a miracle to send your way. Hang in there {{{HUGS}}}
 
I'm so sorry that you're having to go through this. It's especially difficult when family and friends can't deal with the diagnosis and are not there for support. Our prayers will be with both of you.
 
I wish I could send a miracle to you & your husband. Shame on his family...how could they not believe he has ALS. I'm so sorry his Mom & sister are hurting him so much. What do they think is happening? He is lucky to have you helping him. Hang in there, my thoughts & prayers are with you.
Leslie
 
Thank you all. My children have asked me - "Mommy if we were sick - like daddy - would you leave us? Would you walk away from us?"
OF COURSE not! But they don't understand. Because there is no understanding. There is nothing that justifies this.....

I try to be positive every day - but this journey is so hard. So devastating.... The emotional affect of losing Michael and then having a bunch of nincompoops for in-laws is sometimes more than I can bear. You know I try to show my children that even in the face of extreme adversity we must carry on...Head up - shoulders tall - and marching forward. I got a book for each of the kids - called "There's no such place as far away" - Richard Bach (Jonathan Livingston seagull) It reads like a children's book - but it really is profound....Forever changing our perception of the term "lifetime"...((Hugs to you all)) I hope your days are filled with joy....
 
Your poor husband, I am so sorry you guys are facing all this alone. I hope you have started moving forward with ordering a PWC for him and a bipap. So sad that it is moving so quickly and his family are being such jerks. Be prepared--they may never come back or they may come back at the end and want to "take charge" both are very bad situations that will cause you extra grief. My MIL told my husband to have a good life in an email and has never called or come to see him in 5 years. I am quite sure she will show up for the funeral because she likes to put on a show. me and the kids already have discussed how we will have her very publicly removed if she does show up. It made us all feel better to imagine humiliating her and being mean to her! :) I hope your neuro gave your husband some anti depressents if not, call them and tell them he needs them he is depressed. (get some for your self too!)

stay strong mommy!
 
Barbie - I thought of you all - and how your life is so similar to ours. It is so very sad to have people act this way. I came from the country - and they just didn't ever behave this way up there...Our families all knew everyone else's family and when people were in trouble - shoot! We all came - every day. We Cooked supper and brought it over - called up and asked if you needed anything from the pharmacy or the grocery store. That's just the way we were raised. So to run into people who are like this is just mind - blowing.

Especially with a woman with 4 kids - I can't imagine. The neuro did prescribe some anti-depressants AND we are working on a bipap. I don't know how to start arranging for a PWC. Any advice?

And as for me being depressed? I am just plain MAD. I understand wanting to be mean to your MIL. I don't even want mine to know there is a funeral. Other than being able to publicly humiliate her - that might be a nice touch! :)
 
Well Amy-- I won't be calling her when he passes, but I am sure My husband's sisters will tell her..though hopefully they will pass on that she is not welcome.

I am surprised that when you went to clinic they didn't mention the PWC. perhaps they did not think he was far enough along. It can take 3 months to get one, that is why I mentioned it. When my husband started falling alot, we bought a scooter on line (just a few hundred dollars) and he used that for about a year. It gave him alot of freedom and safety and kept him from getting over tired. Once his arms started to get way too weak to steer we got the chair. How often do you go to the clinic? I am not a good judge of time frame becasue we have been fighting this battle for 5 years and my husband is slow progressing so we only go to clinic once a year or if needed.

Hopefully you have some of your family or some friends you can depend on to help you out. Some folks here have a great support system of family and firends but many do not.
 
Barbie - It is tough I know with MIL. I try to forget she ever existed. Did you ever see the sitcom - Everybody Loves Raymond? That is my life on the TV. And yes - my MIL is exactly like the MIL on that show. :)

We are going to the clinic in Tampa - we tried to get into the one in St. Pete but they have been bought out by BayCare and are no longer accepting our insurance. Our Dr. also advised against going to the St. Pete clinic now. So off to Tampa once a month - (1st Saturday of the month) - this month happens to be June 1. Dr. Katzin set up appointments with Millennium Home Health care - to have the respiratory therapist come out to the house for an eval. If we can't go to clinic for some reason - they come out. They are out of Ft. Meyers.

Michael's ALS is moving quickly. Although I must admit we are not seeing alot of decline in the limbs - so that is good. But the breathing and the choking - well that's another story....:-( The therapist said the right side of his lungs have diminished capacity (whatever that means in clinical terms) and they are recommending a cough assist and Bipap to help rest the diaphragm which seems to be affected already. He has tried to quit talking alot - he says it wears him out. I think he is trying to preserve what is left of his voice.

Well...off to fight the good fight today....Have a wonderful day filled with Joy!
Amy
 
I am so sorry this is all happening to you. Families! - some members of ours are brilliant, others, well, I wouldnt know because we havent seen them. I always just feel that it is their loss and they will have to live with the sadness and guilt one day. Like with Barbie, me and my step daughter have discussed those who will turn up at the end to "be there for us" - go away - where were you!

It used to bother me and make me angry - now I just don't care, I've let it go and feel better for it.
 
I know rachel - but its hard to let it go. I try really hard. We are very positive people - but oh my - the sense of betrayal is monumental.
So each day - I say my little prayer. Somehow I get up - and move on with my day. Try hard not to think about how I really feel about their stupidity and put my head down and do what every mother does.

MOVE MOUNTAINS...Part the sea....and laugh when you can....about ridiculous things that have no bearing on anything - but are given as gifts to us - to make us understand what's important. I can tell you - I laugh harder now - than I ever have...simply because - somehow it is sweeter when it comes....:)
 
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