Question About End Stages Of ALS

[terri]

The BM's can really be a problem. What worked for LB was Miralax and Magic Bullet suppositories. The last few months of his life he could not have a BM without these. We did the Miralax everyday and the Magic Bullet every other. Magic Bullets do not have the heavy wax that most have, therefore, they work in less than a minute usually. I don't know what we would have done without them. The Miralax you have to work with to find out just how much he needs to make movements not be too soft causing accidents. For LB once in the morning with juice was just right. Sometimes nearer the end we sometimes had to add a Fleets enema to this.

It's hard to know how much time is left but I think the caregiver as well as the pal will know. We both knew that we were in the final hours yet I sure didn't want to admit it.

Take care and find joy in the Christmas Season.

terri

 

[CindyM]

I missed some parts of Garry's last year worrying about it something I will never get back

This is not the ranting of a "crazy, sad woman," Cathy Amanda. It is something we all need to be reminded of.

 

[paula-jane]

CathyAmanda,

Only 32... that must have been so very difficult. Not that any other age would make it easier. I don't think I would have had the tools needed to cope with this at the age of 32. You are not crazy... but, grief and other things that are completely out of our control do make us feel that way. If it is of any consolation to you... I feel as if I am "losing it" on a daily basis. Your post is compassionate because it is honest.

 

[CathyAmanda]

Hi Paula-Jane

Thankyou It was difficult....Of course you would feel as if you are losing it....I cant imagine how it must feel to be suffering through this disease with your mum. It was hard enough to watch a friend go through it and god only knows how I will be watching his sister Julee go through it now.....We will be fine (we have to be) It is hard to know what to say on this forum as being only a friend of PALS I know that what I feel is so different to what a lot of other people on here are feeling...I joined because with Garry I lived in denial about what was going on and when I finally did accept that this disease was going to take him it was almost too late say all that I needed to......I am not making that mistake with Julee...........However knowing what we are going to be going through makes it harder............Julee is fantastic though (very positive very open and informative about what is going on at appt's etc.......It amazes me how PALS can do so much to make us feel better............

Take Care

Remember when you are "losing it" Somehow, Someone, Something will give you the strength that you need. Take one day at a time.....sometimes one minute at a time.

Thanks Again

Oh and Merry Christmas

Cathy

 

[DouginDet]

Dear Shell Shell,

Don't worry about the end trust me Ive been living with Balubar Palsy for about 6-7 years now. Its the same as ALS but , more progessive I don't give it much thought. I use to run 8 miles a day 6 days a week 15 years, well can't do that anymore. LOL. The doctor attributes that to my lasting so (LONG). I don't it's my mind set. What I cant tell you is be with your MOM especially when its hard to breathe. I have a hard time myself with that but, Thank GOD for XANAX! I've been in the end stage for over a year now. I still use my arms, hands legs. although getting very weak but, I keep on keeping on. I've lost alot of weight from the eating like most and my voice is messed up I sound like an old man and I don't even have a grey hair LOL.
I don't know if you have faith that has helped me more then the doctors, My thoughts are like all over the place that goes with what I have. What I can tell you about your MOM is that stay with her laugh, joke, enjoy life. Don't thrive on sickness please or the end we all will have our end. ENJOY what we have now don't worry how its going to go at the end everyone is different and notta one will go the same. I wish I could give you my phone number or to anyone else that needs to talk. I will give my email out I hope I don't get in trouble with this site for it. [email protected] Feel free anyone to contact me. We are all Brothers and Sisters in OUR FIGHT. No matter how much pain I get in or trouble I have breathing I still find time to joke and laugh. I wish everyone would take some time and forget about being sick even for a little while and Laugh. I was only supposed to make it 3 years tops my doctors said. here I am almost 8 years later. Take Care everyone I mean it from my heart.:-D