very fast progression

[Al]

Hi bigstu. Welcome but sorry about your dad. I'd say the best thing you could do is spend as much time as you can with him and try to act as you always did with him. Try to make as many good memories as you can.

AL.

 

[bigstu]

Hi bigstu. Welcome but sorry about your dad. I'd say the best thing you could do is spend as much time as you can with him and try to act as you always did with him. Try to make as many good memories as you can.

AL.

Thanks for the advice. I'm going to see him on Sunday and as much as I want to see him I am almost dreading seeing how much worse he has become and I feel guilty for feeling this way

 

[Danijela]

Hi there,

I am also based in the UK, partner diagnosed with MND a few weeks back. Have you been in touch with MND Association or your/your dad's local MND branch? You can private message me if you want to chat about UK specific stuff.
I understand your fear of seeing him. I too fear every little change in my partner who fortunately does not seem to be progressing very fast (arm onset, so far limited to hand/lower arm).

 

[Danijela]

Sorry, you probably can't private message me yet, but if you leave an email address I will send you a message. Danijela

 

[Al]

bigstu if you'd like, PM me your email (you can PM me or CindyM only for a while) and I can send it to her so you don't have to put your email out there for everyone to see.

AL.

 

[grp_believes_in_God]

hello jess, my father starte his symptoms and he too went from looking perfectly normal to being bed ridden in about a year. Like you, I too was very worried we might not have him for too long. THen about 1.5 years into his illness it got to a point where he needed a vent to keep breathing. then things stabilized. He literally stayed constant for a few months. Then again some decline. It got to a point where only eye movement was possible. But he seemed not in any agonizing pain (at least on the face of it). A few months later he is a total vegetable. No eye movement, no response, nothing. Vent is just barely keeping him alive. I know every minute he lives is torture for him. His helpless face just kills me. SOmetimes I feel guilty about prolonging his misery by puttin him on a vent.
To summarize for you, its not the quantity but the quality of life left that matters

 

[Jennifer51]

bigstu

Like danijela said ...contact the mnd assoc.org
They are fantastic and will help both your father and carers, they send someone to see you ...if you want them to ...and are very supportive with equipment loan if they have it, or can cut the red tape and get things to happen quickly for you and help arrange to see any of the special help people you need...I have a loan riser chair from them (brand new and mad to measure for me) and a litewriter, and they would have loaned us a chair lift, if we had straight stairs...which we dont..so we have had to pay for one....They will advise on the disability living allowance, which then gets you the blue badge....they are supportive in more ways than I have experienced yet....we are trying not to give in too soon to this horrible disease. They are happy to send someone to just talk to you if that is all you want...do give then a ring or go online.
I live in Woodford Green Essex and was diagnosed Mar/April this year with bulbar.

 

[BethU]

Hi, Grp Believes in God,

I am so very sorry about your father. When you say: Vent is just barely keeping him alive. I know every minute he lives is torture for him. His helpless face just kills me. SOmetimes I feel guilty about prolonging his misery by puttin him on a vent. . . . I wonder why you are so sure he is miserable.

I don't think you can know that every minute is torture for him, or that he is in misery. I can't prove it by any means, but my feeling is that your father may well be in a deeply peaceful state, and he will be released when it is time.

Blessings.

 

[I Wish]

Spirit and Dignity

I want to start by saying I respect what you are saying about your dad. I lost my mom 9 years ago August 2 1999 from ALS. And yes it happened pretty fast. Mom was diagnosed April 26 1995 and by Jan she was walking with a walker and had a very hard time dressing herself. By June she had a feeding tube and was wheelchair bound, by November she elected to go to a nursing home with 24 hour care. She was unable to move any part of her body and almost could not talk. She smiled though! Everyday she smiled and had a sparkle of life in her eyes. She had a wonderful personality and the little mishaps that happened she smiled or laughed. One time i was putting her cowboy boots on (with a leg that has no control) and i ended up tipping her wheel chair backwards and she rolled out of it on the floor. (laugh laugh ) All she could do was laugh and then she decided to stay there on the floor for hours. So take pride in your dad and yes remember. The best part of mom being sick is I was able to see her strength and her inner joy. I was able to learn from her that even though she was dieing she was and is my mom and will always be with me forever. So even though she is not here physically she is here mentally and I cherish every moment of memory i have.

So, as hard as the next few months will be and trust me they will be the hardest emotional roller coaster you will ever be on know one thing for sure your dad loves you for you and he will be with you for ever no matter where or what he says in the meantime.

All of my warmest wishes to you and the family. Take care of you and love your dad.

 

[brendapals]

Bless you for sharing that wonderful memory of your mother with us!
Sounds like she was a treat-I can only hope that's how my boys see me, and I think they do.
Have a blessed holiday season,
brenda

 

[MtPockets]

Oh so many sad and painful stories here on the forum. Some of us are in the middle of them ourselves.
A bit of good news yesterday from my speech therapist, she said I was progressing slowly considering the amount of swallowing function lost and one half of my esophagus being paralyzed. That is good news.
I just wanted to give you a view from inside the body of one trapped with the ongoing movement of the ALS killing off my nerves and spreading up my torso. Everything below the waist is gone. No purposeful muscle use or movement is left. Now I know what is in store for my arms, hands, neck, etc. I have lost about 75% of the strength in my arms.
What goes through my mind as I consider this? What about when I am locked into this body and can no longer move?
If you go read my User CP, profile Blog, you will see why I have a positive outlook. I have placed my whole life into the care and control of God. When I advance to the point that I am locked in, I can spend more time in prayer for others such as the ones on the forum who are in fear. I understand how that must be, and pray that somehow you find peace in your heart and spirit, not only for your loved ones, but for yourself.
I truly from my heart, ask God to Bless you with peace, for it is only through Him that we can find it while dealing with this horrible disease.
Dx May 11, 2006

 

[brendapals]

Capt Al,
May God bless you also in this wonderful season!
Love the picture,
brenda

 

[CindyM]

Hey Al- do they recruit you to play "Santa" since you have that cool white beard? Looking pretty sharp, as usual, BTW! Cindy

 

[BethU]

Capt Al ... you are the heart and soul of this forum, and I know you have inspired others as much as you have inspired me. I keep you in my prayers ... thank you for sharing.

 

[MtPockets]

I haven't been asked to play Santa yet? I decided to let it grow for Christmas and then shave it off for New Years. So everyone can remember how ugly I really am, and why I chose to cover it up with a beard. Probably scare some of the little ones, grandchildren, if I shave before then. :lol::lol:
Here is another close up, maybe you can print it off and put in the closet to scare off the bugs. :lol:

I'm sorry. I did not mean to hi-jack the thread. Please continue on.