just wondering

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floryb

New member
Joined
Feb 15, 2013
Messages
8
Reason
Loved one DX
Diagnosis
12/2012
Country
US
State
ohio
City
lima
hello everyone! Just a quick question. Do all ALS pts wind up on having feeding tubes and have vents. I posted before that my husband has been diagnosed recently and I'd like to know what the future hold for us. I read about this all the time so I'm assuming that eventually it will happen but still would like to hear from others if this is always the case. Thanks so much. Good luck to all!
 
Progression is varied. Often depends on where it starts and speed of progression. Some do not get tubes. Some, no vents ,some no loss of the ability to walk. Your Clinician is best suited to determine what your husband's needs are as they develop.
It's so important to maintain nutrition and hydration. It will affect energy levels. Weight loss is a killer. Our Clinic is concerned if we drop 5 #.
 
Thanks Deb for the info. Its really hard for me to ask questions to the doctor while he's with me he doesn't like me asking questions. But his actually started almost two years ago with the foot drop. He is totally incapacitated now. Loss of limbs loss of hands but he does not yet present any swallowing issues i mean once in a while if he's swallwing a pill you may notice a little difficulty but nothimg major. His speedh is fine too. But I will see wat i can find out. Thanks again. Take care
 
I echo what Deb said.

I will add my own viewpoint. Soon after my diagnosis, my wife and I discussed a possible peg if eating problems occurred early in my progression. I don't want a vent to extend my life at an advanced stage (that’s in my advanced medical directive), but I would use a bipap for comfort. These are just my preferences.

I'm sorry that you have to deal with this, but it's good you are thinking about these questions now.

Bob
 
Flory, get the doc's ( or nurse's) email and send your questions and concerns to them prior to the appointment. That way, the medical staff can bring it up during the visit. Sorry to say this approach becomes necessary with some PALS so that the doc is adequately apprised of the situation at home.

Standards of practice suggest that PEGS be placed before the FVC drops below 50.

Good luck.
 
Deb and Bob thanks again for commenting. Would either one of you care to comment on your situation at the present time. If you don't I totally understand. Like i said I'm new to this so sharing anything you can is very valuable to me. By the way my first name is Beth. Thank you
 
Beth hi,

Have you seen the YouTube video called ' ABC's of ALS ' ? It's a three part series. If you don't have time to see it all, you could skip to the third part. You may find it helpful. The presenter discusses the end game part of the disease and the various scenarios.
 
Elaine, thanks I will check it out tonight.
 
I watched the ABCs of ALS very informative. This should be a must see for anyone diagnosed or taking careof someone with a motor neuron disease. It offered some very good insight into the disease. Thanks for suggesting the video. I came across a quote the other day from Helen Keller I'd like to share with all of you. "Character cannot be developed in times of ease and quiet. Only thru experiences of trial and suffering can the soul be strengthened vision cleared, ambition inspired and success achieved." I read this quote quite a bit and when I'm feeling down it lifts me up and inspires me to keep moving forward. Hope you all have a wonderful day! Keep smiling, everyday is precious, take nothing for granted, life is too short. Take care thanks!
 
Great quote! You should add it to your signature line.
Glad you liked the ABCs!
 
Hi Beth,

My ALS started about 7 months ago with a limp. It progressed to one sided leg and then arm weakness. I have some weakness in the other leg and recently it started in the other arm.

I still use a walker inside the house but have gotten very slow. I use a wheelchair when outside the house. I now need help with everyday activities because only one arm works and I tire quickly.

My breathing tested normal about 4 weeks ago, and I chew and swallow ok, so no bipap or peg.

Bob



Deb and Bob thanks again for commenting. Would either one of you care to comment on your situation at the present time. If you don't I totally understand. Like i said I'm new to this so sharing anything you can is very valuable to me. By the way my first name is Beth. Thank you
 
Hello Bert. Just read your post: just wondering? My name is Andy and I'm from Ireland. I got this disease. 37 years. Diagnosed in 1977. Got the same prognosis as everyone else – 2 to 5 years life expectancy. My hands and arms are absolutely useless. But the disease did not spread to any other parts yet. I write with voice recognition. I know two other survivors in Ireland, one 23 years and one 33 years. I know plenty with the disease – 8, 9 and 10 years. Then, I've known of people dying within the year! But everyone is different. No doctor or neurologist can forecast when you are going to die! My neurologist looks at me when I attend our AGMs, as if to say – not you again :). I have just wrote my Memor's: "Against the Odds, Living with Motor Neuron Disease: By Andy McGovern. It can be purchased on Amazon, or Home - IMNDA post free. I wish you the best of luck. Think positive! Have a laugh and a joke and keep good humour. Acceptance is the key!
 
Andy,

Hello to you! I'm a newbie... Coming on to a year. Congratulations to you.

I just read a previous post of yours. I too am going to Lourdes on April 9.
Is it OK with you if I mention your name to Our Lady? (It surely can't hurt!)
Shall pray for the favours you have been afforded.

I'm certain that my visit to Fatima last October is the reason I'm still walking quite well.

Thank you for the inspiration.
 
Hello Ottawa. Oh yes, remember me at the grotto. I'll be visiting there in June. Please God. I will definitely return the favour. I've been going there for the past 23 years. 1990, when I received the gift of acceptance. Each year I walk almost 2 miles from the grotto to a hotel. Some days this would be twice. I keep praying: "let me stay in this precious condition for another year." The following year, I'm back, still walking. "If you could force your heart nerve and sinew to serve their turn long after they have gone and so hold on when there's nothing left in them except the will that says to them – Hold on! (Randolph Kipling). Good luck Elaine. You got the right attitude!
 
Don't ponder on what your husband will need in the future – tubes or no tubes! No one can forecast what direction ALS/MND will take. My suggestion to your husband is. Enjoy today and tomorrow, with new technology and equipment living with MND is a lot easier than it was 20 years ago. At least professionals and organisations understand the disease much better now. Thinking of what's going to happen only causes unnecessary stress. Appreciate the abilities that you have got today and don't ponder on the ones you lost! They will never be restored. Good luck – Andy ~
 
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