ALS progression in short amount of time?

[Raydavis]

Hello, My name is Ray and I was diagnosed a little over 2 years ago with ALS Bulbar onset. It has slowly progressed with my speech is gone and my strength in my shoulders going. I eat through a feeding tube and my muscles twitch 24 hours a day and has moved into my legs and into my back and lower abdomon. One year ago my wife was diagnosed with cancer of the panreas with the tumor being fairly small and workable. She has just had major surgery in Houston and is now recovering at her daughters home because the doctor knew she wouldn't get the care she needed here with me having ALS. I am under Hospice care not knowing the speed in which my condition will progress. I truely believe our conditions are under Our Lords care and I am content with my situation, but, my wife will be coming home soon and am not sure how fast my ALS "could" progress. Can anyone tell me how fast ALS Balbar can progress? I am fully aware we are all different, but I would like to have just a "smig" of an idea from someone who has witnessed the progression in six months or less. Thank you In Him Ray:grin:

 

[LornaDoone]

I have met a gentleman through a support group who has gone from slurring speech to requiring a feeding tube and bipap therapy all within 8 months time. His symptoms leveled off and over the last 2 years has just lost use of his legs and is in a wheelchair.

I also have a friend who has been diagnosed now for 6 years and started with slurring speech. He is just put on the waiting list for a PEG. Crazy disease.

 

[smwelder]

hi, i was diagnosed in oct of last year speech started to slur in aug. at present time im full time in power chair. have peg and no longer can dress myself. yes this sucks to have gone so fast

 

[t34gib]

I was diagnosed in January 2009 beginning with slurred speech and Dr. said I was slow progression. I have had a feeding tube for the last year and can no longer speak. I have weakness in my left hand and my breathing is labored and I tire very easy and unable to do much without exhaustion. But, I still have full use of limbs with the exception of left hand being weak. Who knows how this disease progresses, it is so different for everyone. So no easy answer to give you.
NancyS

 

[Lavender Lady]

I was diagnosed in Aug 2010, symptoms started in arm in Feb. 2010 now no use of left arm and hand, have feeding tube but can still eat, using walker, losing my voice and on a bipap as of today. I am fast progression.

 

[BarryG]

I was diagnosed bulbar onset in Jan 08 with symptoms first noticed in July 07. Got my first speech device in June 08, speech became completely unintelligible in middle 09, peg tube Feb 09, stopped eating completely in Jan 2010. Can still walk a few feet with my walker, arms and hands are very weak. On bipap at night since May 2010.

Not really what you're looking for as a fast (6 months or less) but plenty fast for me thanks.

 

[Jellycat]

Hello Ray, my pALS was diagnosed bulbar als Nov 09, first symptoms April 09. Jan 10 no speech, Feb 10 peg placed. Walking difficulty started Dec 09. Full time wheelchair user June 10, torso, arm & hand weakness started summer 10, bipap Dec 10. She went rapidly downhill til peg, then things steadied up a bit. Decline has been gradual but continual since. One researcher told me that the disease tends to continue at the rate it began with but I really don't know if that's true. I've heard people call my pals progression both fast and slow so I just don't know. I think what you say yourself is truest; noone really knows how long or short a time someone has to live. I hope your wife is recouperating well.

 

[Raydavis]

Thank you all for your input. They all mean a lot. Im at home with my dog and cat, and I wonder about a number of things. Money, first of all. We have been using her retirement up until now and I have felt like a burden to be honest. My faith continues to keep me strong in this weakness, but the house gets very quiet at times. I know there are some who know that feeling. Thank you all again. In Him Ray

 

[BedPost]

...loss of some range of motion in rt shoulder in Sep. '09.
In hospital in mid Jan. '10 for fatigue & severe hypertension.
Surgery for severe cervical stenosis a week later.
Lost ability to stand/walk in May.
Peg & trach for Xmas.

I can still move a mouse w/left hand.
I still talk.
I can voluntarily twitch almost any muscle but cannot overcome gravity w/any.

Is all that fast enough?

 

[Miss]

Bedpost, I am so sorry for your quick progression. I thought my husband's was fast. I think when it goes this fast, it is hard to wrap your mind around what is happening. My thoughts are with you today.

 

[arkallen]

Hello Ray,
The house can get quiet cant it? Ive been loosing mobility for two years, power wheel chair since May 2010. Just now loosing speech and beginning to use speech technology instead. Curiously I still don't have a confirmed diagnosis. I still get out of the house pretty often on my own, but when I cant the walls sometimes seem to close in don't they?

Good to meet you here on the Forum, and I hope that you and your wife are able to discover the internal spaces of life even as the outside world closes in. Keep the faith!

Blessings,
R.

 

[Raydavis]

Hi everyone, I thank you for your support. Everyone of you helped and I wish each of you God's rest and peace. I often wonder if this is working in place where I don't feel any activity. Is this a sneaky disease or just jumps on you before you know. It sounds like is both. Thank you all and my faith will be with you in your journey. Ravis

 

[caldona]

You know I am truly amazed when someone has a problem being diagnosed. I went to a neurosurgeon for neck surgery he told me I needed to see a neurologist he got me an appointment and within one hour I had the news. The sooner you get a diagnosis the sooner Medicare starts paying

 

[Raydavis]

Hello everyone, My wife is back at home and beginning a slow recovery. All the reports for her condition are very encouraging, thank you for your prays and concerns. Me? I'm loosing weight and seem to loose my balance during the day. I am puzzled about my progress. I have Balbar ALS but my throat seems to be not effected, but me speech is gone. And, my lower lungs are being to loose its effectiveness. I am just wounding something can progress quickly. I have been told everything is like the roll of the dice, but I was just wandering. I am very glad my wife has started her recovery with His help. Take care. In Him Ray

 

[Marjorie R. Wilcox]

Nice to know you and your wife , Ray. Welcome to the forum, and my husband and I wish you all the best that can be had with all you deal with. You are to be commended with your attutude. We look forward to hearing about you both.