Does this mean it progressing faster?

Status
Not open for further replies.

krnNdug

Distinguished member
Joined
May 18, 2014
Messages
270
Reason
PALS
Diagnosis
02/2014
Country
US
State
AZ
City
Gilbert
I was diagnosed with ALS in Feb. of this year but it was suspected in Dec. The doctors also think I probably would have been diagnosed sooner except many of the symptoms were masked by my back and spinal nerve damage (I have been disabled for 12+ years with back problems). I have had the fasciculations for well over a year but thought it was just my back. The fasciculations have really increased in my lower body in the past couple of months and now they are more active in my upper body, especially my chin and mouth and triceps. My whole upper body tremors when I am closer to sleep. My question is if any of this indicates it is moving fast or not? Yesterday my legs gave out twice. It just seems to be progressing fairly rapidly. I am a really practical guy who wants to make sure everything is done before it is to late and want to prepare my wife, family and friends if I can.

Thanks,
Doug
 
Hi Doug,
Wanted to say be really really careful about falls they are so dangerous to us and can accelerate your progress if you get hurt. Do whatever you have to to be safe, afos ,walker, wheelchair.. It just is not worth the risk.
Re progression hard to say, are you weaker in those areas? Did you have EMG changes there? Also are taking new meds? After I was diagnosed I started fluoxetine to ward off depression. Stopped it after 2 weeks because it had given me restless legs. After I stopped it I realized that the increased twitching I had been having in my unaffected leg went away. You are smart to plan ahead. It makes it easier on you and your family to do that. If you wait until you are desperate for a piece of equipment for example it is hard on everyone. ( even though I am new diagnosed I have lived this for years. I am FALS and the 6th family member in my lifetime to be diagnosed)
 
Doug, you are wise to be prepared.
My wife had a very fast progression; I'll tell you now how it went. Maybe this story will help you prepare.

In November my wife tripped, so she saw a neurologist. In December she was diagnosed by EMG. January, used a cane. February, used a walker. March, wheelchair. April, power chair. May, we needed a Hoyer lift to transfer her. June, she found it difficult to control the power chair joystick. July, bedridden. August, she passed.

It was an extremely fast progression, unusual.
 
hi Doug, I doubled down on both what Mike and Nikki said.

Take it easy, take each day as it comes, and don't worry yourself into new stages of progression.

Especially don't fall. I felt again day before yesterday, but fortunately didn't hurt anything except my ego. Last time was of broken nose.
 
Hi Doug,

so sorry about your diagnosis.

It is so hard to say in advance what kind of progression you will experience. The fasics kind of give some clues, but Nikki raised a great point about how other things could influence the fasics too, so they aren't a true indication.

What I would say however is you are on the right track - try to stay a step ahead by anticipating what is happening. Start now to look at mobility aids that will prevent falls. As Nikki said, falls are so dangerous! It's not just that you may injure yourself falling, that is dangerous enough, it's what any injury, even minor ones can do to your progression.

My husband had rapid progression. However he also had FTD and refused any attempts at safety. He viewed attempts at safety to be my attempts to see him wasted away and bedridden quickly (paranoia is part of FTD).

So he fell often, and he had serious falls that sped up his progression and made his quality of life awful.

Still he refused safety - he said clearly "I would rather die doing something I want to do than rot away in a bed".

I said clearly - "I do not want to have you fall and bleed to death on the floor in front of me".

So start now to get ready for losing your ability to walk and get equipment in place. It doesn't matter if you have equipment that you don't use or hardly use sitting in a room. But if one day you wake up and your legs refuse to work at all, and you don't have things in place, you are in crisis. This way, if your progression is fast, you are prepared, and if it's not so fast, you are still prepared.
 
Thanks all. I am blessed with a great wife who did practically everything before this, now she dos everything. I hate seeing her cry and appreciate you all saying to be careful and prepared. I am in the middle of a letter to her and it is hard going as you can imagine. We are going to the mobility store to talk about the trade we are doing with my car lift for the Trixie lift. I am sure he will allow me to leave it there since he has had it for 3 years already. I still need to buy a battery, charger and sling which would be around $1000 I wonder if I should buy a new one for for around $1200-1600. Expanded links below - remove spaces between . & / - don't include parenthesis

www . phc-online . com / Powered_Patient_Lift_Center_s/46.htm (a few lifts)

www . spinlife . com / critpath/match.cfm?categoryID=110 (Best Care for $1099)

www . 1800wheelchair . com / browse/661/power-patient-lifts (Best Care for $999)
 
Status
Not open for further replies.
Back
Top