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retiredmus2010

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Apr 12, 2011
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163
Reason
CALS
Diagnosis
04/2010
Country
US
State
Maryland
City
Princess Anne
My husband is about to experience a year with an official diagnosis of ALS. He experienced symptoms for maybe a year previous to that while the docs tried to figure out his problem. My question is: what can you all tell me about the progression? Would you say his progression is slow, medium or fast. I know that everyone is different and the progression journey remains personalized. He started with drop foot, (in 2009) tripping and falling. He used a cane, AFO;s using walker and now a wheel chair (manual). Docs at the ALS clinic have not given me a prognosis. Could all the wise ones on this forum give me a clue? G
 
Wish we could, but there is honestly just no way. It's one of the cruelties of the disease. Then only time I got a time line prognosis was the last time we saw Dr North, and he said "well.. the next 3 months will tell us a lot." Glen was gone in almost exactly 3 months.
 
Oh Katie: many thanks for trying to help me while you are coming up on a different kind of anniversary. Oh my, this is a HUMBLING disease. I wish you strength and peace. You and I are on opposite sides of the US of A I see. From the Atlantic to the Pacific.
May I ask you a question? I see from your bio that Glen was diagnosed in 2009. Did he have prior symptoms and for how long?
_________________________
G
 
Hon, it's really hard to give any type of time-frame because it's so individual. Some progress relatively slowly, and others are fast. Some things I've read have said that age on onset can figure in.

Whether or not he wants assistance with ventilation will have an impact. Stephen Hawking has lived with this disease for years.

With me, I'm in the 'diagnosis' phase--with symptoms that started in my hands a little more than a year ago. Symptoms are moving to my legs now with some swallowing issues.

If his health is generally otherwise good--his prognosis should be improved. Hopefully, you're in touch with the ALS society and getting counseling and other assistance.

It's good, I think that he can manage a manual wheelchair--I could not at this point--my hands are too weak.
 
I think a decent answer for this is

Do it all. Do it now. Do, do, do.
 
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ug, wish i could edit. what i mean to say is looking back it's always 'fast'.
 
In our case, getting a diagnosis was prolonged/complicated by the dementia issues. The loss of ability to see cause and effect meant he did not see his mounting list of symptoms as at all connected. He had visible symptoms for at least 2 years before diagnosis, got a couple of wrong diagnoses during that period, etc. Interesting... I was actually talking to Glen's chiropractor this morning. We hadn't spoken in a couple of years! He said he had told Glen at least two years before diagnosis that he could tell there was something neurological going on and that he needed to see his gp for a referral. Needless to say.. that info never made it to my ears.
 
My Doc says that progression is linear. You have some milestones and can plot a rough progression over time now.
Unfortunately, some folks experience spurts where things do speed up. But I think by now you can get a general idea.
 
As you and others have mentioned it is a very individual disease. A couple of key indicators is the ALSFRS (functional rating scale) that can easily be tracked and plotted. Also the obvious is is your breathing test scores such as FVC and NIF. Honestlty I think you will drive yourself crazy trying to decide timelines and progression speed etc.

Just take one day at a time and be thankful for everyday you have!
 
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While progression is linear, that doesn't mean predictable. Just means this is not a disease that goes into remission where maybe you regain use of something you've lost. The rate of progression varies from person to person and sometimes is faster or slower for the same individual.
 
I've read that speed of getting the diagnosis is an indicator of sorts (in other words not certain, but probable). For his foot drop to begin a year before his diagnosis to me sounds average. I'm saying this because while there is nothing exact about this; everyone has told you the truth! there is some reason to think he is average in progression. And he may plateau or he may speed up--these are unknowns.

Ann
 
I was always searching for these answers so hopefully reading about others' progression will give you some indication. I hop ethis helps you in some small way. I am so sorry your husband and you are dealing with this terrible disease.

My dad's progression was something like this...

11/08 Super active and healthy, but was feeling tingling and twitching in legs, his Dr. said "it was nothing to worry about"
1/09 Downhill skiing in Colorado though he knew "something was off"
2/09 Foot drop and slight hand weakness, became noticeable to family
5/09 MRI and typical tests indicated ALS, local Neurologist DXd ALS on his 61st birthday
7/09 walking very slowly with a cane, difficulty standing w/o holding on, ALS confirmed by 2nd opinion Mayo/Rochester MN - told at this time they could see the ALS had already spread to entire body through the MRI, they considered his an atypical case and I believe at this time we were told less than 2 years
11/09 Lots of difficulty using utensils, dressing, buttons etc., could barely walk
2/10 Hired caretaker to begin assisting with dressing and bathing in morning and driving him to work
5/10 Using wheelchair full time, caretaker now working 12 hours a day to assist with driving, dressing, feeding, moving from chair to bed, chair to wheelchair, etc.
6/10 voice noticeably horse esp at end of day, can barely move arms and hands, got his PEG
9/10 very difficult to understand, no arm or hand movement.
1/11 no voice, no longer eating solids, all feedings through PEG
4/11 after a few months plateau, sudddenly looked like it was the end, very small, shallow breaths, caretaker said it was likley his last day, spend entire day with his family, received his last rights, he passed away the next morning.
 
On the subject of tracking progression, I thought I would post the link to this article.
http://www.nytimes.com/2011/02/08/health/08als.html?_r=1

They are actually using this tool in the Emory stem cell trial. It is painless. They feel they will be able track muscle deterioration rate and come up with better time tables etc.
 
Very interesting article. Have you had your progression tracked? I know you were involved in the trials at Emory.
 
Hi RM,

As people have posted, progression rates vary widely between individuals but are generally fairly predictable for a single individual. There a rating device known as the ALSFRS or ALS functional rating scale which measures a person's impairment based on remaining abilities in areas like speech, swallowing, walking, dressing, etc. Here is a link to a University of Mass. site where you determine your score on-line. The original scale has now been modified slightly to include respiratory abilities and is known as the ALSFRS-R. This test will give you some idea of whether you have overall fast or slow progression.

ALS Functional Rating Scale

If you want a much better idea of how you compare with the ALS population (and maybe you don't want to know this) you can go to the Patients Like Me website, join it (free) and take their ALSFRS or ALSFRS-R and you will see how you fit in to the overall graph of PALS. You can actually see how your progression rate compares with all PALS. As I say, you may not want to have this information but I have found it very helpful.
 
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