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Elroydwyer

New member
Joined
Dec 11, 2015
Messages
5
Reason
CALS
Diagnosis
07/2015
Country
US
State
New York
City
Syracuse
New to the forum. My wife was diagnosed in July 2015. She has no use in her legs, can no longer lift her arms and only has marginal use of her hands. Her breathing is now deteriorating and we are currently in the hospital trying to get her acclimated to a bipap machine. We can kind of trace her first symptoms back to February or March 2015. Many of the stories I have read on here describe a progression over a number of years. This seems abnormally if not absurdly fast. Has anyone else seen this level and speed of deterioration?
 
I should also add that she is only 41. Not sure how important that is but seems very young by comparison to others.
 
Elroy,
Unfortunately, that kind of rapid progression does sometimes occur. It stands to reason that many of the posters here, but definitely not all, are seeing slower progression. Some of the CALS who have experienced this will chime in.

Just to be sure, since there are other neurological disorders that progress rapidly, she was examined by two different neurologists, at different institutions? As for age, one CDC database study showed 4% of ALS pts in the 18-39 age group and 24% 40-59.

I am sorry for what you are having to deal with, and we will all help however we can.

--Laurie
 
I'm so sorry to hear of how fast this is going.

It is sadly very common. Yes some do live a couple of years and some even longer, but rapid progression is common also. (common within a rare disease)

My Chris was gone 11 months after diagnosis and I was running the whole time to try and keep up with progression. A friend of mine who lives very near me was gone 9 months after diagnosis. Another person was recently diagnosed in our town and he was gone 2 months later.

So rapid progression does happen and it's not because you aren't doing anything right, it's this awful monster.
 
Laurie, she had seen a few neurologists but they were sure. We then went to Johns Hopkins in Baltimore and they made the diagnosis. Thank you guys for the input. I have a lot of support from friends and family but as the main caregiver it very difficult and kind of a lonely and overwhelming road.
 
Hopefully a little less lonely if you start becoming active here where you are with people who understand xx
 
Hi Elroy. I am so very sorry about your wife's diagnosis and that the progression is so frighteningly fast. My husband was 45 when the symptoms started and 46 when he was diagnosed. Please keep in touch with everyone on the forum because there are incredibly helpful members who have faced just what you are facing. You will receive the support and advice you need here.
 
Hi Elroy,
It's so hard. My husband was just diagnosed with bulbar onset ALS on August 7, 2015. I'll never forget the day. He just turned 47 two weeks ago. I still can't believe it sometimes, and I can just barely keep track of everything while still managing to take out the garbage and feed the cats. His disease also seems to be progressing rapidly, and I don't think he can even believe that it's really happening. The people here are wonderful, so I hope you keep posting, especially when things seem completely overwhelming. I think we all understand that.
 
Elroy, I'm so glad you've joined us. There is just something very helpful about people who really do understand. This is a cruel disease, but the people here are the kindest I've every met.
Becky
 
Hi Elroy, welcome to our group, sorry you and your wife are having to travel this journey, hopefully we can help and be here for you, we can hold your hand a share some hugs along the way.
Love Gem
 
Hey everyone. Quick update. The bipap is not going to be an option as she has been unable to exhale enough to expel CO2. She will be geting a trache and a feeding tube. This will now require 24 hr per day care. I think we will be getting home nursing but want her to decide whether to choose this option over a facility. Does any one know the pros and cons of each. Is there a benefit of one vs the other as far as quality of life? Also if anyone knows of resources to off set the cost of what insurance doesn't cover.
 
Welcome Elroy. I'm so sorry to meet you under these circumstances. You've had a whole lot of decisions hit you really fast. There are so many things to consider when making these care decisions. Many here will graciously offer their input, but another valuable source of information is the search function on this site. I hope you feel the love and support that is so abundant with this group.

Stef
 
Elroy,
Trach vs. sooner death is a serious decision that some people are happy with and others regret to the point of reversing it, with anguish for all involved. So please don't make it in haste just because someone's recommending it. It's still your wife's and your choice.

See the trach care required in person or on video, talk w/ the social worker, pulmnologist, etc. about your wife's likely quality/quantity of life with and without the trach. Look at posts by GilWest (gives care to a PALS w/ one), DianeH (has one), SantaJoe, Greybeard and others on the forums using the Search function. Those still living may chime in on this thread as well but have already contributed a wealth of information.

Facility vs. home -- that may hinge initially on reimbursement, complications from/tolerance of the procedure, etc. I suspect most people would prefer to stay at home if possible (is your home accessible?). There are financial strategies that you should discuss with someone more knowledgeable of your situation.

I know of no PALS receiving fully subsidized 24/7 long-term care, outside the Medicare quantity limits or via home health (people get some hours but not constant coverage reimbursed). That's another topic for a discharge planner or home health agency social worker, as States differ and I don't know your resources/ eligibility. But under pretty much any scenario, there are financial implications for a trach.

Best,
Laurie
 
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I totally agree that you need to get as much real information as you can NOW before a trach is instigated.

I don't want to impose my own personal opinions, and in some ways they were moot for us because it is not an option to get a trach in Australia. I have no experience with one personally, but I've known so many PALS and CALS over the past 3 years to see there are many sides to all parts of the equation.

I wish I could give you a list of pros and cons but without experience, and being in a different country I can't. What information are you being given by your health support team?
 
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