My pleasure - don't worry too much if they don't want to do a blood gas. Again numbers are more for them than you and your PALS. How he feels is all that matters.
The bipap settings will tell them more, and keeping that adjusted to needs is important for his quality of life. Let him use it as much as he likes, it's all about that really.
The lack of interest in the games now may be a mixture of CO2 and declining cognitive ability.
It's such a maze, and no one really knows the way through, but we hold hands and give it a go xxx
Firstly the problem is getting rid of CO2, not getting enough O2 in, so rapid shallow breathing is a key. That shallow breathing just doesn't clear the CO2 and guess what the effects are - sleepiness, confusion, and fogginess. Add that to FTD and well you are living it.
It's fine to post more than one message to get it all across, but with just a few more posts on the site you should be able to do the private ones.
Keep talking, it's important not to suffer this alone.
I'm very happy to talk with you - if you can make a few more posts in the main forum you should tip over to having private message privileges and we can talk more if you like? We don't know the exact number but suspect around 30 - 35 posts. You could make a post in the roll call thread, and just a short replies to a few other threads. (make sure they are not in the off topic section as they don't add to your post count)
Sometimes it seems things are 'speeding' because neurones are dying off daily, but some use of a limb or body area may continue until a tipping point is reach. What I mean is once there are not enough muscles working to do something like raise a finger. It may seem for example that the arm was just progressively weak for many months, then it may seem that over only a few weeks all use of both arm and hand cease.
What do you mean by 'speeding up'?
I totally get it when you say you can't deal with thinking he has years of this.
Breathing decline will impact on dementia symptoms, so it's like the 2 horrors are in a race.
Hi Mary, I'm so sorry for the situation you find yourself and your husband in.
As a progressive disease, it is awful knowing we will only ever watch a downward spiral, and both his ALS and his FTD are progressive diseases.
We know that what will end things is his breathing, and that is progressively worsening. But no one can say what that means in terms of a time prognosis because this disease is so unpredictable.
The numbers are only indications, some PALS don't cope well at 50% while others feel good in themselves at 20%. Some PALS die suddenly at 50% and others use bipap for months or even a couple of years at less than 20%. We don't know why. The fact he is happy in himself is truly a blessing. The amount of time he sleeps possibly indicates how much his breathing is affecting him, but is not a problem.
Another thought: University researchers have conflicts. The head prof needs to publish "something" to keep his job, and the assistants actually doing the research are students. Non-university research institutes are the ones I would support.
Thanks for asking a question that made me think!
By the way, I'd love to read any stories of your military service; where you went, what you did, the new and unusual things you saw.
I'm not familiar with the VA donation program. I only know two tidbits. They have a brain bank and an ALS researcher. Also, I know that the computer database of millions of medical records is used by researchers around the US (maybe the world) because it is the biggest medical database in the world, contains every tiny little bit of information about the patients, and spans decades.
But I don't think that the VA efforts are promising for ALS research. VA has a limited budget and is very, very overworked They work with priorities set by a chain of command that is under fire for political survival. By contrast, civilian institutions can gather extra millions (remember the Ice Bucket Challenge) and their priorities are not set by politicians.
When I was sure Krissy was no longer breathing and her heart no longer beating, and her eyes no longer reactive to a flashlight, I called two numbers. First, the funeral home. Then, the Mayo Clinic donation hotline. The two of them coordinated getting the body into surgery and back to the mortician in time for an open casket funeral.
Krissy chose the Mayo Clinic in Jacksonville, FL because we were impressed by the world class people who gave us unusual service. Instead of the patient going to the doctor, we stayed in a room with the main ALS doctor, and whenever we asked a question, he would call the proper specialist to pop in and explain stuff to us. We got the impression that their workload, their talent, and the money behind them would allow them to make the most of any donated body parts.