Progression;Timelines

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Timbow

New member
Joined
Mar 25, 2015
Messages
2
Reason
Loved one DX
Diagnosis
09/2013
Country
ca
State
ab
City
Calgary
The stickies in this forum are great. I signed up to get an idea of the typical progression and timelines of ALS. My dad was diagnosed 20 months ago ( we just found out in Jan. He kept it as secret). I'm trying to anticipate what he may need and what to expect as a caregiver. I need to let my employer know if leave is required and when. It is so hard not knowing whats next.
Tim
 
Hi Tim and welcome.

Every PALS is so different there is no way to answer your question.

Maybe you could start by telling us what kind of early symptoms your dad had and where he is up to in his progression now.

Then at least we can try to help you look at what kind of support you could best offer him for where he is at?

We all ask this question especially early after diagnosis, but no one can say. I still don't know if I would have been better off knowing at diagnosis that my Chris only had 11 months left or not. Actually they could never have projected this as even though he was rapid progression he made so many choices that assisted to speed his progression, no one could have predicted the falls and injuries nor the aspiration pneumonia and fungal infections against any timeline.

The more you can tell us, the more we can support you back :)
 
Welcome to our community Tim...one that we all wish was here for better reasons, but am grateful that it's here.
 
Hi Tim, and welcome. I'm glad you read the stickies--they do have a lot of information. As you've read, there is just no way to predict progression, as everyone is different and it can speed up or slow down at any time. I've gotten a lot of information just reading the threads here. Tillie asks some good questions. Also, is your dad living alone, with you, with someone else?

My best advice is to get equipment into place and try to live for today. Aside from equiping for the future, worrying too much will just rob you of the time you have.

Again, welcome to our little family.
 
Hi Tim, so if he was able to hide it for 20 months that is not too fast progression so that is good. start with attending clinic with him and find out what they say. as far as caregiving, ask him what he needs. he may be stubborn and deny needing any help, but you can over come that by visiting for a week or two and observing. daily living is the chanllenge for most Pals in the early stages--cleaning, cooking, getting around. first things you need ot look at is his current living situation--with someone, alone, stairs, accessible, able to modify. Also first thing to do is make sure he has his paperwork in order--wills, medical power of attorney, living will. know his wishes for "what if" scenarios like a vent o when to DNR, because that is a real possibility now with ALS on the horizon.
 
PatientsLikeMe has a feature called Functional Rating Scale (FRS) where you rate yourself on various criteria to obtain a numerical value for your current health. You keep reevaluating yourself over time to chart your progression. I just checked my own profile to see that in March 2014 I was at 30, and now, one year later, I am down to 21 (I think the highest score – normal health – is 48). You can see the profiles of other people with ALS, and you will see that they are quite varied. There are many people who have been diagnosed in the past few years, but there are also some who have been diagnosed 10 or more years ago. Progression can vary quite a lot. You can suggest setting up a profile to your dad. I find it useful for keeping track of my own condition, as well as treatments and medications.
 
>Hi Tim, and welcome. I'm glad you read the stickies--they do have a lot of information. As you've read, there is just no way to predict progression, as everyone is different and it can speed up or slow down at any time.

Ditto that!
 
Tim, Is your dad a vet? There are a lot of services for him if he is and he may not know or feel he shouldn't take advantage of them. He should if he is able to. Barbie's suggestion is a good. Go spend some time with him and watch, observe him....covertly of course:) There is a sticky for equipment that is needed. No need to go buy all that. You need different things at different times and often can adapt something you have for use.

I am sorry you're here but this is a very helpful group. Tell us more and we can make better suggestions for you. Steph
 
Thanks everyone.
Yes my Dad does live alone and he is not a Vet.
This weekend we convinced him to move to a seniors lodge where there is assistance for getting dressed, laundry, meals etc. This was a big victory for us (and a huge relief). I bought him some living aids and was surprised he was pleased to have them. For now he seems to be in a bit of denial about his condition. He still works long days and is exhausted in the evening. I have spend a lot of time reading the forum and I think we are in pretty good shape for supporting him for then next while. I appreciate the responses.
 
Works long days?

He should be retired on disability social security and getting on with his bucket list while he still can. Now if working is his ultimate bucket list, then so be it.

But he will soon be much more challenged to do any traveling.

I am fortunate to have a father in law who took charge. He was the first to call the local als support system and find out all the resources available to us. He found an elevator lift on craigslist and took it out of the house and installed it in mine. He is re-modeling my bathroom to make it wheel chair accessible. He got me a lift recliner chair for my living room. He paid for a trip for all his children's families to go to my favorite place in Mexico, which happens to be wheelchair accessible and has a perfect spot for me to sit under a palopa on the back deck and watch the surfers all day.

Don't wait to do anything, do it now. Waste Not Thye Hour.
 
I found the patients like me website, but I can't find the Functional Rating Scale. I found the information about it, but not where to fill out the questionnaire. Can you help me?
 
When you set up your account was it for your PALS. If ALS is one of the conditions you say the person has you should see the scale when you go to " my profile" I think it is the third thing down. I don't think you can enter historical information though from before joining. Has anyone found a way?
 
Thank you! I figured it out.
 
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