Slow progression

[360SMR]

It has taken a little over a year to get a diagnosis. Kaiser did not want to commit so I went for a second opinion at UCSF where I received the diagnosis. The progression had been slow for 9 months but had picked up during the last three months. I see that there are those that have made it past the 5 year mark and was wondering if there is any advice to try to do the same.

 

[lgelb]

I'm very sorry to hear this news. The diagnostic process can certainly be longer than it needs to be. As to your question, here are some of the tactics that can help improve and extend PALS' lives.

Most of all, live your life until you can't. Don't count days or years, stare at test scores, or think about "progression" all the time.

Get basic paperwork done (Medicare, advance directive, Will, estate planning, etc.) and have periodic discussions with your loved ones on how you want things to proceed and end. Then do what you love most as long as your mobility permits, and then stay connected with it another way (mentoring, etc.)

You will likely die of ALS, but probably not this week. Make it the best week you can.

Best,
Laurie

 

[Nikki J]

Hi sorry to welcome you

I am super slow progressing. I think most of it is good luck. I was diagnosed extremely early because I am FALS so I started riluzole early. It works best started early I have taken various supplements. I don’t know if any of them helped but I would consider tudca at least ( one of the components in amx0035) unless you are trying for a clinical trial. I would be trying for a trial in your place and if you are you can’t take any experimental substances within 30 days of screening.

maintaining weight, avoiding injury and avoiding overexertion are all key. The last can be tricky and you should discuss exercise with your doctor and pt. The old recommendation was to avoid exercise and do range of motion only but now some degree is considered good. You need to be very careful though. The rule I have given is if it takes more than an hour to return to baseline COMPLETELY it was too much. You also have to accept that your ability will decrease over time and adjust. Related to this is general activity If getting through your day is exhausting you need to adjust too. Save your energy for important things. Find other ways to do things ( I am expert at work arounds) accept help and when you can hire someone for things that are difficult. I used to struggle to do things the old way for as long as I could. I know now as soon as something seems remotely challenging I need to look for a solution

 

[richdees23]

As soon as you get all the important paperwork done, I would consider voice-banking ASAP. The sooner you do it, the better, while you're still able to speak clearly and easily. Check out teamgleason.org. They are very helpful.

 

[suziQ]

Agree on all, newly diagnosed last November. Blew the advise on voice banking but not sure it was good enough at that point. I can still speak but not well enough to do it now