Father was just given “probable diagnosis”

Status
Not open for further replies.

hopefuldaughter

New member
Joined
Mar 18, 2018
Messages
2
Reason
Loved one DX
Country
US
State
IL
Hi and thank you in advance for reading-

My dad is 64 and overall is a healthy, active person. To say we are devastated is an understatement- it seemingly came out of nowhere and has turned our world upside down. He is scheduled for a 5 day evaluation at the Mayo Clinic in Rochester at the end of next month; we are hopeful that once he completes that, we will be able to enroll him in one of the stem cell studies (as briefly suggested by his neurologist). After thoroughly researching these studies and Brainstorm in general, it seems the studies/trials are cut off at age 60? Does anyone have advice or information about these trials and if his age will be an issue? Or just any advice in general to a family who is very early in the process and desperate to slow the progression in any ways possible? My heart goes out to all of you battling or caring for those battling this wretched, awful disease. My hope is that a cure is in the distant future and I vow to work until that is reality.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Welcome, Hopeful, and sorry to hear about your dad. Every trial can set its own criteria, as approved by regulatory agencies and IRBs. Brainstorm's current trial does have 60 as a cutoff [theirs is a more interventional procedure than just taking a drug], but other trials will go past that. You can find options at clinicaltrials.gov.

As you browse here (the search link is also up top), you will see recommendations of what merits ongoing fine-tuning off the top, like nutrition, hydration, sleep, social interaction, prompt respiratory support when needed, same for mobility devices and transfer aids. Some supplements from what we know may have a reasonable risk-to-benefit track record.

Best,
Laurie
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Ditto to everything that Laurie said.

Where is he planning to get his care in the long term? You do have excellent options there in Chicago at Northwestern and the University of Chicago. I am guessing his diagnosing doctor was not an ALS specialist if he did not know the age restriction on Brainstorm.

I am glad he has a second opinion set up but I would make an appointment too to be seen locally where he can be followed. There is usually a wait so I would not delay until after the Mayo visit to call.

I think Brainstorm is unusual with the 60 age cutoff so if he does want to try a trial there should be others to look at NEALS which is a consortium of ALS specialists has a webinar coming up on the clinical trial pipeline https://www.neals.org/for-people-with-als-caregivers/educational-webinars/als-clinical-trial-pipeline-series-spring-2018
 

hopefuldaughter

New member
Joined
Mar 18, 2018
Messages
2
Reason
Loved one DX
Country
US
State
IL
Thank you Laurie and Nikki for your replies and helpful guidance. My dad’s diagnosis was unfortunately just confirmed at Mayo so our work is cut out for us. We are trying to find a trial that goes beyond age 60 but my understanding is that we have our work cut out for us in terms of options. While I wish we weren’t facing this awful disease and battle ahead, I’m appreciative of all of the information I’ve learned already from this site. Thank you for your help & support.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,816
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Actually the Brainstorm trial going on right now is for PALS age 18-60 at the time of enrollment, so 60 is ok. Mayo in MN is one of the study sites.

So sorry to hear your dad’s diagnosis was confirmed.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,263
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Karen, HD said earlier that her dad is 64. HD, very sorry to hear about the confirmation. Still, bear in mind that the benefit he can get from doing lots of things right, that already exist, is an every-day benefit, as opposed to trials in which placebo or a shorter treatment period is possible. So don't discount the possibilities -- let us know how we can help.

Best,
Laurie
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,816
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
I stand corrected. I should have read the original post more carefully.
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks