Are we so 'different?'

[cubcake]

I'm reading through the drug trials, and I'm wondering, can our loved ones, with both ALS and FTD ever get into any of them? Are we considered so different, so hopeless, that we should just go home and wait for the journey to run it's course? I don't mean to sound macabre, it's just how I'm feeling.

I was talking about progression with one of the ALS doctors and he started talking about more invasive measures, like a feeding tube "which I would extremely discourage, because of the FTD," and a vent, "but that's really not a consideration, in a case like yours." Really? So.......nothing then?

I'm just lost, depressed and feeling hopeless.

 

[sadiemae]

Do you see doctors at the Forbes Norris Clinic, If so shame on them, if not go see them!

 

[susanf]

That is cruel to say on the Doctors part. That is NOT their call. It's a personal decision. I would find a new Doctor.

 

[cubcake]

Do you see doctors at the Forbes Norris Clinic, If so shame on them, if not go see them!

Yes, and actually, they are the ONLY ones that are helping us. Kaiser is an absolute joke and UCSF is using us for studies, but I often wonder if they are taking, even that, seriously.

Couldn't/wouldn't even think about walking from FN!

I'm gathering from the comments that you feel that we do have those options? He, of course, has never had the capacity, since the diagnosis, to make those decisions on his own. I don't even think he understands fully that his illness has a definite end.

It's breaking my heart.

You know, we really could use a bunch of more descriptive emoticons on this site. I need one with it's heart in it's throat, tears shooting out of it's eyes, and a big pool of them at it's feet. Anyone?

 

[sadiemae]

Are you in touch with KatieC?

 

[CoachMeg]

Cubcake - I am astonished as to what the doctor's have told you. My husband is with Kaiser and our treatment has been phenomenal. From his first appointment to our last, he has always been treated with care and kindness from his neuro and others. I am so sorry your experience has not been the same.

I do know that the FTD changes the dynamic of ALS. We are fortunate to not have to deal with that. Katie has been a wonderful help and support and she may have more info regarding the FTD. I wish you and your husband all the best.

If you are not happy with who you are seeing, do not be shy about requesting different docs. I don't care where you are being seen, he needs to be viewed as a person and not just a study.

Good luck and keep us posted.
Love and light
Meg

p.s. btw - his neuro is at the Hayward clinic and his name is Dr. North. My husband's neuro here in Roseville referred him as he is the specialist in ALS.

 

[cubcake]

Wow....just read Dr North's bio.....he sounds wonderful! We are giving him a call. AND Hayward is only 18 miles from here!

Thank you, thank you, thank you!

 

[LizT]

your drs may say things to make you feel or think that you CANNOT do these things for your husband- but they dont get to decide that he doesnt get them.
you may have to go to a different dr, but thats a right that you guys have.

 

[Katie C]

Oh my gosh... you're in San Ramon and not seeing Dr North!?!?! However did that happen!? I feel bad that i didn't catch that before... you will love Dr North. Please tell him Katie of Glen & Katie still thinks of him often! (If you have any trouble getting the referral let me know)

Now the not as good news. The doctors aren't really trying to be cruel or uncaring. The simple fact of the matter is that PALS with FTD have an extremely low level of compliance. It is because of the lack of executive function... because they can't make the connection between the symptom and the disease, they can't make the connection that the more aggressive interventions would help them. For example... would a PEG tube used properly have helped Glen? In theory yes... but he still would have gone looking for "real food"... even though we tried to keep it all locked up so he wouldn't try to eat anything that hadn't been pureed. And still when nobody was looking he found that apple. There comes a point where you want to think carefully about how much you want to fight with him over things.

Kaiser provided us with bipap, physical and occupational therapy, etc. Once we went to hospice, all equipment was provided, there was no longer a copay for meds, we had in home help etc etc. Also... she's down at Santa Teresa but the psychiatrist we had (through Dr North) was quite good, and at least we know she's had at least one ALS/FTD patient! Again... very easy to contact via e-mail and helpful with med adjustments.

I think you will find Dr North open to trying things, but respectful of your wishes either way. He and his nurse, Robyn, are also fantastic about returning e-mails and phone calls. And they have their own monthly support group.

 

[CoachMeg]

I agree with all Katie said and that has been our experience too. And Katie he praised you and what wonderful people you are.

 

[cubcake]

Thank you, so much. We have an appointment on January 4th! It will be such a relief to get some help. I've felt so alone in the system. You mentioned that his assistant's name is Robyn? Bon Fredericks?

I know I'm going out on a limb here, but does anyone have the combination of Language Varient (rather than behavioral, which I think is Katie's case) FTD, along with Bulbar ALS? I'm finding that, except for the lack of control over his emotions, Fred is extremely compliant. I'm just wondering if I should expect that to change somewhere down the line.

Anyway, I appreciate, once again, the information. This forum and it's members are invaluable!

Happy Monday, all!

 

[Sequoia]

This is the thing, most pals that cant pass the preliminary tests for these drug trial, they are out of luck...and they are the ones that need these drugs the most!

I had my ALs clinic yesterday and my neuro said to drop out of the Dex trial if I felt I was not on the real drug and he would fill out the papers for compassionate access....hows that for support...but first I will get my blood results and we if the WBC is low...that is a tell tale sign that you are getting the real thing.

If any one is interested in this compassionate early access to these drugs, please PM me because the ALS-Treat Us Now! steering committee has started a group to get early access to these drugs...we are calling it Pilot 1. We will take up to 20 folks, and after that do another round. Go for it, what do you have to loose?

 

[Sequoia]

We have reached the 20 mark now, so if others want to go for compassionate access of drugs, PM your real name and email, and I will start a Pilot 2 list.

 

[Sequoia]

Well folks, we are recruiting for Pilot 1 as some have not stayed the course....so if you are interested PM me a message. We are also looking for 1 volunteer from every state and a back up for this volunteer. We want to form a strong network of pals and cals in every state this way we will present representatives throughout the US to the FDA and Drug companies. The requirements are that you know computer and web and that you volunteer 2 hr a week. We will train you.

I am in the state of Washington, anybody want to join me?

If you are interested let me know through a PM, THANKS