First Clinic Visit

[gooseberry]

Pete they have been very kind and caring at ours as well. We needed that in the beginning. Now we get the drug push as well. Steve goes Friday and is thinking he will say its his last. No trials have been offered, we have asked and researched on our own. Kind of at a loss why .

 

[Nikki J]

I get the frustration. This disease is decimating our family. Please everyone actively seek out biomarker studies. They need samples to work with. It won't help us but those after us. you can often do biomarkers at a clinic you are not attending. I have so did a Canadian friend who found a one day study in a clinic in a city she was going to visit
There should be plenty of samples around but it seems like not so. I was told researchers have to apply to be considered to get a tiny bit of my csf from NIH after they have given out samples to the first tier of researchers with the study. I have seen several studies that PAY you to have a spinal tap

 

[gooseberry]

Nikki that is part of the frustration. First we were told there weren't enough patients in our part of FL to support a ft als practice. The clinic has a 5 month wait to get in to see the mnd specialist and go to clinic. It is insane. Once at clinic, no one seems to have time for you. We have go e an hour not seeing anyone then get five minutes with a provider because they are overbooking our clinic. It has become very difficult to have the time you need to ask and get answered these questions.

 

[tripete]

I can tell you that these 4-5 hr clinic visits cost a boat load of money and ultimately I get more help here. To keep disability, SSDI and medicare I have been told that I need to continue to go. They should pay me to have the benefit of watching me die.

 

[Nikki J]

That does not sound right Pete. Perhaps you need some medical person to document you are not cured! But there are certainly people who quit clinic and just have a local neuro and/or pcp.
Gooseberry you can see the options by checking clinical trials site and then also check NEALS consortium and browse their clinical studies. For some reason biomarkers do not always make the clinical trials site. I am willing to bet Mayo Jax is doing biomarkers but that is probably too far/ too hard for you guys ? For people who are early in the disease process please try to be proactive. It gets harder to do these studies as we progress.

 

[chally]

hey vince i go to UVA als clinic thursday 4th this my second visit the first was the ice breaker and not much help i think this one will be the same so i am going only to see the dr. that diagnosed me back in feb. i feel a lot like pete does about all this "help" i mean didn't LOU have this back in the 30's and you say there is no cure ! how long does clinic trials take? and where oh where is all that "ice water" money? still grateful chally

 

[gooseberry]

Jacksonville is a.four hr drive and would involve an over night. Steve really struggles in the heat with his breathing so we live in a meat locker ..the thermostat is on 68. He would have a hard time with a drive that long with the sun and heat-even with the air conditioning on and the trilogy going.

We have looked at the trials page on the nih site. Many require higher lung function than he has orhe won't donate pieces...his words.

 

[Nikki J]

Yes I thought Jax was too hard. That is why I said new PALS should look into things early on. Donate pieces? As in afterward? Very personal and needs to be ok with both PALS and family. I applaud people who do. My aunt did. I am still undecided I admit. And the interventionals are hard to qualify for. Lots of things to trip you up. The observational not really except the effort needed becomes too much and we have to disqualify ourselves

 

[gooseberry]

Steve decided to donate his brain and spinal cord after death but Julien can't fathom the idea of his dad not being whole. He was so upset by it. He got Steve to promise , at least for now, he wouldn't sign the paperwork. Julien asks a lot of good questions and makes you consider many aspects of donation,trials,etc. He has found several trials for Steve but Steve has been wait listed for them.