Clinic Visit

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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
Have my clinic visit at Duke next Tuesday. If anyone has any questions specific to Bedlack, I'd be happy to ask for you.

Vince
 
Good luck. If you can let us know what he thinks is on the horizon as well as what he thinks about current clinical trials
 
Certainly will Nikki. Also, I'll share with him the recent post on here regarding Nuedexta and the report that it improves speech and swallowing. Wish I could take it but I can't. I've tried 3 times. I am trying the cough syrup, however.
 
hey vince, just got back from my 4th clinic visit since feb 15 at UVA dr burns great guy and friends w/bedlack. all went well and even managed to learn a few things about peg tubes etc. never to early to get info for down the line. i go to durham va to see bedlack on nov 16 so lets compare notes. as of now i can't think of any thing to ask him maybe i am just fried from the long day and ride. on lunarich- now- provantage talk later chally
 
i have a question for him. alsuntangled just completed a report on the supplement protandim. their conclusion was that further study of protandim was warranted. would you ask him if he will be having a clinical trial with protandim?
 
Vince I would like you to ask him how cute he thinks your grandson is!

How's your other DIL going?

God bless, Janelle x
 
Thanks Janelle. Actually her water broke at 3:00 a.m. this morning. They are at the hospital now. We will be leaving to join them shortly :)

Vince
 
Congratulations!
 
Hoping for a little girl this time. That would be awesome.

Vince
 
wow vince another already! that's great. congratulations and good luck tomorrow. love ya chally
 
Not the clinic visit I had hoped for. My FVC went from 75% down to 68% in only 6 weeks and I dropped another 4 points on the ALSFRS. They want to put me on the trilogy. They also want me to schedule a feeding tube sooner rather than later. Kind of a slap in the face but it is what it is. I asked why not a BiPap and why straight to the trilogy and they said in their opinion trilogy works better and they no longer prescribe BiPap for patients. Bedlack gave me some opinions on Protandim and Nuedexta. I'll post those in the ALS Research sub forum.

Vince
 
He also told me that the RIG placement of the feeding tube was no better than the traditional surgical approach. Again, that surprised me after all I've read on this forum. I'm a little deflated. I have to go back in 2 months.

Vince
 
Vince I'm sorry that each loss that is measured really is another slap in the face. We know it is going to happen, we feel and see it happening, they measure and confirm it, yet it's still a kind of shock and another grieving all over again.

I don't know a lot about bipap, but I believe the trilogy has many more options than regular bipap machines.

The RIG placement is normally used when breathing is a real issue and the patient cannot lay flat. However he is correct it's not 'better' as such. Some docs prefer to use RIG as a precaution with breathing, others will make the call on the results of current breathing tests.

If you have a peg placed now, you are truly doing yourself a favour. Your breathing is still pretty good, even if it has dropped.

If you get the peg placed before you really need it or before your breathing is really poor you have a much better chance of a good fast recovery from surgery and you can ensure you are getting heaps of calories and fluids as you decline.

My Chris always said yes he would accept a peg. However he kept saying not until he felt he needed it. So he was almost unable to eat, was emaciated and dehydrated and suddenly wanted all strings pulled to get it happening fast. He was lucky our speechie did pull strings and it happened fast. However he never adjusted well to it and he never put on any weight (indeed he continued to lose weight) because he still resisted using it and felt sick and tired all the time. This was because his body was already in starvation mode. PALS need to avoid hitting that point as it's terribly difficult to reverse even with a peg in place after the fact.

So as hard as it is to take them saying you need to get things going now, please understand that research shows early peg and bipap use will give you so much better quality of life as your nutrition and breathing are supported before you really take a dive in those areas.

IIWII and it sucks.
 
Sorry Vince. Were you able to make a good seal? And our numbers can fluctuant a fair amount. Fatigue time of day time of last meal. That said early bipap ( or trilogy) has been shown to improve quality of life. And early feeding tube is the way to go. But I understand it seems like progression and is discouraging. Don't worry too much about the ALS FRS. It is very imprecise and sometimes one very small change drops us several points at once.

Really interesting about that RIG comment. MGH was emphatic my sister needed RIG ( she had left it too long true, but they said it was blanket recommendation for everyone)
 
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