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the MDA event in Houston is on Saturday, Feb. 15, 10:00 to 11:30 a.m.
 
Nikki J.. without causing you more things to delete, I can email you or you can email me. I put something in the post that is sensitive without thinking...

Max-Thank you very much. We are checking to see if either of the clinics will give him a PPO waiver or something that will allow Humana to have him in network or something. Found this out today. Hoping to find out about it on Monday. Thanks for the info on the MDA thing.. I can't make it tomorrow but once I get my head together I will want to participate in those things.

yes, it is good he already has caregivers... that does help... my mom is on palliative care now.. she didn't look so great on Wed night when I was over there... my poor dad.. I just ache for him.

The other thing that is breaking my heart is my 5 year old... he loves his papa so much and he still thinks its his back.. he keeps asking if papa's back is better.... wow.

Question.... what do you guys think about the drug riluzole? I am still researching but I thought ya'll would have opinions?

Boy, what a week. I am worn out. I made an appointment with my counselor I used to see when my brother passed... Tues. I am looking forward to it.. somehow she manages to put things into perspective for me. glass half full vs. empty

Thank you guys so much.. great help. KIM
 
Sent you an email. Deleted your post containing your email address

Rilutek. Supposedly extends life by 10 percent. Generally extrapolated to 2 or 3 months. Some seem to notice a slowing of progression others not. Of course has potential for side effects and needs monitoring of liver function. Expensive. If insurance pays maybe wprth a try but not a miracle.

Is your dad a vet? There are great resources if so. If he is not already on social security he can apply now for ssdi. Unlike most disabilities there is not the 2 year wait.

I am sorry about your son. You have to decide what to tell him and when. There are threads about what to tell children.

Take things one day at a time and take time for yourself as well
 
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Nikkie- thanks for your help. My dad is not a vet... I have figured out they do have wonderful resources.

I spent most of the day at my dad's.. we were discussing supplements he should start taking etc. I am not thinking the rilutek is very good, seems he may get more out of trying coconut oil for goodness sakes!

I read about the Deanna protocol.... it seems there are varying opinions on that .. I guess we are in the these natural things can't hurt so why not.. does your loved one do any of these natural supplements?

yeah, about my son, I am in no hurry to tell him.. when I need to I will. Man.. so hard.. its amazing how you are just cruising on in life.. and BOOM! Upside down.

Anyway, thanks again so much.
 
It does not have to be either or for rilutek vs other things. My sister takes rilutek- has from the start she is moderately fast progressor but we are familial and tend to be faster progressors than average. Has it helped ? Who knows?
Some people here are doing DP. The newer form is less pills so easier than it used to be. Coconut oil also seems reasonable to try. My sister tried some other things creatinine, off label tamoxifen and b12. She noticed no difference when she stopped.
Your dad is lucky to have you!
 
The ALS clinic here is sponsored by MDA ALS division. They foot the bill, so we don't have to concern ourselves with who is in network. You should see if it's that way in Houston as well. Check the CDC ALS clinic locator.


Also, see John1's comment on the recent thread, "riluzole and ALS." i found it very informative.
 
Nikki- thanks for you help and opinion.. My dad is taking coconut oil and I ordred some of the most important items on the deanna protocol for him to start as I continue to research! I am not sleeping and my computer is getting quite the workout! I am sleeping, just staying up too late! I just found out he got a scooter... a jazzy.. I assume used cause my dad has never bought a new car, so I think the same would go for the scooter. Must be so hard. I keep trying to ask him if he wants to do things, like a NASCAR race.. he loves nascar, but he doesn't. He says he just doesn't feel like it. I am sure he is depressed.. who wouldn't be. Thanks again.. I have been lucky to have him as my dad.. best dad ever.

adozi- I will check into that.. thanks so much for the suggestion. There is so much to learn and figure out.

Thanks again.. see what this week brings as last week was one of the worst in my life.. and more to come. Lovely.
 
Yes he is likely feeling depressed, but also this disease causes a lot of tiredness. A big day out can cause several days of feeling drained. So give him a little time and you probably can plan some nice outings that he would love.

You are over the first week, that's good news!
 
Nikki- thanks for the advice... really appreciate it. another quick question.. he has his scooter now, but no way to transport it... walking is really difficult, I am leaning towards advising him to go ahead and get the van vs. a rack to hall the scooter... but I don't want to scare him by suggesting it... what is your opinion on what he should do. Just started affecting right leg yesterday.. has been left but has balance issues.

Thanks again and again. KIM
 
Hey Kim see you got good advice from Dalvin. In general try to keep ahead of everything and get things as soon as possible rather than play catch up. Whatever you decide before you do it think through how it is going to work. Who is driving the vehicle? My sister has a van but her husband is the only person who can/will drive it. The caregivers will not. If they take her somewhere it is in a regular car with a folding wheelchair in the trunk. ( which reminds me in general insurance only pays for one mobility device ( scooter, wheelchair, power chair every 5 years). Make sure it is the power chair they cost about 40000 dollars
 
I go to Texas Neurology in Dallas. It is an MDA clinic. You see all the specialist in one day. They also have an MDA rep who will help you get things you need.

So sorry you have this going on in your life. But this is a good place to gain support and information.

Also, hello fellow Texan.

Tracy
 
Your ALS clinic will have a seating specialist. Be sure you have an ALS specialist write the prescription for his chair; docs who are not versed can order the wrong one, and then you're stuck with it for five years! You need to find a multidisciplinary clinic ASAP.
 
I know we need clinic.. we are trying to get him into dr. appell.... working thru insurance issues....

There is so much.. I am overwhelmed.. thanks so much for helping me.

on top of all this, I have a very demanding job and a 5 year old... its tough to get it all done. So glad I found this site as you are teaching me so much.

I hope to know tomorrow about the doctor situation.

texastracy- hello to you too. We are in the houston area... so sorry you have this horrible disease... I am so distraught as to how many people have it and so many of them are young... my age or younger.. so horrible.

Nikki- I hear ya. he is still driving as of now.. so I am not sure what to do. I am also so sorry about your sister.. must be so very difficult..


Well, I booked a cruise today for us, my dad, me and my son to join his brother and his family on their vacation.... royal carribean out of Galveston. Accessible room. We have until April to decide to go or cancel... I am hoping he will feel well enough to do it.. its June 15th... he has never been on one, but its the only thing he seemed at all interested in doing. Nervous about his progression between now and then.

oh i need a crystal ball... thanks again so very much. Kim
 
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