Diagnosed today

[MaxEidswick]

>I found out at the ALS clinic in Houston that they think Gileyna (finolgomid) will be a real breakthrough in treatment. currently the drug is approved for MS but has shown great promise in significantly slowing progression in ALS. Of course, the fda will probably take forever to approve it for ALS.

I have the VA head neuro considering it for me


>It might be wise to find a Dr to say you have MS so you can get this drug thru insurance. Currently Novartis prices this at $180 per PILL. The head of novartis should be put in prison in my opinion.

w/ torture

 

[Texas Quilter]

Sibling ALS - sorry you have to be here, but welcome to a great support group.
Dianne

 

[2siblingsALS]

Thank you to everyone who welcomed me to the forum. It really means a lot to know that there are other people going through this as it is not the most recognized disease out there. The Ice Bucket Challenge helped to raise awareness.
I only have mini meltdowns, meltdowns and moments of sheer terror occasionally now. I have accepted the diagnosis. It stinks but "it is what it is".
My neurologist is going to do another EMG. He has never seen such a "weird presentation" of ALS. He really knows the words to warm a girl's heart!
I am still waiting for the appointment with the ALS specialist at the Univ. of So. Florida.
If I qualify to participate in any clinical trials I am so on it! Bring them on!
I do have a unique perspective, having been a CAL first. I learned a lot the hard way. I want to share my experiences as a CAL to help other CALS not have to learn the hard way.
I am walking with a cane now as I get off balance at times. I am also using an ADA approved handheld shower head, a shower seat and had a safety bar installed today. Safety first!
Adaptive scissors which are great! Also got an adaptive toenail clipper.
Next week I am going to start working on a "book" to help PALS and CALS to communicate when the PAL can no longer speak or use their hands to point or gesture.
How I wish that I had thought of this when I was a CAL. My brother and I would both get so frustrated when I couldn't figure out what he was trying to convey.
I am blessed with a loving, caring husband who has vowed to take care of me at home. I told him that he had my blessing to put me in a nursing home if my care became too much. He was not happy to hear that but I don't want him to feel guilty if it comes to that.
All we can do is to live our lives one day at a time as normally as possible. Every morning when I wake up I thank God that I can do all that I still can.
Until next time........

 

[2siblingsALS]

Hi again all! I thought of some ideas that I wanted to pass along.
My neurologist suggested to my husband and I that along with taking a multivitamin we should also take B12 and D1,000 twice a day and B Complex once a day for brain health.
I've been having a problem swallowing big pills or pills cut in half. An elderly friend suggested putting the pills in a spoon of applesauce. I use an iced tea spoon and unsweetened applesauce. It goes down slick as a whistle! Keep a glass or bottle of water handy, just in case.
Some things to think about getting and putting aside: oral syringes, an oxygen saturation meter (clips on the finger) and a mortar & pestle.
Remember the Staples button? When you pressed it it said "That was easy." I used that after doing a tube feeding. My brother got a kick of it.
Humor is a lifeline to sanity.
I set up a Caring Bridge account. It is free. You post entries in a journal to share your journey with family and friends. You can arrange to have others be able to post.
Check out my account: Sheilastunkard.
People can post messages to you. It is a great way to keep people updated.
The site also can help with personal fundraising through gofundme.
Aren't I just a fount of information? (grin!)

 

[Nikki J]

Hi again
You might want to look at speakbook for communication.
Re clinical trials as I mentioned before if you have not been gene tested worth doing as 2015 will hopefully bring some gene specific trials. If you are c9 there is also an observational study at NIH ( though you can't do interventional trials for your first 6 months in that study)

 

[gooseberry]

Sibling, do you know who you will see? Dr. Vu or Dr. Katzin? We have done well here so far. It took us a while to get in also. Doctors have retired and not yet been replaced. The staff has been really friendly and helpful. We have clinic on 11/21. Maybe we will see you....

 

[pastor]

Sibling,

So sorry that you found yourself here. There are great advantages and disadvatages to having walked this road before. Hold onto your faith. That is the only thing that will not change.
May the peace of God walk through this journey with you

 

[LoveMyKids]

Sibling - I am sorry to hear of your diagnosis but I'm glad you've joined the forum. It has meant the world to me. I had a melt down yesterday and was able to rebound quickly because so many people were there and reassured me that I'm not alone.

Thanks for being an inspiration - your dedication to your brother, your sense of humor, and your good attitude are incredible.

 

[SusanSt]

I am so sorry to have to welcome you here but there is much support and understandin here!

 

[2siblingsALS]

Fasiculations and stress

Saturday night I didn't get a wink of sleep. The muscle twitching was driving me crazy! It had never been that bad.
Then I realized that I was stressing out over the fact that Sunday would have been my brother's 66th birthday. Everything was coming back to me, all of the memories and emotions from seven years ago.
On top of that I came down with a beastly virus/cold. A perfect storm!
I can tell that I have accepted my lot as I am not getting the roller coaster emotions and monsoon tears. Instead there is a constant low level of depression.
One thing that worries me is how ALS is going to affect all of the things that I already have wrong with me, like degenerative arthritis in my spine, thinning bones, Type 2 diabetes and heart problems. I will be glad to finally get into the specialist at the Univ. of Southern Florida.
I am wondering how the holidays will be, not so much Thanksgiving but Christmas. Decorating the tree has brought tears every time I hang up one of Tom's ornaments.
The one person I truly dread telling is my 92-year-old "other mother", Vickie. She thinks of me as a daughter. She is going to take this hard.
I have to embrace the Serenity Prayer. God has helped me through some rocky places and times before. This time it is rockier than the Grand Canyon! I have my faith, my loving, caring husband, caring family and friends, a supportive church, and all of you to help me on this journey. Thank you.

 

[2siblingsALS]

I haven't had any testing like you mentioned. Maybe when I go to the specialist at the Univ. of So. Florida.
Another EMG on Thursday. The neurologist wants to try to "capture" the muscle twitching. He told me that I have a "weird presentation".
Leave it to me to have the weird one! Why be normal?!
I am doing better with accepting my diagnosis. No more roller coaster emotions and meltdowns. Now it is a low grade depression. I can talk about it matter-of-factly.
Have you heard of Caring Bridge organization.? I have opened a free account there. It is a great way to journal so that people can visit the site and read what is going on. All they have to do is go on the Caring Bridge website, slash visit slash the person's name. In my case it is Sheila Stunkard.

 

[GregK]

> It is a great way to journal so that people can visit the site and read what is going on

Another handy site allows you to track your progress, medications, & etc., and to see how various 'treatments' (e.g. Diana Protocol) are working for others. It's called patients like me.

 

[MaxEidswick]

Sheila, make sure you see a proper ALS doc ... if not Appel, , then Amy in Willowbrook

 

[Music67]

Hello 2siblingALS from Richard:

I, too, am sorry that you find yourself here.

I read your comment about the twitching bothering you and I just want to recommend a couple of things that might help you with this.

1) Reposition your legs. It helps me to minimize fasciculations by either curling my legs while laying down or sitting up instead. Also, if you are in bed it might also help to lay on your side. I find this works better both in bed and on the couch to slow down the activity. Its only a theory but being in positions where the twitching picks up may be caused by that position causing pressure on our spine.

2) I also find that applying cocoanut oil to the affected areas also slows down activity. I know we are all different but one of these suggestions just might work for you.

Keep in touch!

 

[2siblingsALS]

This evening I received an automated call from the University of So. Florida. I have an appointment with a Dr. Vu at 2 p.m. this Thursday (11/13). I couldn't write down all of the information. My right hand isn't good at the best of time,

Tomorrow I will call and get the information that I need.

This is it. It makes it official.