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Jun 12, 2007

Hi Frizzel and everyone else too. :) Thanks for checking on me and T. We are doing OK today. Since the last post, we have come to accept that it is looking like T will have to use a wheelchair soon. At least for things that require a lot of walking. She is really hesitant to use one because she just wants to keep walking as long as she can, even if it is slowly, because she wants to work her muscles. She is kind of excited about getting one of those walkers that have the little basket to hold things/chair when you're tired to sit on. I think she is going to try to use one of those before she gives in to a wheelchair. As usual we try to keep it light and joke as much as we can, but we have been crying frequently lately. Funny thing is that after a good cry, we feel some relief. She was worried that if she used a wheelchair that I might be ashamed of her... what a crazy idea! There's no way I'll let that change anything about the way I feel (totally, passionately, crazy in love :D).

Another note for anyone interested in trying something they haven't tried before... T has been taking a medication that has supposedly helped MS patients and was showing some "promise" of improving the condition of ALS patients. She was told about this by a good friend at work whose wife was really suffering with MS. It is called Naltrexone, and it was already FDA approved in a 50 mg dose a while ago. We did ask her doctor about it and he seemed a little resistant, as if it probably won't do much... something about improving nerve conduction slightly. Well, we really wanted to give it a shot anyways and we did. The "therapy" is to take low-dose naltrexone (only 5mg) every night at bedtime. It is also important that it is a "quick-release" form. The doctor would have to monitor your liver, but the chance that it would be affected is pretty small since it is only 5mg. T had been using it for a month and one of the side effects was not sleeping very much at all for the first week. However, she did notice an increase in her energy level and seemed to feel a bit stronger. Recently, she forgot to call in a refill, and had to go without it for 4 days (we get it from a pharmacy in Boca Raton by mail). Well, she definitely felt the difference in her energy level when she didn't have it (big time). Now she has taken it for a couple days again and is feeling like she has more energy. The other cool thing is that is costs her less than $25.00 for one month supply. The LDN has to be made at a compounding pharmacy and we are using one of the reccomended ones (Skip's Pharmacy in Boca Raton, FL). And yes, a perscription is required. Just make sure the doctor gives you the right dose (5mg) and specifies "quick-release" form. I didn't want to say anything about this before until T had time to see if it would really do anything, which it does seem to be helping her. Let me know if any of you try it, I'd be interested in seeing if someone else has similar results.

God Bless,

That's really interesting. Where I work, Naltrexone is used to treat alcohol cravings for people in early recovery.

Hi Liz, yes that's one of the things I guess it was originally used for the most. I think it makes people sick if they are taking it and then they drink alcohol. I'm not an expert on it by any means, but it says that it blocks opiod receptors... I can't remember all of the science behind it... but it seems to be helping T and not hurting, so she's going to continue taking it. I just thought I would share it in case anyone else has ever tried it before or would like to find out more about it. And the dose T takes is 4.5 mg, to be technically correct. Good Luck and God Bless.

Hi T and P

I had never heard of Naltrexone. If it works and your doctor is aware of what you two are doing then by all means, try it.

SOmething suggested by AL when I first started this forum was to pay for the least expensive chairs because insurance may not pay for another one before 5 years AND a lot can change in 5 years.

So, I was using a cane, went to a walker, manual chair and now an four wheel heavey duty, big oel batteries electric scooter. (got it new at a garage sale) We've put out the monies since we are waiting for the big chair down the road. I like the scooter because when I'm home I waddle about but when I go out I have the energy to enjoy the journey rather than trying to 'get'there. Also now my leg arm is getting weak along with my wrist. My fingers are curling on my left hand so to grip has become near impossible.

Is T in physical therapy to teach her and you to stretch and move her? That may be something to talk with her doctor about.

Tell T to listen to her body. Captain Al suggested 10 hours of sleep a night. That has helped! A good nights sleep is sooooo helpful.

I've noticed friends and family rallying beside us. Allow yourselves to accept support. I still cook so, 'Will cook for support!' ha!

All the best and God be with both of you during your climb and flight.

New as a participant

Hello All,

My name is Linda from Dallas and I am a CALS. My mom was diagnosed 1 year ago with Bulbar ALS. We have seen a seemingly healthy 76 year old women lose 60 pounds, her ability to speak, eat and now can barely walk ( 3 falls in the past 3 weeks). She is on her 2nd peg tube and has had a pacemaker replaced. A busy 12 months. My dad is 80 with the spirit and strength of a 60 year old. They are my heros. My mom has never questioned why, felt sorry for herself or cried (I've done enough of that for her. lol) I have spent endless hours researching this disease that is a thief and have much appreciated all of the information I have found from you. I am hoping I too can help someone along the way.
Thanks Sass. Welcome but sorry you have to be here. Helping each other is what we do here.
Pam, I posted a message in the forums a few months ago about Low Dose Naltrexone wondering if anyone had had any experience with it. It seemed no one really had any experience with it for ALS as no one really responded.

However, I knew about it because ( I know this will sound strange) we gave it to our German Shepherd (since passed) when she developed a degenerative disease called degenerative myelopathy. It really did seem to plateau her symptoms for a few months but then the disease kept on encroaching.

Because of its low cost and possible helpful effects, it would be worth a go - I suggested it to my parents (my mom has bulbar onset ALS, diagnosed Feb 07), but they didn't seem too interested.

Good luck with it if you all decide to try it.

God bless,
arm pain

I have developed a new problem.whenever I stretch my arms out I get the worse pain in my forearm like someone punch me real hard It subsides quickly thank god because it is sobad. I also lost range of motion in my arms I cant get them to go up without pain in the joint of my shoulder and I know we have to keep moving our joints, I am going to a chiropractor for electric stim hoping that will help. Does anyone have that Pat
Hi Frizzel.... thanks for the hint about the chair... I will definitely research what the insurance company will provide before trying to get them to pay for it then. :) I really wish our health care system was better. T has to keep working as long as she can unfortunately in order to keep her insurance coverage. Then it will be COBRA time... is it true that a lot of people lose everything because of all the medical bills when it comes to ALS? T can't qualify for disability yet either because she hasn't worked in the US for 4 years yet (she still has one more year to go) and even then it isn't very much. (She is from Brazil.) It is really sad that out of all the healthy people who pay for health insurance and all the money made from those payments ... I really wish some of the profit could be given to people who desperately need it. The cost of care alone is out of control. I guess I'm starting to sound like a socialist now... there's just got to be a better way. I also wish that more medical companies would search for a cure for ALS, but not enough people have it, so a profit can't be made. The almighty dollar. Of course most people don't think about these kinds of things until they are the ones who are sick and almost broke. I was one of them. God help us all.
Pam (I'm in a complaining mood this morning... sorry!)
If you need to complain

Hey Pam,

If you need to complain, you're at the right place. Man, yesterday I had a huge oel pitty party and then told myself at the end of the day, Party's's time to put my big girl pants on. THe reality of this illness can sometimes get me down some. THen it's like I know I have to keep going. I also work full time.

So complaining is a way of venting how we feel. Let it out so it doesn't soak back into cmuddy the flow of water.

Write any time. We are good listeners.

temper tantrum

I suck! I lost it last night. OK, it was only a thirty-second tantrum that consisted of slamming a door and banging the closet and screaming out a couple curse words, but still I really wanted to shoot myself afterwards because T thought I was mad at her. I was mad at God and life in general, not her. And I said something that came out of my mouth sounding COMPLETELY WRONG. It is always right after you complete a sentence when you realize how idiotic it was. This week is the week that I graduate IF I can get my Senior Design project built and working... and that is a BIG IF. So I haven't been sleeping much at all (4 hrs a night on the average) and I haven't been able to care for T the way I usually do. Thank God we have good friends that have been helping a lot. Thank God. Did I say Thank God? My complaining about a lack of sleep seems really silly to do since a lot of you probably consider 4 hours of straight sleep to be a true gift. I don't really mind not having it, but the lack of it makes me cranky and stupid. T really needed me last night to be there for her, and I wasn't ... I was more concerned about her being there for me this week. Deep down of course that is not really true, but that is EXACTLY the way that it came out. Another thing about T is that when she gets mad about something, she is the kind of person who will let it simmer for 2 weeks until it gets really rotten. So I really hate to get on her bad side. I just really have a gift for saying things in a way that comes across sounding so insensitive. Anyone else have this gift? I'm in the dog house. :(

Pam -

Is it possible that T also feels the need to be there for you, for example, supporting your efforts as you approach graduation?

Pam- i also have that great "gift" for putting my foot in my mouth. :) It's one of the reasons I do better on a board such as this-there is time to review before you press "send." You shuold see what comes out of my mouth in real time!:-D

:-D Hope it takes less than 2 weeks for you and T to patch things up. Just what you need right now is more stress! BTW, the project sounds interesting. Best of luck. Cindy
Just some thoughts

You may want to ask someone to come be with Tammy until your project is completed. THis is VERY important for you to complete and yes, like Liz shared she may be frustrated she can't help. Still, you need to have the space to go on with what your dreams are for you, too. My husband is going back to school for his masters and I am encouraging it. I also am coming to terms with the reality that others, not just my husband will help with the things I need help with. Do I like that? It's not as is more realistic. If he is going to be realistic I have a disease that is killing me, I need to relax into the reality that when I'm gone, he can keep moving on with what he loves to do

It's a week. Be honest with what you need to do to finish the project and then what do you think of having something planned to enjoy together after the project.

We say to take care of communicating the little stuff before it boils and explodes all over the place. It's each of our responsability to let the other know what we can expect from each other.
Believe it or not LOL I have shot my mouth off quite a few times over the years and a simple sorry and a few flowers works wonders. Don't know if T is a flower prson but just a bunch of carnations or whatever seems to help smooth things over here.
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