Here I am... (drug question)

[lilblackhorse]

long story short, thought this was a work injury with foot drop after a fall back in Feb of last year. Leg continued to be weak but manageable. FF to a few months ago, feeling weaker and having twitches. Diagnosed with 2nd opinion just recently.

I feel like this is going very fast--I just told my kids, who are in their early 20's. I am single, so that's scary...oh, and 53. Going to a specialist out of town in July for the prognosis. Second doctor, who was recommended to me through the local ALS group here is very nice, he prescribed Riluzole for me.

I started taking it on Monday, and have to say I called him yesterday (Friday) to say I'm over it. I felt like every day I lost more strength and it made me dizzy. My legs went out on me last week at my son's graduation, which was an eye opener for how fast this seems to be moving. I walk with a cane, but I think the embarrassment of using a walker is in my near future. I can't get off the floor now if I get down, or fall down.

I have been using CBD oil for the last few weeks, and weed seems to help me sleep, assisting with the twitches and sore muscles.

I don't know what I'm posting...just rambling. Telling my kids was the shittiest thing I've ever had to do--makes me cry every time I think of it. We are going on my "adult make a wish" trip tomorrow to the beach, so we can spend time together. I really feel that this is going to rob me of my mobility in the next few months the way it's moving. I'm pragmatic, but hopeful, but it seems I loose function daily. We are going to talk about death with dignity on vacation, as that's my wish. I know what I will live with, and honestly my vision of me trapped in a body that won't move isn't for me. This is my only solace in this disease, knowing I live where I can make my choice as to when I'm done.

Thank you for letting me post here....I will be thinking of you all as I sit on a beach in the Pacific for the next ten days

 

[azgirl]

So sorry you have to join us. I agree that telling the kids was the worst thing I've had to do, mine are also in their 20s. But we've gone on several family trips since diagnosis and made some great new memories. Enjoy your precious time together on the beach!

Protect yourself from falls, whatever that takes!

 

[cheerleader]

So glad you are living in the now and making good memories. Welcome and know you will get much support, caring and good information here from people who understand. Donna

 

[LifeEnthusiast]

Sorry you to have to welcome you here. This forum has been a psychological saviour to me. Wonderful people here.

 

[Green Queen]

Welcome.
Enjoy your trip to the beach with your kids.
God bless, Janelle x

 

[GregK]

Add some THC to your CBD. It helps too.

 

[anderkling]

Welcome to this forum. We are united by a common enemy, but also by caring, sharing and positive living. We are a close-knit bunch. I know how hard it is to tell your kids. Mine are teens. If I may suggest one thing to you, it would be to give rilozule a good chance. It can slow progression, which I can attest to. I had unpleasant side effects for about 2 months, but now none. I so understand how scary the loss of mobility is, and the embarrassment of using a cane, a walker, and in my case now, a wheelchair. But in time you grow accumstomed to it and it isn't so bad. Life still has joy, I have found. I hope you have a memorable time at the beach.
- Charlene

 

[MaxEidswick]

>I'm pragmatic, but hopeful

like all the others, sorry to meet you here but welcome!

The next months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick

people, especially w/ respiratory problems.


> I do know it is healthier to be thankful for what still works than to resent what doesn't

(easier said than done )

also remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to

friends and family, too.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have

found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

there's always someone who's got it worse...

find good thoughts to shift when the bad thoughts slide in ...

Max

 

[Jeanau]

I too had to stop taking riluzole. The side effects were simply too hard to adjust to. I'm living life the best way I can as I adjust to the daily changes in my body.

 

[tripete]

I too had to stop taking riluzole. The side effects were simply too hard to adjust to. I'm living life the best way I can as I adjust to the daily changes in my body.

Same here, just wasn't worth it

 

[bear1973]

welcome to you. I'm new on here too and yes....this disease really really sucks. I can say to you as well, that I too am single as of this year, so I know what that is like. I learned not that long ago though there are many in-home supports that are available. Try to stay in today and try to look at the positives....there aren't many with this, although you can find them. God bless.

 

[MaxEidswick]

>I too am single as of this year, so I know what that is like.

I don't know how you do it! hats off to you and hang in there

 

[mpnatx]

I too had to stop taking riluzole. The side effects were simply too hard to adjust to. I'm living life the best way I can as I adjust to the daily changes in my body.

I stopped also. Gave it try several times, just made me nauseous, tired and loss of appetite.