Feeling Hopeless

[berniec74]

How do you get out of your own head? I was diagnosed a year ago and no longer walk...now I'm losing my left arm strength and assume my right will be going soon. For the most part I have been positive but I can't seem to shake the anxiety/fear/frustration etc.
I am 50 and single and have moved in with my brother, sister-in-law and nephews. They wanted me here and I have a beautiful room and we built an accessible bathroom...but I can't seem to get past the sadness right now. No matter what I feel like I am a burden.
They both work full-time and help me a lot but as I begin to lose my arm strength I am unable to do for myself things I could do just 4-5 months ago.
You think I would be grateful and happy but I just feel so sad...
I take an anti-depressant and it has helped...also it's winter...blah....
My friend wants me to go with her to Arizona in Feb...I think it would be good to go...

Also - anyone take Rilutek? Anyone else think it's a waste of money?

 

[Barbie]

Bernie,I am not a Pals so I can only humbly say, I think you have the winter time blues. don't feel guilty for feeling sad and not grateful--even on anti depressants everyone has bad days and you are facing much more than most people. A little trip will do you good and help clear your head. go with your friend to Arizona and have some fun. You deserve it and it you should go now while you can still travel easily.

 

[ECpara]

Go on that trip! Travel while you can, it will take your mind off the horribleness of this disease. My husband and I went to Disney World again with our daughter, SIL and grandkids. It brought such happiness. We're planning to go again next year (went a year ago, too). Such a happy place, it really gave him a lift. My husband has been on Rilutek since diagnosis Feb. of 2012. We were told by a PA at Duke that it seems to have a greater affect on Bulbar Onset ALS patients, which he is. So far his progression has been slow, so he stays on it. Luckily his supplemental Blue Cross pretty much pays for it, $12 a month for the generic Rilizole. Praying for peace for you. God bless!

 

[hjlindley]

I am distal onset ALS and slow progression so when I looked at the cost of Rilutek and the side effect lists I turned it down.

 

[FSHolbrook]

By all means go on the trip. I am using Rilutek and although it is expensive I have no idea if it is a waste of money. I think if it allows me a few more days with the ones I love then it is entirely worthwhile.

Rick