How?

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Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
How do yall cope? I'm miserable, and still have a ways to go...I don't tell my family how I feel. Having them all stressed out won't help. I am so tired!
 
Phil, Can you still do any of the things you enjoyed before? I understand you really like being outdoors. Can you still drive? I used a golf cart to get around for quite a while, and as it's electric, very silent. Cheap, also--bought used. I hope you can share what you need to with family--even to ask for help if needed, to do your activities outdoors. Finding new ways to continue helps so much.

Did you ever get the stairs fixed with the chair lift?
 
Sorry, Phil! Wish I could give you an answer! Sending you a virtual BEAR HUG!
 
Abbas, I can still get around barely. Its the bulbar crap that I'm tired of dealing with.
 
don't think by not saying how you feel , we cant tell i know my son well he keeping his chin up keeps trying to do everything as normal as possible and keeping that smile on , only i can see with my eye's and feel with my heart ... we know , we dont talk about the feelings so he cries inside and i go home and cry
 
You need to go shopping with my husband, Phil! LOL The people at Best Buy in Snellville RUN when they see him coming! I'm not kidding! He doesn't give up and doesn't care if they can understand him or not! He says it's their fault and they should try harder!

If you want to, I will hook y'all up and take you to Sam's in Athens! That'd be fun!

I'm serious! It would be a great adventure!
 
I have my faith Joel, but I also have my pride. You have children that can help your drive. I don't. I'm just a burden on my 76 year old parents that I should be taking care of. It is going to be more than they can handle.
 
I have my faith Joel, but I also have my pride. You have children that can help your drive. I don't. I'm just a burden on my 76 year old parents that I should be taking care of. It is going to be more than they can handle.

a child no matter how old is never a burden , it maybe just what your parents need to keep going , it may be hard but , never a burden at least to them
 
Phil when it involves family, even though there are struggles and hardships, I think the love for one another is what changes the definition of burden. It might be very difficult for your parents, but you are their beloved son. Can you drum up a volunteer from a church group or ALS Assoc. to get you out and drive you around? I am so sorry about all the "bulbar crap".
Laurel
 
Phil, boy do I know what you mean about the bulbar crap! I deal with it but it so controls what I can do, yesterday I went to go outside and go for a walk (well actually a roll, what do you call a walk in a power chair anyway?) and only got to the end of the lane before I had to go back to my room and flush and suction for a half an hour and after that I was too tired to go anywhere. So it isn't just a matter of having wheels (which I do appreciate) it is the feeling of worry of being away from where I am comfortable in being able to clear my throat.

The not eating or drinking is so hard especially when food and drink is everywhere, I mean everyone but me eats! And I don't care what I put into my tube, formula, or real food pureed, whatever, it is still tasteless and boring. And the not talking is no fun either.

I guess I am not really helping to cheer you up or giving you any words of wisdom but please know that you are not alone in this. Misery loves company so here I am buddy.

I sure wish we could go out and find a big whitetail buck or just sit around a campfire and swap hunting stories. Keep on fighting, my friend, us bulbarians need each other.

Barry
 
Phil

I'm asking the same questions. I was diagnosed with ALS 10/01/2010 after going thru mutiple test to rule out myasthenia gravis which I thought was bad but would much prefer it over ALS1 So far my family has helped me over the shock. Now I'm going thru th SS office for disability and Medicare as I have no insurance. I guess my best way of coping is I am striving to live long enough to draw my ex-husbands SS! Keep as positive of a attitude as possible and know that prayers are with you. Mine has effected the way I talk,and walk. The muscles in my throat are gone and my left leg is weak, but I still get up and try to go through my day. Granted I'm just starting but I am very independant person and having to accept help is killing me.
Hang in there as Barry saod we are all in this together.
 
I am sad to say my children no longer help in any way. The responsibility of my care rests on my wife and a couple of caregivers. I can no longer eat, talk or move yet nothing has changed in my ability to enjoy each day and love everyone of you on this forum.
Peace to all.
 
joel, it is the love of your wonderful wife that is (not including your faithn of course) the strong basis of your ability to continue so positively<; you have got over most of the hurdles with power points
PHil, I find pleasure where I can as we all do but it cannot take away the terrible inability to communicate, to share a meal, to SHARE.......Like barry and others I know SO well your feelings. I find it so so hard to know my family does not love me enough to make a few sacrifices. We learn a lot from ALS. But where can we take this knowledge?
I send love to you all and know for a fact that it is LOVE that matters. Those who have it close at first hand are SO lucky
 
Hi Phil I read your post to my husband and he wanted me to write this to you:

Phi,l even though I don't have the bulbar issues I have my own issues as does everyone else on this forum. But I fight on in the hope of a cure maybe one day and the love of my wife is what keeps me fighting. Hopefully alot of us will be around when and if a cure is found. Don't let this bloody disease beat you fight it all the way as hard as you can. It is alot easier to say pick yourself up out of the doeldrums than it is to do but hopefully you have loved ones around you that will help and support you like I do. Best wishes, I hope tomorrow is a brighter day than today for you

Shane and Chris
 
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