How?

[TedH5]

Phil I am sorry that you are struggling. Certainly I do not know your family situation but I imagine they would want you to share with them your feelings. I imagine that they want to be there for you. The way I try to deal with it personally is I try not to worry about what the future is going to hold and bring. When I do I am certainly scared and not looking forward to but on the flip side I have so much to live for today and focus on the positive things in my life that make me happy. Most of which revolve around relationships.

Please focus on the positive things in your life and do not allow yourself to focus on the negatives but rather all the reasons to be happy to be alive today! If you need to vent feel free to reach out to me!

Stay strong and keep the faith - Ted

 

[Lavender Lady]

Phil, How? that is the big question for us all. I have arm onset but my speech is definately being affected already. It is scary thinking that one day i will not be able to eat, drink or talk. This disease is truly a day at a time because I cannot hardly think beyond that or I will crumble. I have to constantly get refocused and not to dwell in negative thoughts. I pray a lot and lean on God for strength. I hope you have a blessed day.

Rox

 

[Miss]

My husband's started in his left hand, but bulbar issues are now in full swing. He was told by the GI yesterday that thin liquids will probably be cut out after his swallow test next week. Already, he can not be understood on the phone. We are taking things one day at a time. I'm not going to pretend it isn't hard. It is. There are alot of anger issues to deal with as well as the devastating effects of ALS. sometimes, it is more than we can stand. Some days seem "normal". One day at a time.

 

[RoadKill]

Love?

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

05-03-2010, 05:24 AM
irismarie
Join Date: 2009
City: valeilles
State: tarn et garonne
Country: FR
Diagnosed: 05/2010
Posts: 1,469
irismarie is an unknown quantity at this point

 

[Phil M]

I used to be pretty good at ignoring this disease, but my fasics are bad now, from head to toe. I feel like a Mexican jumping bean! This is just not a good disease for me. I'm a wilderness man. I am used to exploring miles of woods. Been this way since a little kid. Its my antidepressant. I'm just not meant to be locked up. Its like I can feel my life force slipping away. Hopefully this is just a spell. I am asking for Gods help!

 

[pops66now]

Hello Phil, mine started in my right hand and arm. Then my neck and throat, my wife has a hard time understanding me at times.
now I have lost most of the use in my left arm and hand. When I get depressed I think of the good times, like
playing pool with my son or water skiing with my children. I try to keep the happy times alive in my mind.
Thank GOD ALS doesn't effect the mind.
GOD Bless Wayne

 

[abbas child]

Phil, did you mostly go out alone or with buddies, when you enjoyed the wilderness? Laurel suggested having friends drive you places. I wonder if you have friends around who'd take you with them to hunt. I guess I'm really suggesting that if you used to do things together, you send them a note asking if they'd be up for picking you up to take with them.

When my legs were on their way out, Phil kept a short plastic step behind the cab of his pickup. I was able to step up on that, then into the truck. Ramps are made for arthritic dogs, so why not a ramp for you if you need it? I have the picture in my head of a piece of 1 by 9 (or wider) from the driveway to the truck's doorway. You know it doesn't have to be fancy. A lot of times... maybe most times, friends would be delighted to help, but they feel clueless about what they could do. I hope you have some you can reach out to.

If you only enjoy being alone, I'm unable to think of anything... But you probably know by now I'll keep thinking, Phil. We're all in this together.

 

[LizT]

Phil- Its breaking my heart reading your posts and knowing you are feeling so down right now. My PALS was a great outdoorsmen too. He was ALWAYS hunting and fishing. I know he really misses it alot too. Now, he watches all the hunting and fishing shows that he can find. i know its not the same, not even close- but he has chosen to live on a vent, and has to adapt the best way he can. If you would like, I could ask him how he deals with it all or something to that effect. Just let me know what you'd like me to ask him.
You are entitled to have down days. heck, even weeks or months. So dont beat yourself up for feeling this way. youve earned the right to complain. i am hoping that if you dont have much support where you are, that we can help provide it here.
Keep posting friend. And take care.

 

[John1]

Phil,

I too spent as much time outdoors as I could. Canoeing, kayaking, bushwacking, cross-country skiing, birding - you get the picture. I can no longer walk but still get out a lot, every day in fact. You need two vital pieces of equipment; a power wheelchair or large 4-wheel scooter and a wheelchair accessible van. Used vans are reasonably priced if you don't mind an old one and are patient while looking. Then you are ready to explore. Most city, state and national parks have abundant accessible trails. You'll have to curb your itchy trigger finger though .

 

[Phil M]

I did a lot of yakking too John. Believe it or not, but we have some beautiful rivers here in Ga. I will look for some pics. I would get out more if it wasn't such a hassle here with all the stairs. I hate them!