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JeffP

Distinguished member
Joined
Jan 8, 2010
Messages
295
Reason
PALS
Diagnosis
08/2009
Country
US
State
MI
City
Iron Mountain
what an awlful disease this is.it tottally robs the life right out of you .itys been around over 100years and still no cure .i was diagnosed aug09 bulbar i talk like a drunk my speech is so bad.now there talking about a voice machine 8500 dollars .and now a peg tube.there needs to be more awareness of this disease is it because they claim its so rare good guestion.it affects the whole family not just the one with the illness but the loved ones watching us slowly or progressively waste away. its hard to stay positive all the time ,its hard to hold back the tears .life is something that shouldnt be takin for granted you never know what tommorrow brins .another survivor fighting the the fight with all you out there on and not on this forum jeffp
 
Jeff, buddy, unless you can't type and need an eye gaze machine there is no reason to spend $8500 for a voice. I have three machines and the two that that I use every day cost me personally under $500 each for the hardware and software. The one that I still have but rarely use is the most expensive, my DynaVox Palmtop3, which cost over $5000 (I was subsidized except for $500).

All I can say is keep on slugging, when are you getting your peg? Wishing you good spirits, I know how hard it is on everyone involved. I try to have a good attitude for not only my well being but for my family and friends too.

Barry
 
jeff...feelin your pain buddy...
 
Jeff,
So sorry you are having a tough time. You are truley such a nice and kind man. Hate this darn disease 1000000000000000000000000000000000000000000 times. I am sorry that you are having a rough day, we are all fighting for you. I am working hard on media exposure, we need it.. Rare my foot....
 
Jeff, hard days come and then they are gone. It is ok to have a bad day..We all do. I guess the trick is to keep picking ourselves up and looking forward.... I tell myself everyday how grateful for my husband and family and friends...I try and say to myself am i wasting time with sad thoughts? Get out my family pictures of events ,great memories shared... Go out and feed my birds, get on the forum ,knit,anything to get my mind turned around and possitive again. Hugs to you today, L
 
to whom it may concern the emotional lability aspect of this disease .for some reason there are those out there that dont understand what im trying to say. ok as a new member of any group as you may say you have leaders and people under them for guidance.i always here about taking this or that medication im going through such and such .there missing my point here it is as a new commer alot of us look up to people that have been here for awhile for some answers and hope ive noticed that the answers i always seem to get as many others is a simple answer.when were talking about feelings one way of expressing help is to reply how you have felt what you hve gone through then maybe suggest looking at medication for some help .to me the new comers are more less getting there feelings met by other new comers.thats just something to look at and remember your beginning dayus and what you were going through
 
Jeff, when we're talking about emotional lability and how it affects us as PALS it is a very personal and individual issue. For me there has been no inappropriate outbursts of either laughing or crying so I have not felt any need for medication. I mean, sure I get depressed about the way my life is going and all of the changes that me and my family are having to adapt to but that is not emotional lability, that is life. I do get more emotional about things than I used to, crying over stupid things on TV or music, laughing at funny things and then not being able to stop because the whooping and snorting sounds that I make when I laugh are just too damn funny.

However, that is just me and as I said it is a very individual issue so if you or anyone else needs medication to deal with EL there are others here that can offer advice.

As far as being and new comer or an old comer, we all have something to offer. I joined this forum a year after my diagnosed and a year and a half after the start of symptoms and I know that I have learned so much since from my friends here, from my clinic staff and on my own. I have no idea if I have addressed your comments but just want to say that there are no simple answers when it comes to ALS.

I hope that you keep on posting and keep on smiling cause we are all here to help each other and I need your help.

Barry
 
Hi barry thank you for responding to my post i do appreciate hearing from you. your response has been the closet to understaning what i am trying to say. i think i am not putting my thoughts out there so others will understand. i am not experiencing el. when i was diagnosed with this disease i was shocked, hurt, scared and a lot of other things all mixed up. that was not el it was normal human feelings. new people come on here expressing those feelings and seeking support and i believe that sharing my initial reaction helps them to understand that they are not alone. i don't see any oldtimers talking about the first thoughts, feeling, emotions they went through. i feel i need to share this with others not only to help myself but to help them. Does that make any sense..please correct me if i am wrong after all i have not been in this boat for very long and maybe i am getting to personal jeffp
 
Jeff, there is no "wrong" and there is no "too personal" either. If any of us here want to share our experiences or feelings then we do. Maybe the old timers (whoever they are cause we are all spring chickens here :razz:) have not been coming forward to relate to new comers how they first felt when they received their diagnosis because while we want to help how many times can you tell the same story. I try to welcome all new members (if I have missed anyone I apologize) even though it can be depressing to realize how many PALS there are out there.

I remember vividly the place, time and how I felt when I was given the news. Like everyone, I was shocked, scared and sad but I because it took so long to diagnose I knew that it was coming. I really had no idea how it was going to affect me despite what I had read, seen and heard. This was a disease that other people got, not me, but now I am those other people. So much has happened and my life has changed so much since then but I know that we can all still relate to anyone has just found out that they or their loved one has this devastating disease.

Keep on helping cause this boat needs bailing!
Barry
 
to all this letter i wrote my apologies go out to all of you.you are all unigue in your own way and even when i first joined the site i was welcomed.sometimes i overanalyze things and blow them out of proportion.im deeply sorry if i affended any body from this forum you all have helped me in one way or another .and for barry,joel,al,and who ever i wrote to again except my apology.this is a wonderful forum and im blessed i was wecmed in thank all of you sincerly jeff pate
 
Jeff, no reason at all to apologize. You certainly haven't offended me at all and I can't imagine how anyone would be offended by what you have said. Keep on keeping on.
Barry
 
Jeff, you have to realize that some of us oldsters are typing with 1 finger or an assistive device. That's not condusive to sharing much other than a few brief sentences. Is there an ALS support group nearby. I found it was easier talking to others in the group.

AL.
 
Sure shows you how this disease treats Limb onset and Bulbar onset PALS differently, at least in the beginning. I come here because I cant talk but I can type, Al on the other hand found it easier talking to others face to face cause it is hard for him to type. We all need to express our feelings, just how we do it differs.

Jeff, I went to your page and read some of your visitor conversations and I still say that there is no reason to be sorry for anything. I am not a person of any particular faith but I believe that we are all here for a reason and for me that reason is to be a good person who will try to help anyone that I can. You and your thoughts and feelings are valuable here and there any time you want to talk to me I am here just let me know. The same goes for anyone here.

Barry
 
Hey, Jeff. Have you read the thread re: Christians here to help? There are some fabulous posts on that thread.

I remember when my husband was diagnosed. It was four years and one month ago. He was stoic the hour and a half ride home from the dr, then promptly walked into the house and told our 13 year old daughter her daddy was dying. I could have killed him. The absolute fear of the sickness, the process of being sick and taking care of him mixed together with the horror of of the cards we'd been dealt knocked us all into a tailspin. What else do you want to know?
 
Hi, Jeff. Sending a big hug and lots of love and understanding. It is a disgusting disease and we are so helpless in so many ways. It is so unfair that having a horrible illness makes one broke financially as well. A friend is doing a collection for among others who know me me to pay for the electric leg rests I shall have to have on my power chair when it arrives. I accept that but I hate it.

But once one is IN a situation we have to live it the best we can. I TRY to look at it as an adventure, a challenge where nearly all the odds are stacked against me and yet I am de termined to beat the Devil. I know I cannot beat death as that is a given - but I shall TRY not to give in to the depression that is forever tugging at my sleeve - except now and then, of course. FIght the good fight!

I just LOVE these lines by Dylan Thomas:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
 
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