This disease is straight from hell

[BlueandGold]

First, it ravages your body from head to toe robbing you of any dignity you might have had. Then it builds a wall between you and your loved ones. The only feelings they have left is that they no longer have a life outside als and wonder "how long will this go on". The love dicipates and resentment takes over. Sure there is love, but not for the present. Only for the times we we used to be a person". I've had enough.

Vince

 

[Nuts]

Vince, my heart is breaking. Today was a tough one for us, and I just wanted to cry. Now the tears are flowing. I hate this effing disease. Hate, hate, hate. I'm so sorry. I wish I could hug you, my friend.
Much love,
Becky

 

[chally]

AGREED! New bad stuff coming at us all the time. Your in my thoughts Vince.

Love ya
Chally

 

[frankb]

Yes, Vince, many PALS are unfortunately in the same tight spot. As the disease progresses more and more requirements are placed on our caregivers, both physically and mentally. An acquaintance told me that as PALS require increasing medical and emotional support so do the CALS since they have such an ever-increasing load to deal with. Hang in there old friend and search for those few bright lights that we can find during this unwanted journey. My thoughts are with you.

 

[Firefighter58]

Hello Vince, so sorry to hear the way you feel, try to stay strong there pal I know it is hard but we are all here together, support you with all our hearts.
Al

 

[Neilswife]

Vince,
Your post made me cry this morning. I am so sorry you are feeling the way you are. My husband passed away from ALS and I was his caregiver so I know very well how cruel ALS is. The one thing I can tell you is I would love to share another day with my husband -- never underestimate how much your presence means to those you love even though they may work hard to care for you. Never stop talking about the love -- it is what gets us through the hard days. I hope you feel surrounded by love today.

 

[codyclan]

Vince,
I am so sorry for what you are experiencing. You are valued and your presence cherished, I am sure of it. I say this because your posts here are so heartfelt and enlightening and you are well loved on this forum. I am certain that you are all that and more in person. Everyone deals with grief in different and, often very surprising, ways. It may be that your loved ones think that building a wall will help them cope with grief and loss. Know that we are all thinking of you and sending our love.
Tracy

 

[Lkaibel]

Vince, I can tell you that although my husband says he is "useless" I love him - today with all my soul and I value his presence every day just as he is.

I'm so sorry this happened to you, and to all of us but please know you are not alone.

 

[KW1234]

Hello Vince, If I could hug you I would. You are right , this disease ravages us. Twice I started to type a response to you but only to drop my phone and lose my edits. I think it helps to focus your energy on anything positive, no matter how trite. This disease attacks your spirit, stay strong and don't let it. It is the one area where we can fight back.

 

[WendyWooG]

Oh Vince

I just can't find the right words sending hugs.

Wendy

 

[mpnatx]

Vince,
I'm with you on that! Sucks. Hope you find some relief.

 

[bigmark1954]

Amen Vince................There is nothing fair about ALS!!!

After we reach a certain point there seems to be only bad and worse days.

Please consider adding or upping your anti-depressants, in hopes of easing your agony.

Some days are unbearable for all of us..........a wise man once said "It is what it is".

 

[KimT]

I'm so sorry, Vince.

People react to loss in so many different ways.

One thing I know is that YOU are loved, both here and at home. Never forget that and don't let your circumstances rob you of knowing what a special man you are.

 

[Manhattanite]

Don't even know what to say except that it's a hell we all share.

 

[Twitcherama]

I'm with you on that, Manhattanite. It is definitely hell. I try to maintain a positive attitude, but lately I've been feeling rather lost. I just keep thinking, "Great, what's next?"

Stay strong, Vince.