I Can't Help But Feel This Way

[wewillbeatthis]

:shock:
Ok so is this a good thing or a bad thing. My dad's Dr. called and indicated that at this time he feels that my dad is at the stage where he can go to the clinic every three months or so... I am in schock cause I feel like does this mean that he is getting worse or better and how would they know? He has not been back to the doc. since July...

They indicated that they have speech terapists, occp. thereapists, physical therapists, and then the ALS doctors.. Oh and yes the social workers... I am a bit scared and for some reason it feels like they feel dad is in need of more... Dad's attitude is that this is what it is and he is strong is going to beat this and that is what keeps him going and now he is going to see people in other stages and this is going to make him feel worse.... Does anyone know what I mean...

This is the thing are there really many people out there that have had this for 10, 15,20, years or are there much, much more at these clinics that have had it for 2,3,5, and not doing well at all?

I'm scared family.... I just want so much for dad to be ok.... WEWILLBEATTHIS is really hurting right now and I don't feel strong enough to help myself let alone go to an appointment like this with my dad... Any advise?

Is this a good thing or a bad thing :?:

 

[Granny]

Dear Wewillbeatthis,
I don't know if this is a good thing or a bad thing...but it is the way things are with this disease. I can feel your fear and your father's determination to beat this THING. I have gone through the same feelings as your Dad when the chance came to go to the clinic regularly. I did not want to face others who were worse off than me, I did not need (or want to need) all those therapists, etc.
But, after the first visit, I felt so much more comfortable. The doctor I have is super and although she does not sugarcoat anything, manages to make me feel better. I only went to one clinic that other PALS were there, but it was good to be part of it. Everyone helped everyone else, we were able to laugh with each other, become friends.
I am not very good at describing my emotions, but I just wanted to know that the experience of meeting the people who can help me - hopefully away down the road, and meeting fellow PALS was positive for me.
They also want to get you involved early, before you need these things, so that is good.
I remember when the local speech therapist mentioned to my husband about me using a whiteboard down the road to help me communicate I was so upset, I was never going to use one of those things, who did she think she was,,,,I was crying for an hour. Now, a year later I am lost without my whiteboard, never leave home without it, and it is a wonderful tool for me. We have to take things one step at a time, it is so hard to think that we are losing control.
I have just rambled here, don't know if it is of any help. I will pray for you and your Dad.
Wish I had the gift of expression that Al and TBear and others have.
Leah

 

[Al]

Thanks for that little vote of confidence Leah. TBear and I are just better at playing silly arse than the rest of you. You speak from the heart and that is what counts. I too felt better at the clinic even though there were people worse off than me. It is a bit disturbing the first time you see someone imobile in a power chair. "There but for the grace of God go I " goes through your mind. You get over it. The clinic like this forum can be a positive experience. New faces and new friends. A chance to compare your symptoms with someone that has the same thing.
People will say I know how you feel because I had so and so disease. They don't because it is not the same.
I for one would say that it is bad to have to go to the clinic because of having ALS but if you look at in the proper prospective the clinic can be a good experience. Have to go. A fellow ALS patient that goes to my clinic is taking me out for Thai food. Catch you later. Al.

 

[TBear]

To our friendly N'Yorker:
I'm not sure if it's a bad thing for your dad to be in the clinic every three months or not... we started out that way... right from the beginning. It will, however, allow the "team" to assess his condition and help with stuff that he might need from time to time. As Leah said, it also becomes a comfortable place... despite the reason to be there. I think my wife came to enjoy the interaction with people other than the ones she saw every day. Your dad may come to enjoy it too.
Leah... Granny... I'm sure with a little bit of coaching you could be a silly arse just like Al and me... but I'm sure you'd be a much better looking one!

CHeers

T.

 

[A Daughters Love]

Hi Jen,
Some days I can handle this horrible disease and other days I just want to pretend it's not happening. Today Is a really good example of how I am going to face the reality of the progression of this disease with my mother, when we watch ER tonight. I am scared to death as we don't like to talk about what could be. But this is going to slap us in the face with it. Sometimes when we are faced with things we don't really want to deal with, but are forced to, some of the fear and anxiety goes away and we start to learn to accept and really deal with it. My mother had an occ therapist to the house this weak giving us ideas of more things she could use around the house to make life easier for her. Mom was a bit hesitant but realized she has to take all the help she can get. I know how hard this is to see your parent go through this, but do everything you can for your Dad, it will make you feel better, and make sure you go the app. with him. I find when I go with Mom I feel better and if I have questions the Dr. are more than happy to answer them. Take care ,I am praying for you, as I know you are for us.

God grant you peace Jen.

Don't tell God how big your storm is, tell the storm how big your God is!

 

[wewillbeatthis]

hank you for your response Tbear, A, Granny, and Michele

Today was a ruff day for me... I just spent most of the eve crying in my room. I am not really 100% why I am crying or why I am even so upset about the appointment in March.

I do agree that everything happens for a reason. Perhaps dad is going to meet some friends that he is in need of that he can talk to about this disease. He is going to see that everyone has good, bad, and just ok days with this disease just as any other disease. See what makes this whole thing that much worse is that my parents are divorce so it is hard for my dad to be scared with his daughter and not his wife.... Soon dad will be living with us not cause he needs too cause he is very independent but because we do believe that being around people all the time will help him... You know that whole mind over matter deal....

Well it has been a long night and I am off to bed....

U are each in my prayers and I know that a cure is around the corner....

WEWILLBEATTHIS