Clinic Visit Tom...feeling nervous.

[Thomas933]

Tomorrow we are headed to our 2nd clinic visit -- I am sad and on edge today. Is it because we are facing clinical tomorrow?

It's so hard to try and have a "normal" day . We have been living with this dx for almost 2 mos. I think the shock is finally gone - perhaps reality is just setting in now.

Not sure why I am so out of sorts. I'm thinking it's the looming clinic visit and the possibility of upsetting news tomorrow.

Is is normal to be so nervous for clinical visit?

 

[KarenNWendyn]

Yes.... but I try to look at it as an opportunity to ask questions, maybe learn something, and get help in the form of adaptive aids, medication for symptoms, and other information.

We know ALS is progressive, and only gets worse over time. I think if you go in expecting this, it may be less disappointing. It’s sad that we have to set such a low bar, but there it is.

I’ll be thinking of you tomorrow.

I have my clinic this week too.

 

[Nikki J]

Yes I think so. I love mgh as you know. However I am as you upset and on edge for a week or so before and sometimes after though not always. For me the issue is that I want to go prepared to make the most of the visit. So I think about things a lot more than normal. Things I try to ignore I examine closely because I want to be sure I say what they need to know and ask all my questions.

If you are worried that they might tell you something bad it makes it that much worse.

I hope the visit is a positive one

 

[Thomas933]

Karyn - I will be thinking of you, too. Hope it goes smoothly.

 

[Thomas933]

Nikki - This makes sense, t I want to go prepared to make the most of the visit. So I think about things a lot more than normal.

This is a good point -- thank you.

 

[affected]

Definitely so normal, whether you are the CALS or PALS.

It always feels a bit like we are handing them the power to make more horrible pronouncements over our lives. The more you can see it as a way to get what you want (equipment, strategies, meds etc), the better you can combat this. But it's still really a feeling thing, so it grabs you and you have to kind of hold the mane and ride it through with your teeth gritted. Give a wild scream if it helps

 

[Jrzygrl]

Clinic visits can be overwhelming. It's always a long day for us.

One thing I have found helpful is writing up a list of questions/concerns that either I or DH have. If I have time, I also email the list to all the clinic participants (Neuro, PT, OT, dietician, etc). All of them seem happy to have the list ahead of time and have sometimes answered prior to the clinic. It also helps us remember things that we need addressed.

Take a deep breath. Hugs.

 

[Thomas933]

Update: All went well yesterday. Other than the fact that he still has ALS, the visit was positive. No major changes and MGH is fantastic.

Thanks for the support -- hope everyone is doing okay today.

 

[affected]

great stuff sometimes we use up a lot of energy future worrying!