ALS Clinic Today

[Nuts]

Matt just made the OT cry. His hand strength was 45 last visit. He told her it would be about 5 today, and I don't think she expected him to be right. The meter didn't even move. I found myself comforting this wonderful woman who has been cheering for him for 3 years now. She was shocked. More to come...it's almost 5:30 and we have more to do....

 

[Narrowminded]

Becky I'm sorry it was a rough day at clinic.

Hugs,

Sue

 

[KateEmerson]

Thinking of you and Matt, Kate

 

[affected]

All I can say is that it's better for one of them to cry as usually it's us crying when tests are done and results reported :neutral::???:

Hang in there Becky and Mat xxx

 

[Nuts]

Thanks ladies. This was probably the toughest yet. We had discussions about the threshold for the feeding tube (which is coming up) and specifics of vents and trachs and end of life options. It was emotional. Prior to this everything has remained light and somewhat entertaining, but realities are catching up with my honey.

As more than one person here has said, things are getting real.

On a positive note, I just love the folks at Duke. I cannot imagine what they go through, seeing constant decline, but they are ever helpful and always have some suggestions or advice to deal with the next stage.

We got home at 8:30. He's tucked into bed and fed and the dog is in and I'm going to finish a nice glass of port and unwind.

Becky

 

[Jrzygrl]

Sorry for the rough day.

I remember when we first started going to the ALS Clinic. I kept thinking to myself - why do we have to see all these people? He's just having trouble with the footdrop. Fast forward a year, and we actually switched clinics, because the first had services cut that we now consider essential. OT especially has become huge! He's in a power wheelchair. He can only walk a few feet with the aid of a walker. He also has very limited use of his arms/hands. Uses a trilogy at night. I tell people - for us 2016 was absolutely brutal.

We used to go out to eat and get a drink afterwards. Now it is all we can do to drag ourselves home and maybe order a pizza. He's physically exhausted, and I'm emotionally shot.

I have come to dread clinic. As you say, they are all wonderful people. I also don't know how they deal with it on a constant basis with just about everyone they see.


I wish for you a better day tomorrow! Hang in there.

 

[swalker]

Becky,

I am so sorry to read your report.

We don't do a clinic, as I have assembled a team of medical professionals I am very comfortable with. But, I do remember getting the hand strength test and being distressed at the results.

Likewise, I remember the first time a doctor asked me about our financial situation and talked to us about preparing for the decisions regarding feeding tube, trach, etc.

Sobering, but necessary discussions.

It is a blessing to have medical professionals care so much about you and Matt.

Yet, I know how tough it must have been for both of you. I will keep you in my prayers.

Steve

 

[scaredwifetx]

Becky, i am very sorry that clinic was so rough. Warm hugs coming your way.

 

[Erika]

My mom's clinic day is coming up next week....so thankful with her team but man, what a day that is! Thinking of you and hoping you'll both have a restful night.
-Erika

 

[lgelb]

It gets real too soon for everyone, Becky -- sip away. Still, in some ways you can only go up from there, till the end. It's only those who never ask/answer hard questions and deny the real for too long that I think become truly trapped.

Best,
Laurie

 

[4tloml]

Thinking of you, Becky, after the rough day you had. Hope you and Matt are both getting some good rest tonight. Wish I had some wise or comforting words, but all I can say is that ALS really, truly sucks. I am so sorry.

 

[soonerwife]

So sorry Becky! If only ALS wasn't real. Hugs!

 

[Lkaibel]

Becky sorry to hear about your day. Progression of s so wretched, and it must be all the moreso where you are. Hugs.

 

[sunandsea]

Becky, Sorry clinic was so difficult. Hoping today was a better day for both of you.

 

[adrivtham]

Becky , I am sorry...at the beginning I was excited to see so many specialist, I was kind of thinking that this would help and maybe it did but not all I was hoping for.
My husband gets very sick when we attend the clinic. I don't know if we are going to do this anymore.
Hugs from another soul in pain