clinic intake visit was a little scary

[gooseberry]

Went for the intake visit Monday. Previous 2 neuros, more general practice types, said my pals had limb onset als. At this appointment the specialist, yes Max is right, said it was bulbar onset. Makes a big difference in the prognosis. They got us in to clinic on Friday 8/15. Apparently my pals will have to decide about a peg immediately due to breathing issues. Kind of turne dthe world upside down yet again.

 

[Atsugi]

Gooseberry, I'm so sorry for your new diagnosis. Glad to see they got you into clinic quickly.

 

[Nikki J]

Oh I am sorry. Bulbar can be slow sometimes. Will pray your DH is one of those. A feeding tube has to be individual decision but especially with bulbar think it Will give him greater quality of life. If he decides later he does not want it it could be removed or just not used. And if he gets it before he needs it then there will be no panic when he does need it

 

[pecas]

I'm so sorry. I am glad that it sounds like you're in good hands.

 

[gooseberry]

They said they felt he was on a fast progression. At least though, we both think he is in the right place to get the care he needs. They were really helpful and supportive. I wish we hadnt had to wait 3 months to be seen but I am glad we went.

 

[Nikki J]

So sorry. Glad you are comfortable with the clinic at least. Don't hesitate to contact them with questions and concerns

 

[MaxEidswick]

>said it was bulbar onset. Makes a big difference in the prognosis. They got us in to clinic on Friday 8/15. Apparently my pals will have to decide about a peg immediately due to breathing issues. Kind of turne dthe world upside down yet again.

Steph, the whole thing sucks. be aware, however, that all is not lost and life is not over ... you and Steve are on an emotional roller, so hang on and try to go with the flow -- anger, sadness, grief, depression, et al -- very few manic episodes with an ALS diag.

vent when you need to vent, pity party when needed, find humor in anything you can ...

Do you have a puppy?

 

[gooseberry]

No puppy Max. Have a 12 yr old named Julien with a ton of allergies to all things...animals and plants and half of all edible foods!

It has been so emotional. I had thought we were in a pretty stable place then boom...time to nose dive. Thank goodness we have had a ton of support from family and friends lately. It certainly has been a wonderful reminder of how blessed we are. Sometimes we forget. I just know that my son is struggling with it all. Of course he would, he is 12 but I just worry about it all.

 

[Barbie]

What clinic did you go to? Mayo or USF? I guess USF is closer to you. My youngest son was 11 at diagnosis....it was tough for him. You may want to find a family therapist --someone he can talk to openly and honestly. we went to one for a while and it helped my son deal with the emotions he had that he did not completely understand. sometimes you have to try a couple out before you find the right one.

 

[gooseberry]

Thanks Barbie. We actually just started down that road last week. He has had 2 visits. I think it will help him in time. He isnt really sure what he is feeling but he is upset and anxious. We are going to the clinic in Tampa at USF. Our intake appointment was at the South Tampa office.

 

[nebrhahe53]

I will hope for you that your PALS plateaus and stays there for a long time. It can happen.
Try experimental drugs-what do you have to lose? Some might delay progression.
Keep in touch with us we all understand and support you.

 

[gooseberry]

So the clinic visit today was the biggie...3.5 hrs. Tons of good information and some not so good. The breathing is getting really bad. Fvc down to 20%. When does one need daily breathing help? My husband doesnt use his bipap during the day and doesnt feel he needs it. Surgery for a peg getting scheduled..or at least that was the plan before the new respiratory numbers came in...lots of calls,visits,info to process. We both are glad he went. They were kind,helpful,explained things well and we never felt rushed.

 

[MaxEidswick]

>Fvc down to 20%.

these numbers are very relative -- do you know the liter volume? It will be a number like 2.3l 4.5l, etcc ...

 

[gooseberry]

They said 2.5 Max....

 

[MaxEidswick]

>They said 2.5 Max....

Well, Steph, others will be better able to know what that means. Is Steve a big guy? I think fvc is the amount of air/lung capacity -- I know doing breath stacking helps my numbers, I just can't do it right now ...