Seeing ALS Doctor 1st time After Diagnosis

[mariam]

Your dad sounds exactly like my dad. We had another dr appointment yesterday and my dad just thinks everything is fine and since he feels good, nothing is wrong with him. I too a afraid to bring up the PEG with him because he thinks he is healthy except for his memory loss and slurring. He is strong in his legs and arms, so he looks healthy. Good luck to you. You and I have similar paths ahead of us. Lets keep each other "company".

 

[wendyj]

Hi I was dignosed with ALS on Oct. 8th. My mother,sister,aunt,and uncle died of ALS. So you can understand I am scared. My symptoms started

in my right leg. I am now using a walker. My first Dr. visit after diagnosis will be tomorrow. I really don't know what to expect. It is at an ALS clinic. Help.

 

[Nikki J]

Hi Wendy. Welcome but so very sorry you have to be here. I am from a FALS family too. My sister is the first of our generation to get ALS. We are c9 orf72. Do you know your gene?
Is tomorrow a consult with a new neuro or a clinic appointment. If it is clinic you will see lots of different people pt ot pulmo tests etc. ask lots of questions and have someone with you to take notes. If it is consult it will be history exam discussion of what you want. Maybe talk of clinical trials. Are you going to UMass or MGH? Both are great.
Good luck with your appointment

 

[ECpara]

Encourage him to get a PEG as soon as possible. My husband got his a year ago before ever needing it. He started using it shortly after just to take his pills - crushes them up in sweet tea and puts that in the PEG. Just in the last month he has gone to using the PEG for all nutrition, swallowing has become very difficult. He can only swallow small amounts of Boost and eggnog, not nearly enough to sustain him. Thank goodness he has that PEG! I pray your dad will decide in favor of this. God bless! PS, for encouragement, even though my husband can't speak or eat at all, he is still totally independent; golfs (low 80s), drives, hunts, does yardwork, mows the lawn, types, and enjoys life!

 

[wendyj]

I am a SOD1. I'm going to Umass in Worcester. I am having trouble walking even with a walker,but I don't want to give in to a wheelchair. I have read most of the forum and I know what is coming. I feel lucking that I started in my leg.It's been a year.

 

[zoohouse]

Each time that he coughs when eating he risks aspiration pneumonia. My husband does not have bulbar involvement, so we didn't think a PEG tube was necessary, then we noticed that he was having difficulty breathing while laying down. By the time we got in to have it checked his pulmonary functions were 37% of normal. We almost mist the window of opportunity to have a PEG put in.
I believe that there is a person on this forum that was denied as he was at 40%, and did not tolerate being laid flat for the procedure. So if your father begins to have any difficulty breathing while laying flat he should have it put in immediately. Have you discussed with him whether he ever wants one at all?