Mom newly diagn. today

[dianelynn17]

Thank you! Happy New Years!

Hello Jane & Al & All of you,
My Mom has a full mask bipap now. It really has been helping her alot.
Thank you for your info on this. Also I don't know but since she has been
taking her Riluek(hope its spelled right:mrgreen: ) Her speech and swallowing
has improved to the point where she doesn't choke on what she eats
and I understand what she is saying to me. My whole family does. It
use to be this day would be good and that day I couldn't understand what
she was saying but now its been 2 wks. Thank you Jesus. Each day is a
blessing when she does good. I try to make the best of our time together
which is mon-fri 8 to 5. I love making memories with Mom. This will be in
my heart forever. She is in a wheelchair now and loves sleeping in her lift
chair over sleeping in her hospital bed. We feel whatever is comfortable
for her now. She has a hospital tray that fits her chair and a hospice
nurse and bath aid that comes in 3x's a week. I just have to Thank God
for the Good Days that Mom does have. Christmas was very nice and
memorable and I am so glad My Son, Michael got to spend it with her. Not
knowing how much longer she has, it sure is nice to have that memory too.
Well you all have a Nice New Years and I pray it will be a wonderful one for
you all. thanks again Cindy and Al for your help on Mom. This forum has been
the most helpful place I know.
I do have one question, Mom will be seeing a neurologist that specializes in
als disease the 30th of this month. Does anyone know what we can expect from
this visit? We were referred from her other neurologist to see him.
Its at the Cleveland Clinic. What a wonderful place this is. We are so pleased
with everyone there. Thanks for your help.
Diane:-D

 

[Al]

Hi Diane. While the clinics can differ a bit on approach they will probably want a full history on your mom so if you have kept records of operations different meds etc. and the names and dates of the Neuro's she has seen it will help. They may want to do a set of EMG and NVC tests as well as blood work. If she hasn't had an MRI and lumbar puncture they may want to do those as well. Hope this helps. Maybe someone else has been to that clinic and can advise more. AL.

 

[dianelynn17]

Hi Al,
I think you misunderstood me, Mom has been diag. with ALS. She has had all the tests you mentioned. mri, emg, blood work etc. I was just saying how well Mom has been doing on her pill, Riluek. Diane

 

[Al]

OK. I was just referring to your question about the Cleveland Clinic. I read it as her not having being there before.Guess I better pay more attention. If it was her first visit they may have wanted to do what I had said. AL.

 

[dianelynn17]

Cleveland Clinic

Hi Al,
No, thats okay. I might of worded wrong or that way. Mom is going
back to Cleveland Clinic the 30th of this month to talk to a Neurologist
that specializes in als. I have to say at times...its so sad watching your
loved one go thru this crappy disease named, als. I simply hate it.
Diane

 

[Al]

We all do. I go back to my clinic the 16th. Probably nothing new but a little deterioration but strange as it sounds I enjoy going there. Weird I know but the camaraderie reinforces me or something. AL.

 

[quadbliss]

Hey Al,

I also enjoy clinic visits. I have been going there for eight years, and they are my friends. It is more about them learning new ideas from us, than us from them. We end up with all the specialists gathered around in our exam room to shoot the breeze.

Mike

 

[anne]

Hi Al... I am not at all surprised that you enjoy going to the clinic. Myrna, Olive, Frances and the gang at Sunnybrook are all so wonderful and very supportive. Do you see Dr. Zinman? My mom has decided to have a feeding tube in place and Myrna has arranged an emergency referral for her to have this done. We are waiting for the call. I am really scared and I hope everything goes well. I hope my mom adjusts to it and I hope this will get rid of some of her stress. Anne

 

[Al]

Hi Anne. Yes I do see Dr. Zinman. Don't be scared about the procedure. I hear it is a pretty routine thing and may take a bit of getting used to when it is in. Tell your mom I am thinking of her and let me know how she makes out. You can call me or post on here. AL.

 

[anne]

Thanks Al for always being supportive. Anne