New CALS saying hi

[brjak]

Hello, This my first post. although I have read the forums for a couple months.

My mother (72) has recently been diagnosed with ALS (bulbar onset). She has had symptoms for 18 months. Unfortunately every doctor we saw tested and treated for the specific symptoms. She has had the raspy voice for almost 2 years. We always attributed it to 40 years of smoking. She has quit for over 12 as we speak.

We have seen a steady degeneration over the last year. Once we were referred to the ALS specialist. Things have started to get better. She is now going on bipap at night. She is drinking boost for meals as she chokes with most solid foods.

She has gone from walking normal to a cane to a walker in a matter of 4 months. The ALS seems to progress quickly. Here hoping it will slow for a while.

 

[Al]

Hi, welcome but sorry about your mom. Hope we can help. Have you contacted ALS Ont.? They can be a great help.

AL.

 

[brjak]

Yes just registered with the ALS society today. Is this the same? We were informed they would be in touch shortly. It is sometimes confusing when dealing with so many different doctors and specialists to figure out who is the one organizing and responsible for everything.

 

[Al]

Yes, same thing. I know it can be confusing at first. Are you dealing with Sunnybrook ALS Clinic?

AL.

 

[Al]

You can send me a private message if you'd like. Click on my name and then the private message in the drop down menu.

AL.

 

[brjak]

Yes to Sunnybrook. They seem to be on top of things. I think they go through the process so many times that sometimes they may leave out some details. I am not criticizing them. In fact I think they were wonderful to deal with. Much better than I had expected. I'm speaking more from a sense of being overwhelmed with all the people, agencies etc. that we need to get in touch with.

 

[Katie C]

My husband also had bulbar onset and was adament about no feeding tube. I finally dropped the subject. But we kept his weight up and helped him enjoy his meals by pureeing just about anything .. yes, even pizza. Get yourself a good sturdy blender (I burnt out two before finding one I liked). Cut the food into fairly small pieces then add cream or other liquid and puree to a consistency your mom can handle. For Glen, it was a thick pudding consistency. And we also added thick-it to his liquids... believe it or not he was still able to have a beer with dinner and said it didn't really effect the flavor. I never tried it to verify.

 

[Jellycat]

Hello there. I'm glad you've posted though sorry to hear about your mum. I look after my mum who is the same age as yours and also bulbar onset. It's a rollercoaster often enough with changes hard enough to keep up with so if I can be any help please be in touch.

 

[tdamess]

hi , welcome you will make good and smart friends here