Hi Everyone- New here

[LeslieR]

Hello,
My 76 year old father was diagnosed 3/2/17 with bulbar onset ALS.
I stumble upon this forum and decided to introduce myself. My father's symptoms began in November and were not immediately noticeable to others. By January we could all tell that something was very wrong. in February he had the battery of tests, MRI's, EMG, Lumbar Puncture, Blood work and we got the official word in March.
I'm very worried that he seems to be progressing rapidly.Every time I see him he seems a little worse.
He lives about 7 hours away from me (with my mom, who is also fairly frail with insulin dependent diabetes) My only sibling is deceased.
He is still independent and driving but for how long I dont know.
Is there anyone here that has experience an older parent with bulbar onset ALS ?
I guess I'm rambling but it is so overwhelming!
Thank you for listening

 

[affected]

I'm very sorry for his diagnosis.
Bulbar onset is often rapid, my husband was rapid bulbar onset.

Is there any chance you can move in with them to help out?

Your mum is going to need a lot of help and support if she is frail with health issues. We can help you try to figure out the best ways to help them out.

 

[Narrowminded]

Hi Leslie, welcome. You will find lots of help here. Tillie is a wealth of information as are others.

Hugs,

Sue

 

[soonerwife]

So sorry to hear about your dad's diagnosis. My PALS has bulbar onset but he is 53 and has what seems like a bit slower progression. You have found a great place for support.

 

[LeslieR]

Thanks, everyone, for the welcome.
I can't move on with them- I still have a middle schooler at home and kids in college that I am supporting. I've talked to my mom and I think they will both move in with me when the time is right. I want him to have his independence for as long as possible.
Thank you for the support!

 

[Rebecca123]

Hi Leslie,
Sorry to hear about your dad's diagnosis. Like you, I am new here too. My dad is also 76, diagnosed March with Bulbar ALS. My mom has a neurological disorder so this is a lot for her. I have siblings but we all live out of town. I have been coming home every other weekend and notice that my dad's health is declining. It's very hard to see but also hard living farther away. This is all new for us, so lots to take in and hard to know where to start. Everything seems to take time so try to get occupational therapist and personal support worker in place. The sooner you get these things in place the better. If you need information on this your ALS clinic should help you with this. We were assigned a caseworker who is helping us. Just met her yesterday and she has helped us with what we need to do. I hope a caseworker is available to you? There is a lot of information and having a caseworker will help you get things in place. I'm sorry you are going through this but hope this information will help you. This forum has great information and their stories are very helpful. Please keep in touch. Sending some hugs your way!

 

[affected]

Hi Leslie, OK they will move in with you, that's great

Both you and Rebecca (welcome to you as well) may find it very helpful to read the newly diagnosed and anticipatory planning stickies. Click on the General Discussion section.

One thing you may want to think about early is the accessibility in your home for pwc and the bathroom setup.

Use the search function here to find lots of information from things that have been asked and discussed already, and ask your own questions as you need.

 

[RainyDay11]

Hi LeslieR,

I am new to all this as well, but my situation mirrors yours in a lot of ways. My now 75 year old mom has bulbar onset ALS, The process of diagnosis (4/16), etc. sounds exactly like my mother. Feel free to send me a message or to discuss on here. There are a ton of ways to stay ahead of the ball and I'm happy to share them all. I moved back from England in November to take care of her.

She was driving very well and independant, but totaled her car in October, so it's something to think about.

And try to do voice banking as soon as you can. My jerk of a brother never had it done before I moved back, and it will comfort you later.

Best,
Rachel

 

[LeslieR]

Wow Rebecca, our stories are so similar! We are still waiting on an appointment at the ALS treatment center clinic. I think he is going to need a feeding tube soon as he is losing weight and having difficulty eating.
Rachel, I definitely want to start voice banking! I am super sad that I switched cell phones in october and lost my saved voicemail messages.

Thank you everyone - Have a great day <3

 

[RainyDay11]

It's my biggest regret that I was unable to move back to the US in time to do voice banking. Go for it!