Dad has bulbar ALS

[mj95]

My dad was just diagnosed with Bulbar ALS. It's seems to be progressing fast. His speech is faint. On a PEG already. Just put on Bi-Pap. Since he was just diagnosed this week at the Mayo Clinic his emotions are all over this place. I don't want to see him suffer. I look for advise and guidance from this forum. Any words of wisdom would be appreciated.

 

[notme]

HI

Contact the ALSA. One thing he's going to want soon is something to help him communicate. They may well have a loaner machine for him to use.

Many with bulbar onset survive years with their disease and adjust fine with the PEG and bi-pap. Those things will help him--make him feel better as he'll be properly nourished and have adequate breathing support.

If he hasn't applied for SSDI/SSI he should immediately. It's approved automatically in cases of ALS. If he was in the armed forces--they have also approved it as a service related disability.

It takes time to adjust to this diagnosis. Expect mood swings and let him talk about how he's feeling. I'd suggest getting all advance directives and such in order -- as any responsible adult should consider regardless of health.

The folks here will be able to answer any questions you come up with during your time with us. We all want to welcome you to a family no one wants to be a part of. Still, there are great people here--and we'll be here for you, your dad and anyone else in the family that wants to join us.

Regarding Hospice if anyone has mentioned it to you-- get ALL equipment needed before signing up with them--beds, wheelchair, lifts, etc. Again, loaner closets have many of those supplies. A wheelchair is likely not needed -- but medicare can be slow--start the process early!

Again--sorry you need to be here--but welcome to the family.

 

[mj95]

Notme,
Thanks for your quick reply. My dad lives in Ocala Florida. He is in Jacksonvile at the Mayo Clinic, hopefully going home this week. I searched this site for info on Bi-Pap mask, explained to my dad that he is Goldie Locks & needs to find the right fit. I told him he needs to treat this diease as a disability. He can still walk, bath. The neuro sounded hopefully. I have a call into the Chapter Leader in Central Florida for info, help & advise. My mom is the primary caregiver. She is not doing well with this diagnosis. I told her they both need to seek counciling from a support group.

 

[jamiem]

I have recently been diagnosed with bulbar ALS and am struggling with muddling through this ordeal right along with your DAD. I have an IPAD with a program called Prologue2. You basically set it up and it will speak for you eg basic statements already loaded that state basic needs and emotions. It is enabling my communication. My prayers are with all of you.

 

[joni51]

My husband is bulbar, we have the dynavox ready to use. He still uses the Ipad and uses assistive chat to talk. His emotions are going to be everywhere for awhile, Bruce's were. He needs to get some meds quick for depression and anxiety to get him stabalized. Bruce would laugh and cry alot. If I can be of any help let me know.

 

[mj95]

Thank you all. What a great group of people you all are.

 

[CantuInTomball]

Welcome to the forum, mj! Wish you didn't have to be here, but it is a good forum to be a part of. There are lots of good folks here, and always ready to come up with answers, advice, etc. My son had bulbar Als, too. Lost him to this monstrous disease five years ago this month. Sorry for what is happening to your Dad. He will certainly be in my prayers. When was he diagnosed? Just recently, like this month? Was he not showing symptoms before? If his speech is faint already, and is on a peg, and about to be on Bipap, he is bound to have had this issue for a while. That is how it sounds to me. What did the doctors say/? How old is your Dad? Sorry for all my questions. May God bless each one of you, and praying for your Dad.

Irma

 

[mj95]

CatunInTomball

Sorry to hear about your son. He was so young. My dad just turned 75 in March. He was diagnosis this week June 7th 2012. He had been losing weight over the past yr. His speech started to slur in Oct. '11. By Dec he started speech therapy. His Neuro couldn't give him a diagnosis. He wanted to wait & see what happened next. That was in April. On May 5th he had a PEG because he couldn't eat or drink. On June 5th while at Mayo rushed into hospital & put on vent. Too much co2 in his blood. Today he might get out of Critical care. Has been trying different Bi-Pap mask. It has been such a roller coaster of emotion. I had a feeling he had bulbar ALS but hearing it out loud still has mixed emotions attached. The irony of it all was my dad sang in a barber shop quartet. He noticed he had trouble singing.

 

[patricia1]

sorry to hear about your dad.I lived in the villages and they have a wonderful support group the fourth Wednesday ever month which isn't far from Ocala

But the help in Florida is very limited for ALS and l had to move back to new jersey .No grants or state services and hospice offers 7 hours a week .

wThe home health aides have more work with seniors in Florida and charge so much .I paid $25 for a shower .

I don't know if your parents can move .Look into what they can receive now . Everything needs to be addressed sooner then later

good luck
Patricia

 

[panguinjen]

Mj, welcome!

My husband has bulbar onset as well. He uses an iPhone to speak, has a dynavox as well. He's been on a g-tube since March. The emotions will roller coaster for awhile, the advice you have been given is right on the mark. Ask, ask, ask... People here are great!

Jen

 

[mj95]

Question If someone is receiving SSI and is diagnosised w/ALS does SS need to change to SSD? Is there much of a difference?

 

[notme]

SSDI is employment earning based. SSI is need based. I believe it's one or the other. SSI has a cap of about$600 or so. SSDI is based on income credits.

At 75--he's likely already on what he needs to be on at this point.