Question, advice needed

[Jhutchison]

Hello, thank you for taking the time to read this post.

Long story made short, my mom, Phyllis, started with a raspy voice in April of this year. After several doctors giving her the run down and sending her somewhere else we were sent to the voice clinic at Vanderbilt. By then (Aug) mom was only able to get out one syllable words with lots of slurring. She's had weak spells that have resulted in falling, and there are SEVERAL moments of disorientation. The voice clinic told us they expected ALS, but sent us to a muscular neurologist. Mom was formally diagnosed with progressive bulbar palsy ALS the 3rd of this month. It's been very hard for us to adjust. Mom is wanting to keep her independence, but she is not making sense on a regular basis.

We communicate through texting and she carries a pad and pen when we are there, but we have a hard time understanding her wording. I get the coughing and the shaky hands altering her writing, but she's mispelling words and not making sense. I'm seeing so many people on here that have had it for years and I'm not seeing that part of it. Is anyone else fimilar with this?

We go back to the ALS clinic on the 28th for her to repeat her testing to see how fast she is progressing. I only am able to see her on the weekends, but I talk to her every day. I tried to get her to move up here, but she wants to stay in her house as long as she can. I am trying to stay positive, but every time I see her I can see a change. I'm just so worried about her. She text me today to tell me that she is getting weaker. We brought up her texting at the last appointment and they said it was normal, and maybe it is just the rapid changes that are throwing me. I'm just so used to my vibrant mother that always corrected my grammar.

So, after all that blabbing, that is my question. Is there anyone on here that has experience with the confusion portion of ALS?

An example:

Mom sent me a text tonight that said - How what why are you doing

I know that she was asking me what I was doing, but that's how she asked.

Thank you so much for taking the time to read this, but I just want to make sure that there isn't something else going on that I need to make sure is being looked at.

Jordan

 

[Alyoop]

A large number of people withALS do suffer from differing levels of dementia. Make sure your mums doctors are aware of your worries. They can test her and see if you have anything to worry about. You don't mention the age of your mum. My mum does not have dementia and is well, but she does struggle with texting and often sends gibberish. It may be that your mum is stressed and having difficulty with the technology!

 

[momofsixkids60]

Just to add, look under the ALS and MND Support Group titled ALS and FTD. There might be quick answers to your questions.

I'm so sorry to meet you here but I would like to welcome you here, here we are family. Please ask questions big or small. More than likely someone here can give you advice.

 

[KrisS]

I am so sorry about your moms diagnosis. It sounds very possible that your mom may also be suffering from FTD (Frontotemporal dementia.) Check out the thread suggested above concerning ALS/FTD. You may also look for other articles titled the same way. Best thing to do is talk to her dr. about your concerns. Don't let them brush your concerns aside. With my husband, they told me some ALS patients experience cognative issues and did not pursue testing until I insisted and it was too late to do much testing. Luckily I have been with him 24/7 for several months, but if your mom is on her own it is more criticle to make sure of what is happening. You are a wonderful daughter to be dealing with all of this on your moms behalf. I hope this helps.

 

[notme]

With bulbar onset, and the difficulties associated, I'm sorry to say it doesn't sound safe for her to be alone. Did the doc mention a Peg for nourishment, or is she having no food issues. Bulbar onset has a high risk of choking as they cannot control the muscles to move food properly to swallow.

There is testing for FTD, but is it possiblle shes just not great at texting? Although, with weakness and falls and disorientation, it certainly sounds as if she has something else going on!

Does she at least have a life alert in case of a fall?

 

[tammyg]

wow, you just descr1bed my dad before h1s DX, soo, so sorry. My dad passed from Bulbar and he started the same way, we f1rst though he had a stroke. He was m1s - DXed for 2 years. For my dad, 1f he was go1ng to have ALS, th1s was the best form for h1m to have. My dad had lost h1s vo1ce and had a feed1ng tube but was one of the lucky ones who drove t1l the day he passed.. Though h1s motorcycle he had to g1ve up several months before. Anyth1ng you need the people here are amaz1ng. ! w1sh ! had known about th1s forum then..M dad had a mach1ne to cough, suct1on mach1ne to get the stuff out(very 1nportant) and a mach1ne to sleep w1th. You need to get 1n touch w1th the ALS Cl1n1c 1n your area. They w1ll g1ve her everyth1ng she needs before she needs 1t. My dad even had a mach1ne to talk for h1m on the phone.(That just about k1lled ME)the f1rst t1me he called and the vo1ce came on, when 1 got off the phone, 1 cr1ed for hours.(sorry eye on computer stuck us1ng the "1" 1nstead.) She w1ll probley have to move 1n w1th you so be ready, they don't want to leave the1r home but somet1mes 1t 1s for the better, sorry .....

 

[panguinjen]

Welcome Jordan! My husband is a bulbar onset as well... I agree that your mom needs to have someone there with her especially if she's falling and disoriented.... We are here to listen, cry with you, laugh and just inderstand.

Jen

 

[tmackenzie]

Hi Jordan,
I replied to you on my thread as well. My mom was diagnosed on Aug. 1st with blubar palsy ALS. Her voice started going a year ago and it gradually (over many months) got worse. Today it was a struggle to understand a phone number she read to me. There is a ton of advice on here that will aide in your questions to the doctor on what to ask for. Mom now has a feeding tube for extra nurtrition and nurishment, and a BiPap. We are waiting for a Dynavox which is a cummincation device. I need to request a cough assist for her and as I learned above, a suction fo rmy mom would help tremendously. Enjoy your time with her now and make memories. Take her places and spend the time with her right now. It can change in a months time. Looking back, I took my mom to her 2nd diagnosis a month ago. She seemed carefree and happy then, a far cry from where she is today. Please visit her as often as you can.

 

[tmackenzie]

Hi Jordan,
I replied to you on my thread as well. My mom was diagnosed on Aug. 1st with blubar palsy ALS. Her voice started going a year ago and it gradually (over many months) got worse. Today it was a struggle to understand a phone number she read to me. There is a ton of advice on here that will aide in your questions to the doctor on what to ask for. Mom now has a feeding tube for extra nurtrition and nurishment, and a BiPap. We are waiting for a Dynavox which is a cummincation device. I need to request a cough assist for her and as I learned above, a suction fo rmy mom would help tremendously. Enjoy your time with her now and make memories. Take her places and spend the time with her right now. It can change in a months time. Looking back, I took my mom to her 2nd diagnosis a month ago. She seemed carefree and happy then, a far cry from where she is today. Please visit her as often as you can.

Also, I wanted to tell you my mom also has memory loss since this started. For her it has gotten much worse over these past several months.