Facial Fasiculations?

[shelleynshaggy]

In the past two weeks Jim has developed fasic in his biceps and his face - the muscl? right above his right lip. In humor we call it "the Elvis Presley" look. Is this common? Which "type" of ALS is this associated with? (bulbar?)

He also has had "breakthrough spasms" at night. The doctor increased his baclofen he was on 40 - now up to 60 to make it through the night. Does this really happen overnight? (ok maybe a week). Even with the baclofen he still feels some spasms and is having some trouble sleeping. ~~suggestions? ideas?~~~


~~~~~On another note~~~~~~
We have been considering "giving up" our house for apartment life. Any PALS live in an apartment?

Lastly, please say a quick prayer - Jim's grandfather (who is more like a dad to him) is in ICU. His blood sugar was over 1,000! Dr's have no idea how he escaped a coma.

 

[marya]

Shelley - my husband and I sold our two story home in 2008 about 6 months after Marty fell and broke his femur and and after a short time in an apartment we moved into a high rise condo in downtown Houston. We lease rather than buy - I had a feeling that I would need more liquidity in money since I knew something was wrong with Marty even then - I just didn't know what. We came downtown because the things we like to do have always been downtown - Minute Maid Park for the Astros, the theater, the Houston Symphony, and the Opera. So, it makes it easy to walk - or in Marty's case now roll - on over for the things we like. Be very careful about the apartment scene. It was a VERY long walk to the parking garage and while we lived in an upscale brand new, never been lived it complex - we are older and the young professionals living there were friendly and nice - they also party like 20 and 30 somethings. It got pretty loud many times. Good luck - Mary

 

[Just J]

Shelley, no help on the facial fasic. but I have a question about the baclofen. When you say dose was increased to 60. Do you mean a single dose or throughout the day? Mike is taking about 100mg daily (20mg 5xday) but he needs more. Iv'e seen some posts on baclofen pump but we havn't looked into it yet.

As for living space, our home has everything on first floor AND our community takes care of the lawn with HOA fees. I can totally relate to an apartment though. I'd consider selling and moving to a condominium just to have less house to take care of. I'm working F/T, taking care of Mike, house, and cars. Its too much. But somehow I get through.

 

[BarryG]

Shelley, I have not had a lot of twitches but I have had twitches like you describe in both my upper and lower lips. Is this a bulbar thing? I don't know but I have bulbar so.....

But before all you twitchers with a scratchy throat out there get your undies tied in a knot, this started happening a full two years after I was diagnosed by a qualified neurologist and at the same time as I stopped talking and eating.

 

[sadiemae]

Shelley, We rent a townhouse, all yard work and repairs done by owner. Ours has a 2 car garage, and we have no attached walls with the other units. We even have 2 small patios. The owner of our place is great, he comes over for any little thing(like replacing filters) Apartments can be bad as you have no control over neighbors. Also, our landlord is great about letting us put stair lifts and wheelchair ramps and shower bars, ect in the place. He has also assured us that this is a long term rental, we will not have to worry about leaving when our lease is up. HUGS Lori

 

[handinhand]

Shelley, I have Twitches all around my chin. This started a couple months into my diagnosed. Now I have them under my eyes and just lately I will have a spasm on one side of my mouth and yes I would call it the Elvis look....doesn't look near as good on me as it did Elvis...L

 

[DanaLRazo]

Shelly,
My husband has facial fasiculations continually for months now, he was diagnosed Feb. 09. His diagnoses was Bulbar ALS/ with emotional liability. He is currently taking 20 mg 4 times a day. It doesn't even seem to be helping anymore. All the meds he is currently taking doesn't seem to be doing a darn thing for him. His pain level is 8 continually with major cramps and spasms. To me it looks as though he has electricity trapped in his body and its looking for a way out! We just returned from our visit at Stanford with Dr So and they are now giving him 1mg Klonopin ? He took the dreaded breathing test and his lung capacity dropped 20% in two months! We live in a townhouse, two story with both bedrooms upstairs! Everything seems to be against us, we can't find a single story home or apartment for rent so we have turned our front room into our bedroom. He rarely goes upstairs, only when he needs to but soon he won't be able to even so that so...... here we are again, another obstacle to overcome. It really doesn't matter our bedtime is 3:00 am

So since his first sign in Oct. 08 and diagnosed in Feb. 09 we are now at a lung capacity of 49% ? Makes me sad to be here going through this, watching the person I love most in life suffer. And to just see all the sick people and there loved ones today at the hospital broke my heart.

You are not alone in this, I can't really offer you any new advice but just know we are in this together.

Blessings,
Dana

 

[shelleynshaggy]

Jim takes 10mg pills - 2 in am 1 in afternoon and 2 at bed (the last 3-4 nights one more sometime between before bed and morning)

As for the apartment - I have decided to talk it over with mom and his aunt. I am going to at least look into it. I have decided that if it is meant to be I will find a 1 story apartment either close to mom or my sister and it HAS to accept my 2 furbabies or NO DEAL. I really think there is a reason I adopted my little Sushi just weeks before this ordeal started - no matter what she lifts me up. (If nothing else she has a face only mommy could love!):wink:

I also found out the PA at the ALS neuro's office is gone. Thank God for our "good" PA! As for the one that left - good riddens - no love lost - but I have wasted 3 days (and now the wkend) waiting for her to return my call. You'd think she'd at least change her voicemail.:roll:

I never found Elvis attractive - but this facial thing is definately better on him then Jim!:grin: