tongue twitches

[rocmg]

hi all... my mum has fascics on her tongue when it is resting in her mouth. Sometimes they are there, sometimes they aren't. tonight for instance, i couldn't see any.

Her tongue mobility is still very good -- she can count all her teeth and lick her lips. she can whistle a little bit and she can still blow up a balloon, granted it is with a bit more effort than before ALS (soft palate lazy, but still trying to work -?) her first symptoms (slurred speech) were a year ago first half of April. She has fascics in both arms, and atrophy between her forefinger and thumb -- noticeable, but not "shocking." my brother is a personal trainer and assesses her breathing every week and says it is very strong. she's also doing light weights at the gym, and drinks 2 high calorie protein shakes everyday, which has helped her regain a little of the weight she lost around the period of her diagnosis when she had no appetite (for obvious reasons.)

She's still walking 3/4 miles every other day with the dogs and appears to be in good health otherwise.

I just wanted someone's opinion about her progression -- from what I've described, does it appear to be relatively slow? Or should I be anticipating a sudden dip downhill? I just need to keep my optimism in check. Thanks.

 

[rocmg]

also, her swallow seems pretty good. i've slowed down my eating habits too, so we usually finish together. that way she doesn't panic and think she's getting worse because everyone is finished their dinner before her. she's managing well just taking little bites at a time. the problem she has with chewing is that sometimes she bites the sides of her cheeks which is uncomfortable for her. we don't talk or ask her questions when she has her mouth full which helps, since she doesn't rush to swallow to answer us.

also, I was thinking about how long MND has been "working" on her. When I lived in America and I hadn't seen her for 5 months from August 07 until December 07, I remember looking at her face and it seeming less plump than it was. I remember saying to my brother that I thought mum was looking older. Her skin was thinner, almost more translucent or something. Perhaps it's something only a daughter would notice. It was a very subtle change. I realize now the disease must have been working on her since then -- perhaps as much as 6 months before the slurred speech. i put it down to her age, getting older, hormones.obviously hindsight is a wonderful thing.

 

[BethU]

This is just an impression and a guess, but it sounds to me like she is doing very well and the progression sounds slow. I wouldn't anticipate any sudden dips. I don't know how ALS generally works progression wise, but I would guess that it wouldn't speed up suddenly.

I'd stay optimistic and hopeful for a continuing good quality of life.

 

[rocmg]

thanks for taking the time to read, Beth.

How are you doing these days?

 

[BethU]

Hanging in there. A little bit worse, but fortunately researchers have figured out ways to help manage our symptoms. Until they find the cure, these help a lot ... the tube, BiPap, suctioning device (which looks like it could suck a 747 out of the sky) and cough manager next week.

I keep thinking about the job you gave up to go help your mom. That was a sacrifice of the first magnitude. I hope the opportunity comes back to you many times over.

 

[rocmg]

aw, i felt a bit silly/selfish after posting that "dilemma" post a while back.. mum was always going to come first so it really was a no brainer. as we say here in ireland, "what's for you is for you and it won't go by you." i was back in new york last week and my heart's just not in it anymore. i read on your profile you were an journo/editor, too -- it's a stressful life, right? all the old school reporters i've worked with think the internet has changed the whole business and it's not the same anymore... do you miss it? i'd bet you'd make the transition to blogging no probs, Beth!

 

[rocmg]

RE: that cure you were talking about...

I check the forum as religiously as I check my email... when mum hears me tapping away in here on the computer, she pops her head around the corner and makes a little joke -- she says, " is there a cure for me yet?" i always tell her, "help is on way! we're coming -- just hang in there!" haha (BethU inspired)

 

[thelma313]

I am also just giving an impression but I agree with Beth in that your Mum's progression sounds pretty slow. It is definitely slower than my Dad's. He started with slurred speech 13 months ago and today he requires an orthotic on each ankle, needs crutches, is getting a BiPap on Tuesday and a feeding tube next week and can barely talk. He was told he can't drive anymore and that left him very depressed for a few days. He seems to be regaining his spirits now though. He is a real trooper!

Did you hear of your Mum's diagnosis while you were in America? Coincidentally I was working in New York City too when I found out about my Dad. It was hard to be far from him. I flew home for the weekend but then had to go back to NYC to finish the job I was doing. I was editing a documentary so it wasn't a permanent job anyway but my first instinct was to quit and return to Canada although my father wouldn't hear of it.

As for the computer, my Dad is always curious to know what other people with ALS have to say. Whenever he sees my tapping away at my lap top he asks me what else I am going to make him do since I have been the one telling him everything he will need even before his neurologist tells him i.e. feeding tube, BiPap, antidepressants, etc.

Hang in there rocmg! You are definitely not alone in this.

 

[rocmg]

hi thelma -- thanks for replying. i'm sorry your dad's progression has been fast. i can't begin to understand how our parents deal with this disease. your dad sounds like he has had to deal with a lot in such a short period of time. it's good you're there to look out for him. our neuro said that there's usually one person in each family that takes it upon themselves to learn everything about the disease and help anticipate the next steps -- i guess we're those respective people!

my mum was sick when i was in America. my family hadn't told me just how serious things were until i was home for christmas and had the chance to sit down with mum for a real chat -- her speech was slow but it wasn't alarmingly so. it was then i learned she had been attending a neuro and had been for an EMG. we had had a few fleeting telephone conversations over the months -- her speech had sounded fine on the telephone. i put the slighly-longer-than-usual pauses down to the bad phone line (!) when i read on the doctors report, "has not agreed to start taking rilutek just yet" I was beside myself. that's when i started posting frantically on here. my aunt confided in me that mum had wanted me home for a long time, but didn't want to upset my life and my plans. but you do what you have to do in these situations. still praying for that cure.

How has your dad been about the feeding tube? i can imagine my mum won't take that too well, if and when the time comes. did he take much convincing?

 

[thelma313]

My Dad spent the winter in Florida, far away from his doctors. I went to visit him in February and early March and was alarmed by his weight loss and progression. That's when I started making high calorie smoothies (thanks to Beth's advice) and forcing him to eat as much as possible. He had a hard time sleeping and I suspected a sinus infection so I also got him to go to the doctor's in Florida to get a prescription of antibiotics (thanks to Al's advice) and then proceeded to organize an early return and enlisted my wonderful cousin to fly down to Florida to drive my parents back. They take their car down there every year. This is why so much is happening so fast now. Basically my Dad had no appointments for 3 months so now he has some catching up to do. I suppose, like you, I am the one in the family who has taken it upon myself to find out everything. Your Mum is lucky to have you too!

At first my Dad wanted nothing to do with the feeding tube and it was not up for discussion. In Florida I brought it up again. I described it to him and told him "Everyone with ALS gets one" (like it's some sort of fashion trend) and he was a tiny bit more open to it. I also volunteered to get one first so he could see how easy it was and he laughed of course but when I explained to him that keeping weight up was the best way to slow down the progression he became more willing. What finally convinced him is that I promised if he got one, he could eat whatever he wanted whenever he wanted and I would stop nagging him to eat.

As for your Mum, I would share with her what other people with ALS have had to say about the feeding tube. I think my Dad had this image that it would be a tube going down his throat but when I told him it was like a second belly button that opened it up more for discussion.

I'm sorry you had to give up your job in NYC. That said, I would have done the same thing in your shoes. My job ended in November and I haven't pursued any other contracts in NYC. Luckily there's work for me here in Montreal.

I'm still praying for that cure too!

 

[BarryG]

Hi rocmg and Thelma, I just thought I would put in a word about my peg tube experience. The very first clinic visit I had after my diagnosis the doctor said "and we should start to think about a feeding tube". I thought to myself "What is this we? You can think about it all you want, it's not going to happen" but 8 months and 40 lbs lost (and I was skinny to start with) later I asked that same doctor to set it up for me. I've had it for about a month and a half now and am happy to say that I've gained almost 8 lbs back and I don't have to spend all day eating. Who knew a hick from the sticks like me could be part of fashion trend? So when my wife gives me a hard time for watching "fashion file" I can say it's education!
Keep up the good work both of you, your parents are lucky to have you working so hard for them.

 

[DgtofTNfan]

rocmg and Thelma 313, I appreciate both of your posts. I can understand where both of you are coming from. My family seems to be in denial and looks to me to disseminate info and pursue medical help asking those tough questions. It is tough but I am a "doer" and I have to keep at it for my own mental health. At our first neuro MD where the diagnosis of ALS was confirmed, the MD told us that there is no cure but we are making strides in managing the symptoms and staying one step ahead. This is where I feel I can help. My mom is responsible for the day to day care and assistance my Dad needs. Anything I can do to help them keeps me from feeling helpless.

Barry, I love your posts! Humor is the best medicine and you have it in spades!

romcg I love your quote, ""We can live 3 days without water... 3 minutes without air... we won't last 3 seconds without hope." The first research about ALS I read was all gloom and doom. This forum has given me hope.

 

[thelma313]

Barry I am so thrilled that you gained back 8 pounds! I'm going to tell my Dad.
And your humour is definitely appreciated! Thanks Barry.

 

[danjay]

rocmg andThelma - When I got my PEG back in August my weight was down to 127 lbs from the 175 I had weighed most of my adult life. I am now up to 150 and starting to have trouble getting my pants buttoned. Trying to slow down the weight gain now, I think 150 is a pretty good level for me. This is a cruel and vicious disease and for me the strongest weapons in maintaining the fight are the PEG and the bipap. It's not like taking an aspirin but this isn't just a headache. It's important to get beyond the resistence and take these actions. I have yet to see a downside. All the best
Dan

 

[BethU]

Yeah, rocmg, I'm having fun blogging, but it's mainly fluff. There is something special about working in print, though, and I'm glad I was able to enjoy it for a few years.

But life is all about change and adapting.