June 2, 2020 at 7:05 am #15468
The two biggest changes brought on by my ALS that continue to be a challenge for me – – even today, are: moving slower than others around me and not being able to do things on autopilot. Pre-ALS, I could multitask with ease, pull off last-minute errands, and do “just one more thing” before dashing out the door. Now, the symptoms of ALS — moving, eating, and talking more slowly — put me totally out of sync with my friends and family. They’re out the door, and I’m still getting dressed!
In addition, my body used to operate on autopilot; my feet and legs could be trusted to walk while I paid attention to something else. Now, my body is mostly in manual mode, in which I’m actively overseeing even the simplest of movements.
ALS has me operating at a unique pace; I call it my “ALS time zone,” and it’s the topic of this week’s column:
Do you experience the same thing? How does it make you feel? Are there any helpful tips you can share with our forum members?
June 2, 2020 at 6:28 pm #15484Curtis MumpowerParticipant
Hi Dagmar! Yes. ALS does/has slowed me down. Especially in the last couple of months. Was diagnosed 11/2019. My decline has been relatively slow so far with most of my weakness in my hands until recently. I’m noticing that my legs are becoming weaker but my brain tells me to keep on keeping on, which I do but it wears me out pretty significantly. I need to learn to stop and take a break more often but I’m working on it.
June 2, 2020 at 8:02 pm #15485
Hurrah Curtis 🙂 Attitude is 90% of successfully living with ALS.
It’s learning to ride the body’s ebb and flow of energy – – mostly, go with the flow 😉
June 3, 2020 at 10:31 am #15491
Hi Dagmar! It seems like there is a physical price for everything I do. Mostly cramps and fasciculations. I, too, used to multitask easily. It is indeed different now. I can still walk well, kayak, and dance (poorly) but I cramp hard after. My right arm punishes me me in particular. As you know, every day is different. I am thankful that my progression is slow.
June 3, 2020 at 5:39 pm #15492
@dagmar-munn it”s a great point you raise. For me, I have consciously slowed down due to the risk of accidents and falling. I find that if I try to keep the pace I did pre-diagnosis that I end up having an accident. I have to be much more thoughtful in my everyday activities from cooking to walking or climbing stairs.
My advice for the newly diagnosed is to slow down and be much more deliberate in your activities. After a few falls and a visit to the ER, I’ve learnt that slower is better.
The only exception to this is speech. For me personally, this is the most frustrating and challenging part of the disease. That is, the (in)ability to keep up with friends and family in conversation.
June 5, 2020 at 12:37 pm #15511
Does anyone else out there have Bulbar Onset? I would love to compare notes. It takes me forever to finish a small meal, and my speech is slow and labored. I think that is where ALS slows me down. The SIP has been hard on all of us but eating in public is increasingly difficult. My tongue doesn’t work well. It’s a circus! People who don’t know me think I am drunk.
June 5, 2020 at 12:41 pm #15513
Lisa, you are not alone 🙂 My ALS began in my legs, but I am also having speech and swallowing issues.
I have written quite a few articles with tips on the topic, and will gather them and link them here for you.
Yes, having a tongue working slower than our thoughts is frustrating. I’ll add to this post later today.
Here it is:
– Dining out: change your focus from eating a full meal, to “it’s an opportunity to be among friends/family – – with a little food involved.” Order simple food that you can nibble on, talk, then finish later at home. Focus on talking, then only eating…never talk & eat at the same time! Here’s more: https://alsandwellness.blogspot.com/2019/12/enjoy-dining-out-with-als.html
– Speaking: expect to speak slow and “own it” – – don’t feel bad or let others intimidate you. There are a lot of slow talkers in the world; the others can learn patience to let us speak. Think of what you want to say before blurting out, learn to speak 5-6 words in each breath, vary your tone and make it rhythmic. Here are two helpful articles: http://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html and: https://alsnewstoday.com/2020/04/14/google-euphonia-ai-speech-dysarthria-isolation/
– Also, consider using a portable microphone: https://alsnewstoday.com/2020/02/11/microphone-voice-hear/
Hope these articles are of help 🙂
June 5, 2020 at 12:43 pm #15514IgorParticipant
“People who don’t know me think I am drunk.” – the same
My friends first time told me that it is 10 a.m. but your are already drunk 🙂
June 5, 2020 at 2:50 pm #15516JayParticipant
I have Bulbar as well. Yes experience similar problems ,especially when eating in public. When in public , I eat less and when I do try to stick with finger type food – helps moderate quantities as I can keep to bite size morsels.
learn to chew throughly and avoid tiny stuff that lodge in throat and cause a coughing attack – avoid chips, things with skins and nuts.
what else slows me down is that my arms , fingers and body are so happy not moving. I can do a lot with them but it takes so much energy to convince myself to function like I can and should. Each motion requires re-building that level of confidence to pick up that glass or lift that weight. and once that happens the world improves. Sure there are daily setbacks but if can conquer the fear of fighting back Our world may not be as slow as we make
best to all
June 9, 2020 at 5:11 pm #15541Marianne OpillaParticipant
I am always juggling activity vs. rest asking myself what is the right level of exercise? How much rest? How often? I can’t seem to figure it out.
My kids thought I was always drunk when I first had symptoms. I do like chardonnay and it makes me slur even more. I just warn my friends and go for it. They all understand.
I too have bulbar symptoms with atrophy of right hand and weakening left leg. I find that when I plan to be social, I can speak better if I voice rest earlier in the day. Be careful what you order at restaurants and as Dagmar said, nibble. No one notices. I never get salad because I cant get it on the utensils and it chokes me. (I love salad)
It is a terrible disease robbing us of the things we like to do. But don’t stop trying.
June 9, 2020 at 5:59 pm #15544
Thanks for sharing those great suggestions Marianne! 🙂
June 10, 2020 at 4:41 pm #15548
I’m constantly learning everyday how to manage the symptoms. I’m glad we have a forum like this to discuss how to manage normal everyday activities that can be a struggle to those with ALS.
My friends and family have learnt that I’m always going to be the last one to finish my meal!
June 10, 2020 at 4:55 pm #15550
Danielle, I totally get it! Meals take forever! I always loved dining out, but before the lockdown I would order an appetizer instead of dinner so I wouldn’t tie up a table. Eating at home there is no pressure – my family knows they can start the dishes!
Recently my right hand has been weakening. That slows me down substantially. Buttons, zippers and hooks are getting difficult.
June 10, 2020 at 6:20 pm #15553
Lisa, I gave up buttons and zippers a long time ago… and my hands appreciate it! Rah-yay for pull-over tops, t-shirts and, sweaters. And, I can order fashionable pants online with elastic waistlines (no zippers) that pull up with ease 🙂
June 10, 2020 at 6:54 pm #15555
I know what you mean about buttons and zippers. Like Dagmar I’ve done away with most clothing that involves zippers and buttons. Elastic waistbands are my new BFF. I’ve also done away with tights that I used for the gym. The struggle was too much. Luckily they’ve found a good home with my daughters.
June 11, 2020 at 4:33 pm #15559SusanParticipant
oh yes, I was diagnosed 11/19 and in my legs and some weakness in arms but still functioning…Getting dress takes 10 x’s as long but I’m very careful too. Making Lunch takes awhile but I’m OK with ALS time so far.
June 11, 2020 at 5:20 pm #15565
Are you doing any exercises to maintain your mobility in your hands and legs for as long as possible?
I’m late to the game on this, but after reading some posts from Dagmar (and blog) and getting some proactive advice from my new PT & OT, I do a number of mild exercises daily.
June 11, 2020 at 8:10 pm #15570BillParticipant
I’ve definitely slowed down. Being limb onset and heavily focused in one hand and arm, everything requiring two hands is slow and tiring. Need to constantly adapt. I’m 2.5 years post diagnosis and likely about 4-5 years into disease. ALS just slowly over last 6-12 months affecting my bulbar muscles and tongue in particular. Speak ok just needs care if I am tired. Yup, eating getting slower but still on slow side of normal. Forget being aggressively active!
June 15, 2020 at 12:49 pm #15583
Excellent Danielle! Moving your body with daily gentle exercise will help not only your physical body – – but your mental health as well; with more energy, self-confidence and positive mindset 🙂
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