What is, or has been the biggest adjustment for you in living with ALS?

[Ginger]

My Biggest thing living with the Beast (ALS) is not being able to eat solid foods. Going to restaurants with my family and I can’t enjoy the food and it smells so good. I guess I could order something and lick it and then husband can take it home for himself. ha ha ha ha ha. just kidding but maybe it would work. mmmmmm, the smells but my husband and I have come up with a new way of feeding me. He’s my chef and he will announce I’m having  white broccoli and steak in my bag for feeding me tonight and then turns on the air frier so I can get the smell of the food. yummy just how I like it. medium raw steak and crunchy broccoli. I have a menu to pick from so I always get my favorite smells. Tonight it’s fish and chips, yes I do miss eating solid food.

[Carol]

I see that this feed is old but for some reason it came up in my inbox today.  Perhaps because the comments reaffirm my decision to decline the feeding tube.  I am 68 have had symptoms for years and when I can no longer eat it will be time to say goodbye

[Bill]

I’m with Ginger. The hardest for me daily so far is eating. I’m scheduled for feed tube in about a week. I went from loving to cook and eat to dreading it. I’m hoping eliminating the stress with enable me to enjoy eating a small amount at meals with family.

[Kathy stitz]

I was diagnosed with ALS 2 years ago, in June 2020.  I am now 45 years old. For me there have been so many challenges and it’s hard to single out one thing as being my biggest challenge.   I guess I would say emotionally with accepting this diagnosis and dealing with all of the feelings that result from it like depression, anxiety, anger, grief, and frustration has been very difficult for me.   Knowing that there is no cure for ALS and that I’ll never get better has been shocking and overwhelming.   I grieve for all that has been lost.   I am afraid of dying and the average life expectancy after diagnosis is only 2 to 5 years.   I tend to worry about what the future holds instead of trying to enjoy each day.   I feel so bad for all of us who are suffering every day and I wish I could make it better for all pALS.

[Amanda]

@Kathy,

Your post is touching and expresses raw emotions that I believe most pALS experience and some may have a difficult time discussing. You are brave and your contributions on the forum are insightful. Thank you for being able to express yourself and to encourage others when you can.

Amanda

[Trevor Bower]

My biggest adjustment is not being able to continue to be self sufficient. I need to depend on others to even do simple things like changing a light bulb in the ceiling. Mowing the lawn and planting and taking care of a garden.

 

[Maggie Broeren]

Letting go of my independence has been ver hard.

[Dagmar]

I agree Maggie. It was hard for me to always ask others “please, can you help me do…?” But I’ve since found that others really want to help and feel good that they did.

[Mary Kate Smith]

My biggest adjustment has been to not being to talk or eat. I use my phone gorgeous speaking and have a feeding tube. I do miss drinking a big glass of water. Other than those 2 issues I am thankful that I can still do everything else. Completely take care of myself.

[Dagmar]

Yes, gulping down a glass of water. For a long time, I had yearnings to drink 7-up. Missed that tart fizzy taste 😉

[Ginger]

Mary Kate Smith

Your not alone, I have the exact same issues.

[Kathy stitz]

I agree that not being able to eat or talk are also very big adjustments to have to make when living with this terrible disease.  I also have a feeding tube and miss being able to eat.  I have lost a lot of weight.  It’s also hard to be at family gatherings or out with friends and everyone else is eating and enjoying their food and I’m just sitting there watching them.  For me it feels embarrassing to not be able to speak.  It makes me not want to be around others.  I use pen and paper or text to speech on my phone to communicate but it’s still so awful to try to cope with these changes.

[Ginger]

Good Morning Kathy Stitz.

Yes it’s very difficult to be around your family and friends at restaurants, BBQ, special events anything that as food.  Do you live alone or are you married. I’m married and my husband takes very good care of me. What he does because he know how difficult it is for me to go to restaurants, so when he takes our puppies for walks he meets up with he good friend and will go to breakfast or lunch before he comes back home. This way I’m not required to go with him. Other ways of getting around restaurants and your out with friends in advance before you meet up talk with your friends and let them know how you feel about going to restaurants,  see if they could eat at a restaurant close to a Mall or shopping center and then ask if one of your friends would like to join you at the mall. You don’t have to necessarily  shop but a good walk in the mall would be nice. I like to people watch. So I just hang out in the mall while my husband or my friends have something to eat. At home, my husband will let me smell and taste the food with my finger. It does help. Loosing weight is a not a good thing. your not taken in enough calories or protein to maintain your weight and feed the beast (ALS) My husband maintains my weight at 136, Breakfast: Two  cans of TwoCal HN and one bottle of Ensure Protein Max. half a bottle of water, for dinner he does two bottles of Ensure Protein Max half a bottle of water. I weight myself everyday to make sure I’m not loosing weight. You must and I mean must keep your weight up. I get about 2200 calories everyday. but I’m an active person, I play golf twice a week, my husband loves karaoke so we do that on Saturday nights and I dance a lot while he is singing. I walk with him with our puppies, I’m hoping to start riding my bicycle again, we do plan small trips on our bicycle with a couple of our friends. You have to stay busy, don’t let the beast take over your body. you must stay strong and positive that is important. also, I forgot to tell you, do you have a cell phone if you do download the speech assist app, it’s awesome and you don’t need pin and paper, get the boogle board you can order it off Amazon. I keep the boogle board with my incase my phone dies and I have no way of recharging it. I hope this helps keep your weight up and stay positive. Keep positive and if you would like to keep in touch with me my facebook is gingermonette If my husband and I come of with some new technic to make my life easier I will let you know. Take care and kill the Beast (ALS)

 

Ginger

[Kathy stitz]

Hi Ginger,

Thank you so much for your post and for your suggestions.   I am not married. I live with my mother.  That’s wonderful that you have a supportive husband and that you are doing activities that you enjoy.   I was diagnosed with ALS 2 years ago and it is definitely life-changing.   Take care and best wishes to you and to all pALS and their caregivers.

[Ginger]

one thing I did forget to tell you I was diagnosed 4 years ago and going strong. you can do this. I believe in you. tell what are you eating with the feeding tube?

 

Ginger

[Kathy stitz]

I have a few containers of high calorie Boost each day and water or Gatorade several times a day.  Sometimes I try to eat some pudding or mashed potatoes.

[Ginger]

Good Morning Kathy

I see your not getting enough protein and calories in your body. It’s very important you take in lots of protein and calories. What is happening to you is your pudding and mashed potatoes are not helping you. Its okay to eat them but most PALs don’t realize when you eat you are burning more calories eating your food than a normal person does. That is why you are loosening weight. What you should be doing is taking in more of the Boost I hope it has lots of protein in the boost. and eat the pudding or mash potatoes as a snack or evening dessert. you need to maybe talk to your doctor or a dietician,. Are you putting the boost through the feeding tube? If so you need to add two cal also at least two cans. that will give you more calories and it will help you. Are you taking any ALS medicine. Please talk to your Doctor. Do you have anyone from the ALS community coming to your home to help you. I would suggest getting a ALS sponsor to help you figure things out,  your going to need the help anyway so you should give them a call.  Take care and look me up on facebook.  If there is anything I can help you with let me know,

Ginger Monette

 

 

 

[Kathy stitz]

Ok thanks Ginger.  Take care.

[Bill Corrigan]

My biggest adjustment has been how difficult it is to get around. My diagnosis was Groundhogs day this year and I have weak feet and legs. No symptoms above my hips. Putting on clothes is hard. I miss running, but I am participating in wheelchair sports to get my excitement. I got a stairlift and I don’t miss climbing up stairs!

[Dagmar]

Yes, I miss being able to take off running too. Interestingly, I use a rebounder to walk in place… once in a while I go a little faster (soggy jog!) and it “feels” like I’m running.

[Susana Rave]

My biggest adjustment in living with this disease is losing my independence and having to rely on my husband to do the simplest things like making the bed.  I was diagnosed in October 2019 and while I have a slow progressive ALS, I am still walking albeit with a walker at lease I can still move around. I can still take care of myself, i.e. shower but I miss not being able to do things quickly and that is so frustrating!  I am getting a stairlift installed so I’ll  be able to go upstairs without too much effort.

[Chris Spott]

I have been writing some essays for folks on what ALS has been doing to me and how I’ve dealing with it.  Here was my last one.  Hopefully some of the salty language does not offend.

 

Atrophy.  Merriam-Webster Dictionary defines it this way:

• Decrease in size or wasting away of a body part or tissue.
• A wasting away or progressive decline.

A disturbing description that can make the imagination shiver.  An even more disturbing observation that can make reality shiver … watching it happen in real time to your own body.   To witness, to feel, to actually experience the wasting away of body parts.  Muscles disappearing before your eyes.  Legs, arms, hands, feet shrinking.  Movement slowing.  Its one thing to be in an accident and wake up paralyzed.  A sudden shock of finality that you must immediately learn to deal with.  My paralysis is happening in slow motion.  A little bit at a time as the pool of molasses thickens around me.  I can stand but my legs slowly become undependable. My fingers gradually become unreliable. My arms become leisured in their usefulness.  My emotions are exhausted because uncertainty is constant.  I’m not sure how to deal with what comes next because I don’t know exactly what’s coming next. Or, perhaps I do but I want to deny it.

How does it happen?  With this disease, the motor neurons in my brain and spine breakdown and die.  When this happens my brain cannot send signals to my muscles.  Because the muscles no longer get a signal they figure they’re not needed anymore so they decide to pack up and leave.  Atrophy.  One would expect a uniform departure of the muscles.  But, in fact, it’s quite random and disorderly.  It’s somewhat fascinating to watch this muscular behavior.  Like a bunch of kids playing dodge ball.  Starting out as a large group dashing about the flying balls.  One by one they are picked off and removed from the game leaving fewer kids with large spaces between them.  You start to see divots under the skin as certain muscles have dissolved away.  It’s then you understand that biceps, quadriceps or calves are not one big muscle but layers of individual muscles.  Each one independent but participating as a whole.  Each one decreasing at its own rate. Some faster than others so that the muscles that once filled out your thighs or arms now look like a loosening coil of rope.  Sinewy and stringy with empty voids where the muscle has completely disappeared.   A melting glacier with deep crevasse opening up to the surface.  Soft boulders of fat that once uniformly held onto those melted muscles now clump together and float across the sub skin landscape.  The skin loosens and drapes itself over the stripped bones looking like an oversized sweater.

What does it mean for me? There are the obvious physical ramification.  My legs have weakened at this point that I cannot walk without use of metal braces to stabilize them and give them support. I use a walker to keep me from stumbling. My knees do not have enough muscles around them to keep them from hyperextending backwards. I’ve worn the tips off of numerous shoes as I do not have the strength to lift my feet and keep my toes from dragging.  Walking feels like a stroll against the current in fast flowing river filled with slippery rocks.  My walking pace has slowed such that I constantly have the theme song to the Chariots of Fire running through my head.  Many epic trips to the bathroom nearly ended in disaster.  Much frustration has boiled as I spend 10 minutes walking from one side of the house only to realize I left something on the other side.  So now I’ve resigned myself to using a power wheelchair.  Trying to get up out of the chair is a battle with gravity.  It’s amazing to discover how many muscles go into a subtle movement like trying to shift your position in bed.  How many times I’ve had to accept whatever position I’m lying in and convince myself that it’s comfortable because I can’t fucking move.  My arms have withered that a simple task like holding a book is likened to power lifting.  If I try making a stir-fry the constant mixing makes my arms tremble as if I was handling a jackhammer for an hour.  But the worst…  To lose the opposable strength in my thumbs… that which makes a human a human, that’s a tough one.  As I type this I have only one adequately functioning finger on my left hand.  Do you know how many necessary letters are on the left side of the keyboard?   (All the letters in the word “necessary” are on the left side, by the way) I no longer have the small motor skills to use a screwdriver or a can opener, a knife and fork or turn a frikin’ doorknob.  But the most frustrating is no longer having the finger strength to pick my damn nose!  Don’t even get me started on wiping my ass!

What is not so obvious are the mental ramifications.  Look, I will admit that I was pretty vain about my body.  I felt good about my physical state as I entered my 50’s.  My weight was stable at 170. I wore the same size pants since my 30’s. I was doing yoga four times a week and my vanity had no issues taking a spot towards the front of the class. (Although I was not the guy taking off his shirt) I was swimming laps with my daughter twice a week. I walked numerous miles every week. Did highly physical construction work.  Damn! I felt great and thoroughly enjoyed the surprised looks when I told someone I just met that I was 50-something.  So much of my identity, what made me feel like a man, husband, lover, father, provider, builder were centered largely around my physical abilities. My hobbies and life were about  moving and using my hands.  I reveled in being a home owner who could remodel his own house.  Dig up the yard and reshape it. Being Mr. Fix-it or Move-it to my neighbors and friends. Take my family camping and play the role of great outdoorsman.  Having strong arms and hand to hold and caress my wife.  All that has been stripped away.  My manhood, activity, intimacy, helpfulness, and self-reliance… all stripped away.  With that, you can come to imagine my state of mind.  Imagine waiting for your spouse to help you dress.  Imagine constantly asking someone to carry your plate of food the three steps from the kitchen to the dining room.  Imagine having to ask a passing stranger to zip up your jacket. Imagine waiting in a public bathroom for someone to come along to open the door for you because you can’t.  Imagine being looked upon by the huge line of people waiting on you at the checkout because you can’t pull your debit card out of your wallet. Imagine eating dinner with some friends at a restaurant self-conscious of how you get the food to your mouth. That is my state of mind.  A loss of confidence. It is one thing to feel insecurity when climbing a mountain, it is another to feel it when stepping out of your house.

As I write this it dawns on me that this is probably what most elderly people must feel. The frustration of looking back at yourself in the prime of your life. Wanting to still prove your usefulness, to be helpful and independent only to be betrayed by your body in its current state.  The fear and uncertainty of heading out into the world. So think about that next time you see an old lady holding up the line or the old man with a walker holding up traffic as he crosses the street. Instead of getting frustrated with them maybe give them a smile or even a helping hand. I can tell you they’d appreciate it.

[Dagmar]

Those are interesting observations Chris. Question – – have you considered daily gentle exercise to help prevent muscle atrophy. Like chair exercises or doing them on your bed mattress? Even having someone help you with passive range of motion movements can be of help.

[Guy Castonguay]

The biggest is losing my speech and having to depend on someone who doesnt think like me or priortize things by importance.
Being the house owner i see things differently and do things that need attention like registering for a new doctor rather than cutting grass. Grass can wait but getting in to get on a dpctor waiting list is number 1. Grass can wait a few hours.

[Carolyn Barry]

Guy, I can relate to what you said, in that I too, have struggled with now needing to depend on someone who thinks differently than I do, and doesn’t see things in the way that I do. I admit I am a particular person, and have always had the “luxury” of doing things around the house, as well as things for me, in the way that I want to. But now, being that I am dependent on someone doing them for me, it seems that often it’s done in the way that they would like, which is usually opposite of my way. Of course there’s no right or wrong here, it’s simply my feeling that I can’t lose another part of myself. And to be told it “has” to be done this way or that, when I disagree, causes me to feel like it’s just another loss, in light of incredible and increasing losses in my life. I am still me, the same person inside, and that will never change.

[John Ceriotti]

The biggest challenge living with ALS is time management and wanting to do more than I physically can do for my primary care giver my wife and my family here at home. Also it is adjusting to a new and accommodated position for me with my company and not being able to inform business partners that I have worked with for 14 to 30 years of my condition. I have told a few confidentially and ask for them to keep it to themselves.
One last challenge would just be not having the ability to just go to the bathroom or just go to the store or just let the dog out or take the dog for a walk… It does get a little frustrating but after two years since diagnosis and now for 13 months receiving the research drug Toferson, the open label extension has provided me with a significant reduction in any progression of the disease so I feel like and can do many more tasks while being much more motivated to do so!!

[Lynn Goldberger Gross]

Getting up from a chair.  Any affordable good recliners?  Help

[John Ceriotti]

Lynn

I found one on Amazon actually and it worked great for about 4 months.  In fact I started sleeping in it and have been sleeping in it now for over 13 months.  The challenge that makes me hesitate to fully endorse the chair is the fact that I have had to obtain two (2) new wired controllers for the heated-vibrating controls.  It does well lifting me up (especially when I was still walking with a walker and now transferring onto my power chair or shower/toilet chair), and is great for sleeping with my BiPap machine.  I just had to get them to send another controller because the heat and vibration aspect of the chair would just come on in the middle of the night.  Kinda crazy.  I believe the best chairs are in the $500-$1,000 range if you want everything.  This model was $409.00 and I bought an extended warranty.  Here is the chair and again overall good for ups and downs and waiting for my engineer son to be at home soon to help replace the necessary side and controller for heat and vibration which is a nice feature.  Here is the model info…good luck!!!!

MAGIC UNION Power Lift Massage Recliner Faux leather Heated Vibration with Remote Controls Wheels for Elderly Catnap Sofa- Brown

[Dagmar]

Lynn, (and interested pALS) “getting up from a chair” used to be a huge effort (and often impossible) for me too. Interestingly, I challenged myself to strengthen my leg muscles by doing 1 or 2 air squats every day. I thought if my muscles didn’t respond, I wouldn’t be any worse off.

That was 3 years ago, and I’m up to doing 40 chair squats/day – – and can get up and sit down by myself with only my walker to steady me. I wrote about the whole experience here: https://alsnewstoday.com/columns/2019/03/12/squats-als-leg-strength-exercise/

A new, comfy recliner is always great, but if your husband is willing… encourage him to keep using his leg muscles (even a little bit helps).

[Mary Kay Polashek]

My biggest loss is not being able to do most activities so I get bored. I’ve had a feeding tube since Sept 2021 and miss eating and drinking but now it’s the norm for me. My wonderful husband takes incredible care for me and I am blessed.

[Dagmar]

My friends at Your ALS family have just produced a great online resource (guide) to help with adjusting to living with ALS. Many good categories to select from:

https://www.youralsguide.com/als-daily-living-guide.html

I thought sharing this with you all would be helpful.

[Diane Reardon-Jorge]

I am amazed at what you are doing and hope I can inspire my sister with several of your e-mails. She was diagnosed just before Christmas last year with bulbar ALS and it has progressed really quickly. I help as much as I can but she lives a ways away, and her husband is her primary caregiver. Thank you for letting me into the group, and has been a great help, and Dagmar- you are an inspiration! With love, Diane Jorge

[Cheryl Teribury]

The biggest adjustment I have had to make is taking care of myself.  I am no longer able to do anything for myself.

[Dagmar]

Yes, Cheryl… loss of independence seems to be the common feeling in this discussion thread. It’s funny how when we are growing up we fight to learn to do things for ourselves. Then as adults, we yearn for things to be done for us (both by mechanical means & human; for example, top-notch service in a hotel). Now we want to do things by ourselves again. Interesting “catch-22” situation.