How Do People Deal with It?

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bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
...losing parts of yourself on a daily or weekly basis? Today I wake up to notice a very small, but noticeable part of my left hand that has some atrophy. Have never noticed it before. It bothered me though....a lot. Just like when I've tested myself for push up strength or any other strength test. It's just depressing.
Any input appreciated.
 
Bear, I am not sure what to say. Sometimes when I see this in my pals I feel a very deep grief. Other times he seems oblivious to it so I don't comment on it. Either way it sucks. Interesting that you mentioned the hands. Steve has lost a lot between the thumb and index finger, thru the palms, and his hands are almost delicate now.
 
It's tough no doubt. My hands were pretty well involved in everything I did and the loss of strength and the atrophy (funny enough it's the spot between my thumbs and index finger are where I have lost the most) does get to me sometimes. What I do to get past it is just figure out a way to go ahead and keep on doing what I want/need to do. For example turning keys by placing them between my fingers instead of finger and thumb or using braces to enable my self to keep golfing and so on.

I find that focusing my attention and disappointment on adapting instead of the loss of things not only gets me past it but gives me a way to keep on going since I now have a way to accomplish what I want to do.

Of course as more permanent and disabling things occur I'll have to adapt in different ways and spend time focused on things I can do in order to get by.
 
You say this like it was put to you as a question. Try not to look at what you are losing. Look at what you can still do, and do it.
Vincent
 
I noticed it first in my left foot then my hands. just the other day I noticed the outside of my right knee was all indented and skin was hanging. I use to be a very good runner - it hurt to see. To deal with it I mostly just try and stay distracted by things I can still do. It takes my mind off of it but does not really help. Unfortunately there is no good answer or way of coping we are on a steep slope that will end with us physically loosing all we have. Some days are just harder than others. I am sorry.
 
Oh Bear, I right with you on this one. I really need to get my energy together and slow down my transient sked to get to Barrie for coffee.

I am guilty of the same thing. Every day, I do a "check" and I notice things and it depresses me. I noticed last night that certain moves I could do in bed with my legs were no longer possible. As soon as I woke up this morning, I checked again hoping it was just exhaustion, but no, there is another loss. Yet a few days ago, it was still possible.

I think for you and I, and most likely many others on this site, is that for the most-part we are still functioning relatively fine and, because we have no partners/caregivers we fret over each change, knowing we are going to struggle to make this work alone. (Just my thought anyway)

I'm trying to focus on what I can do. I am also clinging to the hope that by some miracle, there will be another diagnosis. Though I know that's unlikely after reading the clinic notes Sunnybrook sent to my GP and how quickly things have changed since June. I chalk that up to too much exertion and stress. Not a good combo.

I am trying to focus on things that I can still do and not let the depression become too much. Like tripete said, there are good days and there are bad days. Last week, I had many bad days. This week, I'm working hard to enjoy things more. Similar to tripete, I was an athlete and very fit right up until this damn disease. I had a very toned body. Now when I look, I see sagging skin on my legs and arms and boney knees. Now I don't look.

I remember as my body changed my ex would say "you used to have nice arms and legs." Every darn morning when I would come out to the kitchen for breakfast, I could see him staring. If we were talking, he would be staring at my arms. I think this made me even more self-conscious and hyper alert.

Anyway, I'm rambling. I'm still working through the same issues. But I am finding just doing things that I can still do is helping. I can't fix my body, but I am trying to work on my mental attitude. Being able to control something is making me feel somewhat better.

I'm exhausted at the moment and I'm trying to make this week a "rest" week. How about we aim for coffee next week. Just give me a couple days notice as to what day is good for you. Vince is in Barrie too. Maybe he'll be interested in coming as well.
 
That is why this disease is so difficult. You grieve each small loss along the way as much as you grieve a big loss. My Pals discovered this week that he can barely sign his name. When I saw how he was struggling to make the pen move, I felt punched in the gut. Even though you know the losses are going to come, you don't know when, nor which loss will appear next.
 
@Vincent - You are SO very right when you say, "Look at what you can still do, and do it." ALS can take your body but it doesn't have to take your spirit. When misdiagnosed for over a year, we put life on hold as we waited for Darcey (my PALS) to get better. When our worst fear was realized and the corrected diagnosis of ALS was handed down, we wasted little time getting back to living. We continue to amaze those close to us with what we've been able to accomplish and do. Darcey loved being able to commiserate with her friends on Facebook. When her hands would no longer allow her to use the keyboard, we took advantage of what she still had... her voice. She uses Dragon Naturally Speaking to do emails and Facebook. It opened her world back up. Darcey loves to cook... but obviously cannot do so any more. So I'll give her a night to cook. She picks out what she wants to cook and I make sure we have all the ingredients. She then drives her PWC into the kitchen and begins to tell me what to do. I simply become her hands... acting to her instructions as her own hands once did. Is it as good as it once was to actually be able to cook? Nope... but she'll tell you... it is a whole lot sweeter than bemoaning what she's lost.

Her neurologist suggests that she's quite likely in her last months. But we still get up every day and make plans for every tomorrow that we can. Next week, we'll return to the beachfront condo... for 2 nights... as it requires that she sleep in her PWC. And if that works well, we've plans to go back the next weekend for 3 nights. And Joe Bonamassa is going to be performing about 5 hours away from us November. So were already making plans for how we'll power the trilogy for the trip and the evening performance. And though she's not planning on joining me to see David Gilmour in New York next April, she is determined to stick around long enough to hear all about it. Yep... we've go things to plan and things to do... and no time to dwell on what we can no longer do.

If Darcey and I could wish you one thing... it would be that you could grab hold of all that is in every tomorrow that you still have... and that you could squeeze the good and the best that each and every one of those days still has to give.

And that, is how we deal with it...

Jim & Darcey
 
These are very helpful responses, especially from people who are going through the same thing, or have other loved ones going through it.

Here's the thing with me: Up until March, when I first diagnosis was made by a general neurologist, I never noticed a single damn thing wrong with me, other than my left leg being weak. Then, about a week before the diagnosed was official confirmed at Sunnybrook by a specialist, I tried to do push-ups (I could do 15-20 a year ago) and realized I could do ONE. What a night that was. I panicked, and a voice inside me told me I was dying. But when I would look at myself in the mirror at the front, I looked (at still look) relatively ok. Since that night, I have been checking almost daily, and some days notice no changes, and some days something small, like yesterday.

This is an ugly, wretched nasty cruel disease, and I don't know how any God could possibly create something like it. At the same time, I also know that many others have it, that there are many other nasty diseases out there, and that even if I don't understand the reason for it, there has to be some reason. That's at least my belief system.

@LifeEnthusiast: I think it's true when you relatively early in the disease to accept this because you have so much to lose depending on the course of the disease. I also think it's true when you don't have a caregiver/partner there as well to talk to regularly...that said, I have a friend who has been an incredible support through this process, and I'm able to talk to her about these types of changes. It's not the same as a wife/husband you live with, although it's better than no one and it definitely helps to get it out. Coffee sometime next week works for me. I'm off on another "bucket list" trip to see an old friend in the NWT although don't leave till Sept. 1. As depressing as it sounds, I want to do all the travelling I can while I still can...plus it's a great distraction. I've had a couple of coffees with Vincent and it's been very helpful....sure, would be happy to meet with you and him in Barrie.

Thanks for the input everyone....@gooseberry - "deep grief" says it all.
 
Bear, Here's my viewpoint on this gruesome subject. It's coming from a man who has always been an athlete. I hit the ground running and kept on running till I graduated from Arkansas A&M on a football scholarship Six years in the Marine Corps and a career in Law enforcement afterward kept me always in tip top shape. That doesn't happen by accident.....you gotta work for it.

I am taking MY MIND, my will power and my unflappable faith in God, and applying the same principals I used toward training and conditioning toward my ALS. Winners have a common trait. They are mentally positive. That is my most useful weapon in my personal war with this disease. The way I see it is that all of us have only two choices: 1. Cow down in a pitiful ball of self pity and wait for the end. or 2. Demonstrate the power of our character by interacting with everyone in an upbeat and courageous manner even as we slide toward death.

My sense of humor is my second weapon of choice. People expect tears and negative input from me. I give them the opposite. I'm not cracking jokes anymore, but my biggest smile and two thumbs up is my trademark nowadays when anyone asks, "How are you doing?"

Underneath it all my true source of power is my Christian belief system. I liken this disease to Satan. He wants to break my will. He wants me to cry out in pity, cursing the higher powers that caused this calamity to occur in my life. God however is my shield. I will never be beaten while I call upon him for my strength. Sure, I know I'm dying, but that doesn't make me a loser. We all die. I know what's waiting for me across that old Jordan ford. On the way, though the road is rocky, I will hold my head up and show the world....I chose to laugh in Satan's face. It's my hope that using me as an example my slip stream will carry a few others that were heading in the wrong direction....over with me to glory. Makes me wonder if after all....that might be part of God's plan?

God Bless Us All.......................Glenn
 
This has been such an interesting thread. It will be hard to address everyone. JiminVa, I think what you are saying is so true. And you and your Darcy are handling this amazingly.

Broken Down Cowboy, I see your point too. And outside of this forum, I am known as the positive person. Ridiculously positive in fact. I'm the "it's all good" person. And deep down inside, I am that person. And I am not a quitter.

That being said, I get Bear too. Our journeys seem quite similar. It was my first neuro who suggested something was wrong before I even realized there was an issue. At that point, I was still swimming one kilometre and riding the elliptical machine 20 mins every day. And despite being a woman, even in poor shape I could do at least 25 push ups with absolutely ease. Then over a few months, I could last 82 seconds on the eliptical machine. Push ups? Forget it. Not a single one. That's when I started to take things seriously.

And like Bear, I still look good according to everyone. But like DrewsMom, my looking good isn't anything like it was. I see the physical changes unlike any new neuro. I was fit. And I mean FIT. My ex could see it right away. I hate the sight of my physical body. And likewise, I realized when filling out a form at the clinic just how miserable my handwriting had become. At least because of that, the attending neuro thought I was 41 rather than 47. LOL.

So I am struggling in the inbetween of what everyone has said. I'm slowly getting my "happy" on again. But then I feel like Bear, watching and waiting and worrying.

And deep down, I think that the worrying at this stage is more so because there will be no spouse or loved one to care for me or help me make decisions or cook or anything. So trying to find the balance of the here and now and the future, is difficult to push aside. Frankly, I find it overwhelming.

And the days that I feel relatively normal and I'm talking to people, usually strangers, I forget. When I forget, I make plans to move away, do this, do that, and then it hits me -- I won't be doing any of this or that. And there's no caregiver to help make it happen.

It's like there are too many emotions and too many realities happening at the same time.

Yet, despite all this rambling, I am holding on to faith and finding some happiness in each day. Slowly, I'm not suffocating in worry anymore.Not sure this makes any sense at all. Sheesh, a lot said for a normally very private person.
 
Those are great words of wisdom, Glenn. Maybe what you mentioned is part of God's plan. As for me, when in a state of faith, somehow I know that there is a reason for what I'm going through, I just don't know it yet. And maybe that's how it's supposed to be.

As for this gruesome subject (...and it is "gruesome" - this is the type of experience you'd see in a horror movie) I need to talk about both the good and the bad. As related to what you said LifeEnthusiast, I can't always say everything is all right because it's not always all right. Going through losing the kind of strength you've lost is difficult....really difficult and I think it's healthy to share it as it is for me. Talking about the good and bad is real. I can also relate to not having a "wife of 12 years" by my side...and I think that's what really drives me to push and push to try everything I possibly can to slow this thing down in the desperate hope they will find something.....soon.... however unlikely. My biggest nightmare, what keeps me awake at 3am are the 2 words: Nursing Home. Sure, I could ask my brother or father or even a friend to care for me, although for many reasons that's not the best option. That being said, I know there are home supports available that I have already applied for.

So...to end this off on a more positive note, and to reference JimInVa (and I really liked what you wrote - an incredible inspiration), I know this thing can't take away my spirit. I've been going to AA meetings now for many many years - I will be sober 20 years as of this October. So I'm well versed with "Just for Today" "one day at a time" and "But for the Grace of God" I went to a meeting tonight, and after leaving, I felt more connected to my spiritual self, not my physical self. And when in that head space, the atrophy on my hand I noticed yesterday seemed less significant, and I was aware of what my left hand was still capable of doing. I will have good days and bad days ahead just I'm sure like everyone else on here will (....unfortunately for you guys though, usually I just talk about the bad ones :)) It does help to talk this stuff through though on here, because when I talk with my friends, even the best ones sometimes don't know what to say because they haven't lived the experience.

God Bless.
Barry
 
I realize anything that I might say will mostly be platitudes as I don't have ALS, but I will wade in anyway. My Tim is the most amazing person I have ever known, all be it a fairly short time having married July/11. I was the one that noticed the initial changes, and then sent him to ask his doctor to check him for ALS. He too like so many PALS was an amazing athlete and had abs that any 20 year old would envy. Initially after he was diagnosed he cried, mostly because he finally found a piece of happiness and did not want to die. After I moved him here to Canada from Texas, he became so determined to live his life to the fullest. He was told by one of his specialists that ALS was aging on steroids, and in many ways that is true, except that he has lost the ability to breath on his own and is paralyzed from the neck down. We both believe that God brought us the 2000 miles together, because he knew what we both needed. I needed a partner that would affirm me, and bolster my faith, and he needed a partner who could manage all that was going to come down the pipe. So, we are each other's support team, but we do have our tearful day, but thankfully they aren't usually at the same time. Tim mourned the loss of his hands the most, but is so thankful that he is still able to speak clearly inspite of requiring a ventilator. We have the most amazing church family that have stepped up and help out in too many ways to mention in this thread.
Humour is our greatest weapon, and we both love to joke around and it is that humour and positive attitude that draws so many to help Tim. Now Today I was getting down onto the floor to lay on my bolster and stretch my shoulders, and on the way down a fairly large fart slipped out. Normally that isn't a big deal at all, but Tim's daughter and boyfriend were visiting and they heard it. Then after my stretching I just about couldn't get up off the floor as my knees are so weak these days, just from plain old aging. Push ups? My right shoulder creaks and pains me too much to even try. I remember the days that I could do front or back flips on the floor landing on my feet, skiing double black diamonds until my legs burned, but they hung in for a very long time. No, I don't have ALS but I am aging, and even I notice the things that used to be easy that I can't do anymore. But I will probably live into my 90's if my grandparents are any indicators, and I will have to live all that time, feeling 20 in my brain, but unable to do the things that I want. But my plan is to learn new things, that I can do and do them. I am a hyperactive person, and was an adrenalin junky but I think God is training me how to slow down and see the beauty that he created for us to enjoy, and Tim in pointing them out to me everyday. I am sorry that some of you don't have a parter with you, and I dread the days that I will be alone again, but what are my alternatives. I chose to keep my head down and my butt up if I can, and push on, and one day I hope to hear "Well done good and faithful servant" and I know then that those hard times were only a blink, leading me to somewhere glorious.

God Bless, and I will be praying for all of you.
Paulette
 
After all that has been said, such spectacular advise........
I'm a simple person with a simple thought...

Find a way to live each day to its fullest. Be happy, find happiness. It is easy to find things that hurt, anger, sadness.... But focus on your happiness and LIVE! LAUGH! LOVE!
 
Great advice everyone. Sending smiles and love. x
 
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