Is this more progression?

[lisa-ryan]

<p style=”text-align: left;”>Sorry for the typos, I couldn’t figure out how to edit it.. I was trying to say that the second opinion was not a second opinion that he just went by what his former colleagues have said , so I don’t know if my regular Neuro would see me in September..</p>

[Dagmar]

Lisa, a couple of things jump out to me – – first, you are pushing yourself. If your body is telling you that it needs to go slower and rest, why push harder. In any circumstance this is unhealthy. But with possible ALS, pushing yourself to the max. will only increase your brain’s release of cortisol and doesn’t give your body and muscles time to recover. Pre-ALS, I could get by with 7-8 hours of sleep. Now I need 9.

If you are noticing changes, this “could” be progression or, you are just becoming hyper-aware of anything happening in your body. Are you overusing certain muscles, or avoiding moving them altogether?

And why wait for a diagnosis to change what you are doing now? Having the doctor pronounce you have ALS won’t change what is generally recommended: slow down, reduce your stress, have someone help you, and practice self-care.

Planning now for your daughter and grandkids (as hard as that will be) is what you need to be doing now. I think that if you start removing the layers of your stressors now, it will help your body deal with what it is feeling.

[lisa-ryan]

Hi Dagmar, my daughter has a late stage cancer and I have been with her every moment she needs me for her treatments, she is petrified, has never been sick in her life and is afraid of needles.  I have been spending early mornings and long days with her along with trying to babysit the 3 grandkids one weekend day per week, i am also moving to a downstairs mainfloor unit where I live.  I am exhausted but i don’t know what else to do.  I can see in the last month since her diagnosis that my body is just going downhill and the symptoms are progressing but I don’t know what else I can do, its my daughter, shes only 35 and I can’t lose her so I am putting her first because I love her so much and I need her to be around for her kids so if all I do helps her get through this harsh treatment plan she is in then it’s just what I have to do.  I know I am making my body stressed and physically it is all too much but I am lost in grief and worry and misery.  I am her rock, I am calm and focused and very important to her care.   I am just worried if I do have a slow progressive MND then I might be making it worse….I am just broken in pieces right now…

[Amanda]

Lisa, you clearly have more on your plate than any one person should have to handle. That being said, you still have to handle everything. In order to be the best version of you for your daughter and grandchildren you must take care of yourself first. Have you reached out to any local non-profits for help? Have you considered talking to a counselor or therapist?

In regard to a second opinion, everyone is entitled to that and appropriate medical care. If you are not getting the answers you need or the help you need, can you go through your insurance to find other medical professionals?

[Deleted User]

It is so easy to let this thing consume you, and so hard to get answers that relieve that stress. Yes, this is happening, and no, your neurology guys are not positive about it. Hope for the best, and prepare for the worst. You know a lot more today about ALS than before, no? Knowledge rules, and so does patience. If you allow yourself to stress out it will cause weight loss, depression, anxiety, and everything you see will become attributable to ALS. It is natural for people to do that, for me, and you too.

Knowledge then will lift you up over that burden because when you know what it does to you, you can change it. Whatever is going to be will be so with our without that stress, so let it go. If it is ALS, do not let it destroy you! If it is not ALS, it wont matter. Relax, spend time with the kids or grandkids. Do what you enjoy and let go of the darkness. Find joy and replace the stress with happiness.

You deserve no less!

[Deleted User]

GO PLACIDLY amid the noise and the haste, and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons; they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter, for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.
Be yourself . Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
By Max Ehrmann© 1927
Original text

[lisa-ryan]

Hi John, wise words and I wish it were that simple but it just isn’t this time.  When your child is facing a beast like cancer is, I am trying to keep her calm and make her fight when it is so hard.  She is fighting but I am the person she looks to for support.  I just thought that if I knew for sure I had ALS, maybe I might ask if anyone can help out in any way and then I wouldn’t feel guilty because of putting myself before her.  Without a diagnosis I don’t feel like I should limit my efforts even though I can see it is not helping matters.  When I think about my post, maybe it is just for not because I guess I figure that if it is ALS, I know my fate so why not help a young person that has children and everything to live for 🙁  I am so devastated, I cannot believe reality right now.  The thought of her not making it is so overwhelming, not that I would ever show her my worry, I do not.  I am very sad, tired and worried, stressed.   Thank you for the beautiful words….someone was very very wise, it is very good helpful words of wisdom but in this case, I feel helpless to change my outlook.  I can try to just accept that the universe has a purpose and a reason for everything but it is damn hard right now to get through each day without pain and struggle.

[kathleen-b-katie]

Lisa,

Thoughts & prayers for you, your daughter & grandchildren is what I can offer best…and I truly will do so.

I know the angst you describe regarding the body changes…and lifestyle changes…and the Neuro dr.’s ‘hedging’ (the most frustrating, unexpected piece)…tho’ I also cannot imagine how it would be to ‘go to work’ every day and know you have to tell someone such a mind-numbing diagnosis!  ):

I too have a couple grandkids–ages ‘nearly 4’ and just 4 months old–so I can relate to the stress of the caregiving role that is SO special, yet so draining!  However, I have figured out (since May/June), that if I try to ‘catch/do rest more’ on the days I am NOT with the little ones, it makes the time with them MUCH better–and the ‘nearly 4’ child LOVES to be my helper!  (Correct, I am leaving many things ‘un-done’ in my own home…which I am literally telling myself in a phrase, to do as a ‘stress reliever’–but I made that decision as my 1st step in ‘self-care’ and it did help my body actually!  (safety of self and grandkids was my motivation to be better rested…PLUS, I DID learn from a good nutritionist that keeping (quality) calories & proteins UP would also assist my body to help itself with muscle use needs, etc.  –AND, my primary care doc wrote me a script for PT, (even before I had a diagnosis, because I mentioned to her it looked to me like my left leg calf was smaller than the right leg calf, and my foot was ‘making noise’ when I was walking.   In short, a well trained PT  (watch for initials DPT, OMPT after the name, check out references?) can REALLY help with how to move and use the body more efficiently AND safely.   Hope you and the entirety of the situations can experience some peace of mind and heart in the coming days and weeks…

…Smiles to & from daughter and grandkids (or even to your own reflection in the mirror while saying “yeah, right!”) can be the spot of glow to remind that YOU matter SO MUCH to self and others!

 

 

[lisa-ryan]

Thank you so much Kathleen I really appreciate the kind words and the good advice. I have been trying to do what you are doing and saving up my energy so I have some for the kids but right now everything is spread very very thin my resources are just dwindling. My muscles are constantly fatigued and aching and the atrophy is progressing quicker.

I have also learned by not having a choice to clean much much less than I used to I have let so many things go I’m actually glad that my eyesight has got worse for up close so if I don’t put my glasses on and I don’t see all the dust lol. But seriously I think I have done everything I can except take care of my own body I just don’t know how to balance it right  now.

Thank you very much again for the well wishes it is greatly appreciated.

[meredith-reekers]

Hi Lisa,

Just my two cents  (I’m pre-fALS and worry about cramping a lot), you might want to look at the possibility of an electrolyte imbalance. My neuro suggested that when I complained about a recurring Charley horse in my right calf. Supplementing electrolytes relieved it.

I hope you feel better soon,

Meredith

[lisa-ryan]

Thank you, I’ll look into that or just supplement anyways!

[lisa-ryan]

Hi all, my muscles continue to shrink, my right thigh is very thin my wrists are very tiny and bony, my forearm muscles are so concave they have such an odd shape it just goes in and out in and out up to my elbow. I noticed when I use my muscles too much I have muscle pain for days and days sometimes a week and then I find it hard to recover the energy back into them I had an MRI on my cervical and thoracic spine a week ago I will get the results next week and I’m going to contact my Nuro once I get the results of this and tell him about my weak diaphragm and whatever comes from the MRI.  I am wondering if the MRI shows that my muscles are atrophying, would this be another clue for my clueless Neurologist?  I am so fed up with this I have just been ignoring the progression but the breathing when lying do we n is getting more bothersome..

[david-crellin]

Hi Lisa, I feel for you. Thankfully my family is fit and healthy.

I was diagnosed March 2020, just as Covid changed our lives a bit.  From early on I had to rethink my approach to exercise. I’ve spent a very active life and the ‘No pain=no gain’ mantra I’d applied throughout my life failed me. I still managed to walk 19 miles the week I was diagnosed! But now I compare my muscle strength to rechargeable batteries: all of a sudden my energy drops. No amount of exercise can build muscle where ALS has started to take effect.

I had cramps early on, but as muscle bulk has decreased so have the cramps. I still have fasciculations all over my body though.

I conclude that this isn’t one disease: it’s a syndrome and everyone experiences it differently.

Best of luck with your neurologists. Mine is described by other medics I know as lazy. I now have one of the leading ALS consultants on my side and I’ll see her and her team this Thursday.

[len-jax]

Hi Lisa,

I am so sorry your are going through what you are at present.  It seems to be grabbing you and shaking you to your core, which is understandable.

I was reading your post and your replies to some of comments that you made. What you said in two sentences in the middle of your reply 2088 was telling and might be the key to the anxiety of what you are going through.

You said: “I just thought that if I knew for sure I had ALS, maybe I might ask if anyone can help out in any way and then I wouldn’t feel guilty because of putting myself before her.  Without a diagnosis I don’t feel like I should limit my efforts even though I can see it is not helping matters.”

Based on what you said in these two sentences, are you feeling guilty for asking for extra help unless you actually have ALS?  Does that mean unless you have ALS you feel you should not ask for help?  Rest assured, you do not have any reason to feel guilt for being overwhelmed in your situation.  It would be trying to be taking care for your daughter with cancer and three grandkids if you were healthy!

Please absolve yourself of the guilt, put yourself first,  and ask other people for help.  Unless you take care of yourself you will eventually not be able to care for any one else.  You are worth it!

 

 

 

 

[Trevor Bower]

My ALS team at Duke told me to slow down.” If you keep doing what you’re doing now you  will go down faster.”  It’s hard to quit doing what you have been used to doing all your life, but you have to listen to their wisdom. You can be there for your daughter but you need to get some additional assistance from friends, neighbors and professional organizations to help you both.

 

[lisa-ryan]

Thanks David for the well wishes.. sorry you received this awful diagnosis.. funny I also came from the no pain no gain mentality, pushed to extreme levels.

I too have fasciculations all over.  Sometimes it feels like they are in my throat.  Mostly cramps are in my kegs but only really bad at times.   I wish you the best!

[david-crellin]

Hi Lisa, so much in common. It took a year for me to receive a confirmed diagnosis after a probable diagnosis two months earlier. And that’s from a neurologist in Newcastle upon Tyne, UK previously named Neurocastle when a former prof was in charge. We have one of the top genetics centre in the UK too.

If I were you I’d try to find a specialist in ALS. If you need help, get in touch with me.

[lisa-ryan]

Thanks Len for your intuitive insight… yes I feel guilt when I have to ask for help because I still think I should do things on my own if I can… which is possible but at great cost and long lasting suffering.  This is difficult to navigate CK and especially without diagnosis…

thanks Trevor for the information.  I do feel the harder I go at things, I will notice more loss…I’ll try to take the advice you have been given because  it’s probably affecting me negatively.  Finding it very hard to balance all of this.  And I’m not even diagnosed.

thanks all for your input !❤️?