Trying to cope

[DaveH]

Still not sure how to get around to different forums or see what I posted. Was diagnosed in Feb 2018. Had to quit work in Jan. Not sure what's worse the mental part of this illness or the physical part. I know everyone's timeline and symptoms are different. I have weak left hand, right leg hardly works, lots of muscle faciculations and muscle cramps. Panic attacks in the morning. Can't do physical labor or handle hot or cold. Everything takes longer and a lot of effort. The fatigue has become crippling. Would like to startt chatting with someone to learn how to cope. I read blogs on here and it helps me keep my sanity. Thanks for all the advise and positive attitudes. It's been a real struggle as it probably has been for all of you and your caregivers. Too much alone time isn't a good thing for me. God bless all of you in your struggles.

 

[Nikki J]

If you mean posted here on alsforums this is your previous thread https://www.alsforums.com/forum/newly-diagnosed/41774-newly-diagnosed.html

To find anyone’s old posts including your own look on their profile page select statistics and then you can choose see other posts or threads started by.

If you are on a thread and want to see other posts by someone click on their user name and the dropdown will give you an option to see other posts.

 

[whereswaldo]

Welcome and I'm sorry you have a need to be here. Coming here you will always have someone to talk to. It will take some time , but things should get easier. Make sure you get social security going. Read the stickies, in the yellow, they can be helpful for the journey ahead. And by all means stay safe with no falls, it can make it feel like progression speeds up for some time.

 

[ThisPresentMoment]

Hi Dave! Have you talked to your doctor about the panic attacks or support groups in your area? We may have passed each other in the halls at Mayo. I was there with my Dad in March. (He was first diagnosed at the end of 2017.)

 

[wishmobbing]

Talking about coping is step one I think. You want to deal with this and thus you'll be able to do so. Spend your alone time here if company helps. With Australia and Europe the forum is covered 24/7.

About the panic attacks in the morning.
Are they while you are awake maybe being to alone and worrying? Have you thought about seeing a counselor to help you deal with your diagnosis and your whole life turned upside down? Some find support groups most helpful, others find it very hard to see more progressed PALS, it's not for everybody. The forum here is therapist to many of us and I find it very good to talk about anything here, all the way from bathroom routines to philosophy.

Or do you wake up panicked? How is your breathing? Has that been checked out by a pulmologist?
Not saying that it's unnatural to have panic attacks with the beast in your life but there's maybe a very simple reason for these as your body might feel there's not enough air coming in when the breathing relaxes during sleep.
There's a vicious cycle of air hunger and panick that fuels each other. Panick can be helped with Ativan.
Others here know much more about it, so just my two cents.

One thing that helps me keep my sanity is getting s**t done. That may be more the CALS' side of an approach. Organizing equipment and dealing with health insurance and the likes can feel pretty productive. Shortly after diagnosis my PALS figuered out a lot of burocracy right away and I was really proud because he's a good procrastinator.

 

[lgelb]

I'm sorry to welcome you here, Dave.

In terms of energy to do the things you can, and adapt those you can't, it's always good to reconsider your sleep and nutrition. ALS puts demands on the metabolism where getting enough protein and hydration are even more important. If you don't have a hospital bed, I would look into that -- the right position, combined with a low-voltage heated mattress pad, can help cramps at night.

In re panic attacks in the morning, are you on BiPAP or how recently has your breathing been tested? You could be having difficulty breathing when you are asleep.

Best,
Laurie

 

[beauty4everyone]

USA Sat. July 07, 2018 5:09pm

Hi, Dave - I just joined, too. I posted some information about things that have been helpful to me. Check it out under my site.

Having to slow down after living an active life is challenging. Find something you enjoy doing: - table top or bed-tray size puzzles; word search or crossword puzzle books; watch National Geographic or Nova; cooking shows like The Great British Bakeoff or Gordon Ramsey, or "How to Do (something) shows; Forged In Fire teaches how to make swords and knives from scratch! I really enjoy that one because I can learn something new about an old art form.

Old reruns of Johnny Carson and others are available, too. They make me laugh! EVERYTHING LISTED ABOVE IS FREE ON U-TUBE!!

Reading is good too.

When I’m anxious, I listen to calming music on u-tube. I sit my small laptop on a bedside table and fall asleep listening. I type in "soothing instrumental - Tim Janis has some with beautiful pictures. Type in the type of music you like – something will pop-up. Scroll through and sample until you find what’s best for you.

Save things you like so you can have someone access them if you cannot.

One of my mottos is: “Plan for the future – live for today”.

Don’t know if you’re still checking your page – but here it is, in any case. Take care and may Blessings abound!