Scared

[Sam63]

Morning all,
I'm scared and don't know what to do you think. The past couple of days my neck has been sore I attribute it to looking down at computer and straining muscles but it's still sore. Is this a normal progression or am I working myself up for nothing. I also woke up at 3am this morning mouth dry tongue stick to roof of my mouth ( normal lately) but my tongue felt numb. Needless to say there was no sleep happening I was awake and my blood pressure was through the roof I'm sure. Haven't told my husband yet I know it would freak him out even more. I catch him watching me and constantly asking me if I'm ok. I know that he means well but can be unnerving. Thanks for listening

 

[cheerleader]

My hubby had a heated bean bag on his neck most of the day due to soreness. A neck brace might keep some of it at bay- he refused to wear one. Remember, as the nerves die, it becomes more of a strain to hold that heavy head up. Another option is to use a laptop from a recliner to take the pressure off. Or the obvious- less time bent over the computer. It's hard to change what you are used to. Good luck. Donna

 

[KatB]

Hi Sandy, I was diagnosed with Bulbar in February this year and am experiencing the same things you are. My symptoms started January 2014 with slurred speech, exhaustion with strenuous physical activity, in November 2014 I stopped speaking and now communicate with an app on my iPad or iPhone. The dry mouth, tongue stuck to the roof of my mouth has been one of the biggest concerns for me along with the odd sensation of numbness. In some past posts on this forum I found where others described the tongue like had been burned. Aaaahaaa! That's exactly what mine felt like, I had been having difficulty describing the sensation but when I saw that I said that's what it is, it feels burned, the tastebuds are elevated and food clings to them. Yours too?
I told my pulmonologist about the dry mouth and asked about a chin strap, she suggested a stretchy headband. It works for me but isn't a 100% fix, (no more stuck tongue) at least it keeps my sleep from being interrupted and my Mind from taking off into unstoppable senerios.
The feeling of (concerned) eyes watching my every move is new to me too. I encourage you to be open with your hubby, tell him what you are experiencing, talk about things you've not talked about before, trust, we may be dependent on our CALS for quite some time. I've been concerned how am I going to giveback to him, how am I going to respond to him when he is trying to take care of me. Well, the lesson came. We went to visit family, and were staying in an RV. (Not much space). In the night, I felt sick to my stomach and my intestines were not happy. I got up to go to the restroom, fell (no memory of how) at the end of the bed, in front of the bathroom door, scraping knees, forehead, my left hip, shoulder and neck were sore for a week, nothing broken, but I left a mess on the floor. I was down, it was not one of these jump back up hoping noone saw me. The choice was not mine, I had to rely on him, so I knew, not until a few days later that I can surrender and trust because he loves me. They need to know what to expect so they can handle it. Thank you Sandy this has turned into a therapy session for me. I pray for understanding and guidance through this trying time for us all. Kat

 

[anderkling]

I can't speak to the sore neck, but severe dry mouth and tongue sticking to the roof of the mouth: this is typical of people who suffer from ALS. I have limb onset, and ever since it started I have experienced severe dry mouth during the night. My tongue feels like sandpaper. I wake up several times during the night because of it, and I drink a few sips of water, and spray my mouth with biotene spray (available at the drug store). This helps and I'm able to get back to sleep. I know it can be tempting to see every physical aberration as a new symptom of ALS, but it is not always so. Your sore neck may well be the result of computer use, sleeping the wrong way, etc. I know it's not easy, but try not to think of the worst case scenario right away, because of the fear and anxiety it brings.
Charlene

 

[Atsugi]

When my wife had ALS, I never left her side, even in emergency rooms. Kept a video monitor on her whenever I was in another room. Used a baby monitor to listen to her breathing all night long.

If it bothers you, perhaps you should discuss it.

 

[Sam63]

Thank you all for your input. Makes me feel better to know I'm not totally alone in what I'm experiencing and feeling. I will certainly try the suggestions you have given me, anything beats the panic that I woke up with this morning. This is all very new and the least little thing freaks me out. I feel sure my husband will be the same way you were with your wife, I can still get out and go some on my own and I can tell that it upsets him when I'm out of his sight. Although he won't tell me that. Guess I have lots to learn here and 1st is I'm not going to be able to do it on my own. Thank you all again your suggestions for me are priceless

 

[gooseberry]

We had a security system put in. It has motion detection and cameras. I did this because my pals is home alone for periods of time right now. We also got him a life alert. He thought it was overkill but I worried myself into such a state I couldn't function. I worried he would fall and not be able to get up or help and be on the floor all day. I worried he would have changes and be so scared to tell me because he would be afraid of what it would mean.(this does happen). I study my pals often because he doesn't care to discuss als. He can't deny it but doesn't want it to take anymore of our lives than it does so my watching is my way of playing detective.

 

[scaredwifetx]

wow..Gooseberry, you just stated exactly how I feel when leaving everyday for work. I imagine everything that can go wrong in my head. Steve also does not want to talk about it . I watch him and play detective as well. It's crazy how this disease takes over our minds as caretakers. As I was sitting here typing this I heard this funny sound and looked over, Steve was sleeping sitting straight up with his mouth wide open and making this weird noise. Everything worries me anymore. I think it's worse due to the fact that I leave him alone all day. I pray for everyone on here. We all have to find our own kind of strength and each one of us have so many issues in common and at the same time so many different issues. I may be exhausted, sore and downright unstable right now but a part of me is growing each day and my life going forward will be forever changed. I am grateful that I can share my concerns here and be understood.

 

[lgelb]

Deb, you can put an app on a smartphone or computer, whatever he uses that has a camera in it, and monitor audio or video or both from work...I also noticed a new FreedomAlert-like button that gets power/instructions from a nearby smartphone, so all he would have to do is push it. You can find it on line. Like some of the other ones, it (well, the phone) calls people in order instead of 911. So basically it's using the Net or cellular instead of a land line.