Head and Trunk Falling Over

[abbas child]

I'm posting this because the Clinic's answer to my problem is a lot like torture, and one day someone else might need help. We do not have good PT or OT in the local clinic.

My muscles are shot in the trunk and neck, causing me to have very gradually fallen sideways, with my head nearly on one shoulder--and being "pulled" upright feels as though my neck will break. I have tried the "stealth" lateral support, and the pain against my ribs is unbearable for even 30 seconds. It may have been fine if done earlier, when this was truly in the early stages.

I have an Aspen type neck brace, meaning my head doesn't fall sideways or forward. It's okay to wear for two hours, but is pretty uncomfortable for longer (great to use while traveling).

What is helping--and this is brand new--is for Phil to pull my head gently up and stroke the back half of my neck repeatedly. The goal is to lengthen whatever has become short. I have no idea if it's muscle, tendon or what. But he had my posture straight today for the first time in months. Then he brought the headrest forward and also turned it so it would gently push against the side of my head which tends to drop. I know this massage will need consistency, and the headrest will need to gradually be turned further so I continue to gain ground rather than lose it again.

 

[BarryG]

Ann, that sounds so awful and I have no idea how you manage to always be so cheerful and helpful. The massage sounds nice though and I hope you get lots of them.

 

[HalsWifeFran]

I love your solution, Ann. Phil is doing a combination of gently stretching the tight tissue and also gently stimulating the weak tissue. Brilliant!

Hal has lots of tightening and weakening in his arms, legs, and shoulders. We've noticed that after I stretch him, he can move more easily and position himself in his chair better. We have also noticed that the effect is short-lived. I'm going to try adding the massage to the weak and loose muscles.

 

[Madison1943]

Ann, my aide put a lidocaine patch on my neck where it hurts and the pain moves into my head. She thinks it's the trapesius (sp?) muscle that's giving out. But the patch really helps and I take vicodin 4 times a day too and baclofen and neurontin. Nobody is here to massage it, but the patch really helps. I get one every day. Could you try that? It might help alleviate the pain for you too. Other than that, I have no idea what to say or do. I haven't had the disease as long as you have so I can still keep my head up, but I can imagine how hard it is for you. Good thing you have such a nice Phil to help. But ask about lidocaine,....ok?
Carol

 

[Beach Bum]

Ann,
I am so sorry this is happening to you,my wish would be to solve the problem for you.Maybe the clinic should get there butt in gear and make you feel better.My prayers are with you!
Hugs Ken

 

[abbas child]

Thank you all so much! Carol, great to know about the Lidocaine patch. It sounds like you have some Upper Motor problems that didn't hit me. I've never needed Baclofen; more weak by far, than spastic muscles. You'd likely be helped by massage, Carol.

Fran, I'm glad this makes sense to you, and also glad you aren't offended by my therapist comments regarding the clinic. (And they are so nice, I'd hate to hurt them. More training is needed!) We'd let the ROM slide a while back, and shouldn't have. There aren't enough hours in Phil's day.

He also put a second pillow under just the side of my head that drops to "jack it up" in bed. Following a shower, I'm presently back in bed where the head is supported without feeling pushed. This is like going on a diet; it didn't happen in a day or a month... and won't be fixed in one day, either. I'm so glad to be getting back on track. I now see massage as much more than an extra. As I said, this isn't something that happens to everyone. So, it's good to know what's happening if it happens, and otherwise, don't worry that it's in your own future.

 

[rmstudier]

Ann,
I pray you can stay comfortable through this latest challenge. I appreciate all the sharing you do on this site. You are a great resource for me and, I'm sure, others.
Randy

 

[abbas child]

Randy, doing great here. And it helps me more than I can say if there's something I can give back. In fact, that is itself one of the blessings. Thank you, internet! As Judy says, "Some days you're the bug and some days the windshield." At least that's how I remember it. We need and receive. Then we have something to give. Ha! Maybe there's no real bug involved if seen that way.

 

[joni51]

Ann so sorry about the problems with your neck, so glad the massages and stretching are helping you get some relief. I will be sending a big HUG your way!

 

[AKjo]

Thank you, Ann, for setting such a good example of "how to live with ALS". Even when you complain, I envision a smile on your face, and it gives me hope for the future when my husband progresses. God bless you.

 

[peter57]

Hi Ann,

I hope that you continue to improve with the massage etc.

My ankles feel better and they think that they are getting a little bit more flexible each time they massage and stretch them.

Cheers

Peter

 

[arkallen]

Hi Ann,

I hate hearing of your trials, and somehow it always comes as a shock to me! Everything you write has this joyful, bright tone; and thinking of you in pain and awkward posture just is just too incongruous. You are an inspiration.

Hope things continue to repair.
Blessings!

 

[HelenL]

Anne, I'm so sorry to hear about your discomforts.... you're always so cheerful when I "talk" to you, even when you mention a complaint it's said with humor.

I'm not as advanced as you are, but with my pain and stiffness I've found that doing Reiki on myself really helps. Do you know anyone that can come and do Reiki on you? A good practioner (Master level) can even "send" it to you, though I still find that hard to believe myself. Both a sister-in-law (who taught me) and a cousin of mine are at Master level. Basically anyone can be attuned and start using the techniques. And as a bonus, it's the only time my hands get warm, sometimes they are burning hot! It's all about energy, and the person giving it isn't giving you their energy (so they won't get tired) its the energy from all around.

Speaking of energy fields, I also use magnets to help with stiffness and pain. It was the only thing that used to help with my sciatica. I have a magnetic mattress pad, a magnetic seat cushion, back pad, wrist brace, ankle brace, etc. I don't use them all the time (especially at once!) but if my back or stomach is hurting, I stick the pad there. I sleep on the mattress every night, and all 3 of my kids want my bed (and not 'cause I'm in it). I think they're expensive, but you can find them on EBay and Craigslist at times. I don't know if they'll let me post the company name, but its Nikken, and there are other brands, I just don't anything about them. If you decide to use these, just make sure that it's a strong gausse (sp?) or it won't do anything for you. I swear by my MagBoy rollers for my back especially, and you don't actually have to have it touch you, you can just spin it over the area.

Good luck, and keep up the good massages! Wish I had someone who would do that...

 

[Bad Balance]

Ann;

Before I was diagnosed, my first neuro had them doing PT on my neck. They finally prescribed a phneumatic device that is literally a "rack" for your neck. It is a bit uncomfortable, but does help. It cost me about $70 after insurance.
You have to lay flat, but it could be used in bed, I think. Anyway, something to consider. The pressure can be set in small increments.

Hope you find some relief.....we all love you Annie.

 

[tomby]

Ann,
So sorry for your pain and discomfort, but thanks for sharing. You are an inspiration and a big help. I've been neglecting the ROM exercises also but will get back on them.