Dystonia of cervical muscles PALS

[Littlebeth101]

Good evening. I'm a PALS diagnosed with second opinion on 8/9/21. I am affected mostly in my left side with some weakness in my right. GJ tube placed 8/6 due to weight loss, dysphagia, gastroparesis, and malnutrition. I am having cervical spasms and weakness. For the last 2 weeks, my head "draws" to the left and my chin is dropping. It is getting more difficult to look straight ahead. Is this dystonia? Would I benefit from a neck brace to hold my head up? I would need something much stronger than a soft cervical collar. Thank you for any advice. I have a call into my neurologist but they are crazy busy and I haven't heard back.

 

[lgelb]

There are several collars that have plastic and metal structures with foam on top for comfort. The more support you need, the more likely you are to tolerate them. These include the Aspen, Philadelphia and Headmaster collars, among others. If you look at Neck Solutions, an online store, you can get a better feel for the options. You may need a different collar when you are walking (if you still are) than when seated. If/when you have a wheelchair, the Savant head rest, which is also shown on that site, may be a good solution.

Weak neck muscles are common in ALS. If the spasms are bothersome, I would try heat and NSAIDs first, with muscle relaxants as more of a second resort. As you might guess, with proper support, the muscles are less likely to "bark." Making sure your mattress and pillow are supportive is also important. Do you have a hospital bed? Since a collar can be constraining in bed, there are options like using microwavable heating pads stuffed with fibers or other "semisoft barriers" on your pillow on both sides of your head. But you will likely need some head elevation to start with for comfort -- thus, the hospital bed.

Best,
Laurie

 

[Littlebeth101]

Thank you for the suggestions . I do have a hospital bed. I will look at your recommendations. The pillow with the side pieces would be very beneficial. I have widespread spasticity right now so my bed is full of pillows to help aching muscles. I've noticed that the worse my spasticity is in my neck and shoulder, the slurring becomes worse as well.