Head Drooping - Neck Brace??

[Dennis-Wburg]

My wife who was diagnosed with PSP in 2011 is having difficulty keeping her head up. This makes it difficult for her to eat and drink without choking. She uses a straw to drink and we have not used thickeners, yet. Last summer (July 2014) we had speech therapy sessions to help her strengthen her throat & voice muscles with limited short term improvement. My question is, has anyone with similar problems tried to use a soft neck/collar brace to help their loved one support their head. I was hoping this may improve eating, drinking and maybe even speech. Any thought would be helpful.

[Malm1959]

It might help to have a high back wheelchair. My mum has similar issues. I always make sure she is upright to eat. I give her tiny bites very slowly and all her drinks are now thickened. I position pillows around her wheelchair to get her in appropriate angles for eating, mainly my mum eats oatmeal, ice cream, yoghurt and other foods she enjoys.

[blackcushion]

When mum was alive I asked for a neck brace they said it wouldn't be any good they wouldn't even try one which annoyed me I'm sure it would be easier to feed your mum , mind you the nurses and doctors in builth wells had never heard of the disease . Hope you find a solution xx

[shasha in reply to blackcushion]

CRIKEY WE ARE GOING TO BE MOVIN G TO WALES IN THE NOT TOO DISTANT FUTURE WE HOPE - WE WERE THINKING OF NEWBRIDGE ON WYE WHICH IS VERY CLOSE TO YOU IS T NOT?

[Hidden]

Sorry to hear about your wife. Unfortunately, unable to offer any suggestions. Mum's head fell backwards and we had a head rest attached to her wheelchair, however we had to go down the tube feeding route to stop choking and aspiration.

[blackcushion]

Hi yes it's just up the road about four mile no one has had psp around here till my mum had it they learnt alot though I was telling them what was going to happen this site helped me alot . You will love it around here I wouldn't want to live any where else xx

[Dennis-Wburg]

Thanks for your suggestions and support. This forum is the best world-wide support group for this terrible disease. It has certainly helped me to prepare for the future while dealing with the present - one day at a time. Since my post a few days ago, I found a similar question and several replies from last year. I must have missed it. Very helpful information. My very best wishes to the caregivers and those suffering with PSP. Stay strong!

[Hidden]

My wife, Roisin, had the same problem. Her neurologist gave her a mild botox injection to free the neck muscles. It worked. He also recommended the use of a neck brace for an hour or two each day "to re-train" the neck muscles because over time the effect of botox reduces. Although Roisin hated the soft brace, she went along with it. When the injection was repeated about six months later, she continued to use it. Incidentally, in the last year of her life the neurologist also injected her upper arm in order to try to lessen the creeping"spasticity" that was causing her arms to become rigid. I am not sure this worked so well as the neck injections. We were worried about increasing the strength of the dose because we were advised that a side effect can be impaired breathing.

Christopher

[Dennis-Wburg in reply to Hidden]

Barnacle, thank you for your thoughts. I'll discuss with our neurologist at the next visit.

[Katie-Sadowski in reply to Dennis-Wburg]

Hi Dennis,

I am new to this site. We live in Honolulu and my mom was diagnosed 11/2013 with PSP. Her head is now dropping forward like your wife. Do you mind telling me what you ended up doing and how your success is going?

Many Mahalos (Thanks)!

Katie

[Dennis-Wburg in reply to Katie-Sadowski]

Katie, sorry to hear about your Mom. I had forgotten about my post earlier this year. I purchased a 3" foam neck collar, universal cervical support. They are available (about $20) on line or any med supply store. Initially, it seemed to help keep her head more erect and aid swallowing. After 3 or 4 months it was less effective and only used occasionally now. My wife now spends most of her time in a recliner which helps support her neck. It was an inexpensive temporary "solution" so I would recommend trying it. We need to do all that is reasonable to help our loved ones be more comfortable. Best wishes for a nice Christmas and a great 2016. Dennis