Neck dystonia and swallow ability

[CliDol]

Hi everyone. Just wondering when/if your loved ones developed neck dystonia/retrocollis and how it effected their swallow ability please? My dad is very advanced with his PSP and I've noticed a change in his swallow recently, along with more pronounced dystonia. He looks backwards up to the ceiling, whenever he's in a wheelchair/chair, that doesn't have a high back. Welcome any thoughts, thanks!

[lesauerbach]

Yes. My wife had "neck (cervical) dystonia" while she had PSP. The standard treatment was Botox, and we had to go to several doctors before we found a specialist who administered it effectively. Her swallowing problems were not cured however, and she eventually had to get a feeding tube.

[sammy90210]

Hi - sorry to hear about this - plz ask your doctor for carbidopa levadopa (Sinemet) - it helped my dad with swallowing and muscle stiffness

Feeding/PEG tube is another option but it wasn't a good experience with my dad - plz search for the word PEG in this forum and see people's experiences - if you have any questions, plz do feel free to ask

[SarahDoyle]

My sister had exactly the same problem and eventually received botox in her neck and shoulders, which helped a lot. It took 5 months to receive the treatment though and this caused massive issues with swallow and pain. Good luck

[SimonandMaria]

Hi CliDol, here is some info/experience as learnt with my wife :

First of all, a head rest for wheel chair is a Must for certain persons and at a certain stage even a tiltable wheelchair becomes very handy.

Swalloning : there are 2 diferent problems : with PSP one looses swalloing capabilities in anycase over time (independently of neck dystonia), but of course, for anyone of us, swallowing looking upwards is difficult and will definitly facilitate food going the wrong way.

My wife Maria managed to not have the PEG installed and managed to eat to her very last day thanks to a sum of factors :

- Fortunatly for her (its not valid for all patients, she had good responce from Amantadine on various moovments, including swallowing (Dose had to be >200 mg/day <400 mg per day and taken only in morning and lunch, never at night as it worsened (we think) her already difficulty at sleeping)

- finding the right texture of food : call it yoghurt or applesauce or anything inbetween, we just found that tecture (with quite some trial and error) that made it. whatever soup had to have the same texture, we would thicken or thin it we would add cream or breadcrumbs to thicken... The worse thing to do is liquid and pieces toghether... so never give yoghurt with fruit "pieces" or a soup that is watery and has pieces... its has to be homogenous and very similar to apple sauce. In france where we live ther are more than 20 different apple sauces... you could make a sketch similar to of Forrest Gumps on shrimps... with have here apple sauce, apple and apricot, apple and peach, apple anc cherry, apple and chestnut, apple and...

Maria kept eating and keeping her weight for more than 2 years after that PEG had strongly been suggested.

When it became to difficult for her to use a spoon, we started siringing into the side of the cheek, that worked very well.

With hind sight I would have had the peg put in but only after the second, max third pneumonia (or after first pneumonia that required oxygen assistance). But you need to keep age factor to in this choice, Maria was 45 when first symptons appeared (and passed away @ 53)

Maria di not have botox injections in her neck as she fequently whent from hyper extension to complete head down position (hence doesnt work for everyone). The head rest did help a lot. It would though cause (at times) the whole body to extend (as since the head couldn't go further back, she would then lift the whole body, thats when the tilting function of the wheel chair came usefull else she could slip her way off the chair... and by all means as tragic as this can sometimes get, we did the upmost to laugh about it specially after a couple of slides which were indeed funny...

Hope it helps you

Simon

[Stella315 in reply to SimonandMaria]

Simon how was your wife able to overcome 1st pneumonia its taking a devastating toll on my mother since she initially tested positive for the Influenza A. She spent 10 days in hospital with a nose feeding tube which I did not approve off because prior to hospitalizing she was eating 3 meals no problem. But they gave her immense number of IV antibiotics and feel that depleted her immunity. My family against my wishes as her caregiver decided to put her in hospice. I would like ask what helped your wife fight the pneumonia and any natural remedies that you used? Thank you again and your wife sounded like an amazing woman

[SimonandMaria in reply to Stella315]

Dear Stella315,

There is notmuch one can do. Its only antibodies that can fight if its a viral infection. Antiobiotics on the otherside fight bacteria that might be nesting and growing at the same time. I’m not an antiotic fan, and we very rarely made use of them, but they are definitly usefull in a lung infection specially when psp causes food entering lungs.

The nose feeding is also not a bad solution, it doesn’t look nice but it does allow to feed without risking at all the lungs, also it’s easily taken back out once the pneumonia is over.

The disease is a bad disease, hence its even more usefull to think positive, live by the day, remember that the most important thing in life is love (and not health) and to give and receive this love.

last but not least i would double the ration of kisses and cuddles and increase attention to what she might desire more or less (music, jokes, talks, silence…)