What
is CJD?
Message from Care Giver
Below:
1) For CJD patient and other neurological disease
where erratic nerve signal trigger throat muscle cramping
leading to suffocation.
2) For others should
throat muscle ever encountered some form of muscle cramping.
In the beginning of my wife’s CJD illness, it was
mentioned that suffocation is the main cause of CJD death.
I have incorrectly thought that the suffocation was due to
eating when the food enter the lung. Because my wife
is fed through the stomach via a G-tube, I felt safe and
nothing to worry.
On 3/15/2023, my wife started
making these gurgling sound with difficulty to swallow
saliva leading saliva seeping out of her mouth. The
Hospice doctor prescribed Atropine to reduce saliva, but did
not address the real issue, cause of the gurgling sound.
Each time that the gurgling sound happen, I started to
noticed that her throat muscle was getting very stiff (see
photo below), or like a muscle cramp. I would then
give a gentle 3-finger massage to help relieve the cramp.
I notify the Hospice nurse/doctor and they prescribed
Baclofen to reduce muscle cramp. What they did not
know was that throat muscle cramp was not like your leg
muscle. Throat muscle cramp was life threatening.
On 4/05/2023 evening the throat muscle cramp became
very severe, and led to breathing difficulty. On that
evening, I was so scare because there was not much time to
do anything. I gave mouth-to-mouth breathing did not
work well. Baclofen given to the stomach was not
working fast enough. Then an idea to give her pickle
brine juice pop into my mind. From my hiking days, I
have taken pickle brine juice to prevent a full blown
muscle cramp. I use a small syringe and filled 3 ML of
pickle juice and shot it into the back of her mouth (throat
area). Within a few seconds the throat muscle relax,
and breathing was restored, crisis averted. Another
benefit, her throat was quiet for the rest of the night,
allowing me to sleep without worry.
Since then,
there has been another three episodes of difficult breathing
at night, and each time the pickle brine juice worked its
magic. The science behind it is that when the juice
hit the back of the throat it disrupt the muscle cramp nerve
signal. I can now say for certain that pickle juice is
a remedy to alleviate this type of suffocation.
Why
this happen only at night time is still a mysterious.
It is a good to be at night time because I am always home to
deal with this issue.
Normal Throat and Feel Soft to the
Touch:
Throat enlarged outward and
felt stiff or hard to the touch, and
led to difficulty of swallow
saliva and breathing
Please help get this info out, and we may be able save
some lifes.