Hi Sandy,
Just wanted to bring you up to date of the New Jersey Support Group. We had
our 7th meeting on October 6th and as always we had a great turnout. We ended
up with almost 30 people 12 of whom have TM. As always we had some new members
coming for the first time and as always all of them had never before met anyone
with TM. It is great to let them know " we are not alone". We also had a guest
speaker, Doctor Neil Holland who also happens to be my neurologist. Dr. Holland
was responsible for me taking the trial to see if the Baclofin Pump would be
beneficial for me. After taking the trial there was no doubt in my mind that
the pump could greatly improve the quality of my life. I have now had the pump
since the end of June and after a couple of months of tweaking with the dosage
and the time of the dosages, i think I finally have it right. With my present
dosage I will require a refill approx. every 4 months...no big deal. Doctor
Holland believes that the pump is totally being underutilized for both MS and
TM patients. My advice is anyone who suffers from banding and spasticity have
nothing to lose taking the trial.The trial takes about 3 hours and consists of
injecting a small dose of baclofin directly into the spine.In less than an hour
it will be obvious if the pump will work for you! Please keep in mind that
taking Baclofin orally did not work for me...it gave me headaches and nausea.
However the dose being administered (directly to the spine) is so much smaller
that I have not suffered any of these side effects. I wrote a journal and
posted to this site as well as the 3 sites on facebook so others considering
this medical option would understand what I went thru. For additional
information on the pump you can go the the manufacturer "Medtronics" and learn
more regarding the pump and the procedure.
All the best!
Rob in New Jersey
Robert Pall
4 Victoria Court
Morganville NJ 07751
