Status
Not open for further replies.
I just had a thought about what is NOT going on at this clinic I am taking my mom to here in Gainesville. I just remembered that I was told that the neurologist was the MDA (?approved?) neurologist in this area. But I bet the neurology clinic there is NOT an MDA/ALS Clinic. And that is why we are not offered all the services right then and there but have to deal with the very slow wheels of Shands instead. I think I will need to contact the new MDA contact person for this area/Jacksonville. Especially if I have more delays in getting mom taken care of appropriately after seeing her gerontologist. It would be very rough on her, but I could certainly take her up to Jax for the day if it would be beneficial to get everything rolling like it should!

Again, I appreciate all your input. It is extremely helpful to hear from all of you.

I remember someone asking about the tube feedings at night. At my previous job I worked as an RN at an inpatient rehab hospital. We always had a few patients on tube feedings. I worked mostly with the stroke and brain injury patients. If you have a G/J combination tube we would give the tube feedings (usually at a slow rate of 60-100 ml per hour) through the J tube for a 12 hour period overnight on the tube feeding pump. Usually 7pm to 7 am. In that way, they would be off the pump all day long to have therapies. This also then didn't interfere with their appetite quite as much for those still safely able to eat by mouth. Course, we had to be certain that the head of the bed was elevated at least 30 degrees while administering the tube feeding. Giving the tube feeding through the J tube portion greatly decreases the chances of reflux/aspiration of the feedings.

Anyway I tried to do this with my mom, but she would get very anxious about the tube feeding running (I think that was what was bothering her?) and didn't sleep but 2 or 3 hours a night. So we went back to doing them during the day 4 times a day.

Thanks again all! Pat
 
ptitch-

Just to answer your question about the insurance:

My husband has Medicare, but it is through Blue Cross Blue Shield. It is still "dictated" by Medicare. I believe hboyajian is correct about the FVC level being 50% before BiPap is prescribed. Ridiculous huh? Do you know how uncomfortable that makes a person? And the side effects of not getting enough oxygen are terrible. I guess they just want PALS to roll over and die, cause they sure do put you through hell trying to get stuff approved. What about PALS that have no one to help them through the maze? Sorry ranting!:evil:
 
jimercat

I saw that you mentioned the cough assist on another thread. DO you have any experience with it? Does it work well? Who would benefit from it? THanks, Pat
 
Hey Pat!

Yes my husband uses the Cough Assist. He doesn't use it as often as he should, but it does help him to clear his lungs. I can only go from our experience. Hubby had coughing fits that would leave him breathless. Then he had one that resulted in him not being able to breath in or out. That was real scary! That's when I called the Clinic and they prescribed the Cough Assist.

I would think that any PALS going through breathing issues would benefit to help prevent mucous build up leading to Pneumonia. Just my opinion...
 
Pat,
I'm appalled at the lack of treatment your mother is getting. She needs to be in the hands of a certified ALS clinic. In doing a search on the ALS Association site for ALS certified clinics in Florida there are two listed:

Mayo Clinic Jacksonville
An ALS Association Certified CenterSM
4500 San Pablo Road S.
Department of Neurology
Jacksonville, FL 32224
Kevin Boylan, MD - Medical Director
904-953-2000

Suncoast ALS Clinic
Department of Neurology
601 Seventh Street, South
St. Petersburg, FL 33702
Directors: Steven Cohen, M.D; Alberto Vasquez, MD
727-824-7132

It looks as though Jacksonville is about 60 miles from Gainesville. Here's a blurb about the Mayo ALS Clinic in Jacksonville from a write-up in the Mayo Clinic.org news when it opened in January 2006:

'To become a certified ALSA Center SM, an ALS clinic must provide state-of-the-art care and clinical management and work collaboratively with other ALS centers to enhance patient care. In certifying Mayo's ALS clinic ALSA stated, "The major strengths of the clinic are the quality of care, affability of the staff, sensitivity toward patient needs, and breadth of its services, all available on the day the clinic meets."

Mayo Clinic neurologist Dr. Kevin Boylan, formed the ALS clinic in Jacksonville and serves as its medical director. He leads a multidisciplinary team that provides patients with comprehensive evaluation and treatment designed to maximize their physical function and quality of life. The ALS care team includes neurologists, a pulmonologist, gastroenterologist, psychologist, psychiatrist, a sleep medicine specialist, an occupational therapist, physical therapists, respiratory therapists, speech pathologists, dietitians, a social worker, nurse coordinator and a research coordinator.'

Have you been in touch with the ALS support group in Gainesville? The ALS Association website has these listings for support groups in FL:

Gainesville
Shands Medical Center
2000 S.W. Archer Road
Gainesville, FL 32608
888-257-1717
813-637-9000

Jacksonville
St. Lukes Hospital
4201 Belfort Road
Jacksonville, FL 32216
888-257-1717

My husband was diagnosed with bulbar onset ALS in April. Our neurologist immediately referred him both to a pulmonologist here in town as well as referred him to the certified ALS clinic in Charlottesville which is about 55 miles from where we live. In both instances the appointments were within a week of referral.
I can't believe what's going on down there for you. Surely someone can pull some strings on your behalf. I hope that you can get to Jacksonville with your mom. I'm so sorry for your difficulties.
Keep us posted.
All the best,
Jane
 
Thanks again Jimercat, I will investigate the cough assist when I am actually able to talk with her MD. I had seen info somewhere on in months ago and actually got a CD sent to me on it. However, did not know how effective it was. It helps to actually hear from someone who has hands-on experience with it.

Jane - Thanks for your response and support. I actually got the phone # and email address yesterday for the Jacksonville Clinic and sent off an email explaining our problems down here and asking for the assistance of their Representative that comes down to Gainesville for the "clinic". I also inquired whether it would benefit my mom to take the trip up to Jacksonville to their clinic. We would gladly do that if we could actually get moving on some of these things she needs. It is totally ridiculous to assume we can wait until August to see the Pulmonogist.

My husband and I went out yesterday to the local Hospice thrift store and found a really nice wheelchair with elevated leg rests and brand new drop arm bedside commode for my mom for dirt cheap. I know that medicare will pay to rent a wheelchair for her but couldn't resist picking this one up for $50.00. It is small, narrow and light enough to me to pick up and put in the car. I can actually get it through all the doorways in her house too! Right now she only needs it for distances over 150 ft or so. She gets very "winded" after min amt of walking.

So hopefully we will get some action from the ALS Clinic Representative from Jacksonville either by getting something done down here in Gainesville or by getting up to Jax for evaluation. Pat
 
Status
Not open for further replies.
Back
Top