I am back

[Uptown]

I posted a question back in 02/2011 asking about a Headmaster collar. It seems I now "belong" here. I am currently under hospice care and things have really progressed. My digestive system shut down in September and after 19 days with no activity they put me in the hospital, colonoscopy prep, mag citrate and ended up vacuuming me out and sending me home. The hospice folks are addressing the pain through methadone but otherwise nothing but symptom management. I have very little muscle left anywhere with a nice trim waist 14 inches less than when I was here last. I can barely breath because of muscle loss but am being told an IPPD is not available while in hospice so I use an ambu bag to stretch the chest enough to breathe. Taking 8-10 senna and 6-10 colace daily because the muscles quit working especially the descending colon. Not enough abs left to push it out. I am cutting back on the methadone because a lot of the pain has turned to total numbness. I have so many questions but hospice keeps telling me it is time to lie down, get comfortable and medicate out. Ironically I still drive and can do a lot with just bones and tendons.

Anyone here under hospice care? I am curious why I can't even get a chair to sit in. I purchased an Invacare At'm take apart motorized wheelchair so I can get out and about. I sit in it since my spine is now totally exposed and painful to sit up or on any hard surface. Since I am mobile I am wondering if more assistive devices are available in hospice or not. I could use a high back chair with neck/head support and slightly leaning back to take the pressure off my spine.

Anyone in the Dallas area? Looking for resources now and not sure where to turn. Appreciate you letting me hang around. At least I am assuming you don't mind. :roll:

 

[johnnyliverpool1]

uptown...you say. ican do a lot with just bones and tendons....i loved that..shows your gutsy...best to you..johnny..

 

[Ms. Pie]

Hi Sweets! Wow, you progressed very quickly. Please contact your local ALSA and see if they can loan you equipment to make life easier for you. They're happy to loan you things for as long as you need it. Even hospital beds!

http://webtx.alsa.org/site/PageServer?pagename=NTX_8_patient_family_services

http://webtx.alsa.org/site/PageServer?pagename=page_not_found

Call them. They can help in many ways!

 

[HelenL]

Wow, so sorry you're where you at right now, but love your attitude.

I'm not (yet) familiar with some of the terms you used, so forgive me if I say something that you've already explained... are you on hospice because of your breathing? Are you able to eat or have a Peg? I guess I'm wondering if your hospice is familiar with ALS, as I know many people with ALS can have hospice for years. I also know that some PALS can go off of hosice, and then get a pwc. Hopefully the ALSA can lend you one.

Sheepskin under your butt will help the pain.

Good luck and hope you're feeling mor comfortable!

 

[marypat]

different rules in different states on hospice but you may have to opt out of hospice to get what you need and then reenter. i'm not sure

 

[Uptown]

Sorry for dropping out of touch but I started having panic attacks because of the breathing difficulty and reading the posts just caused my BP to skyrocket. I have spent many nights with the hospice folks on the phone talking me off the ledge. I am much better now, though. Thank you everyone for the posts. I did contact the ALS folks but keep getting the gee you have motor neuron disease but not the official ALS diagnosis. They won't even let me go to an ALS clinic. I tried contacting MDA even and the same crap. Oh well, just not worth it to have to get the BP up. I hit 202/160 for days when they gave me Diflucan for thrush that just kicked the methadone into high gear. I have been weaning off of it and am down to about 2 mg every 10 hrs. It was one hell of a ride getting down to that. I have been using an old technique of filling the sink with ice water and holding my head down. It drops the heart rate and BP almost immediately and wakes me up enough to try and read. I am going to a neurological pulmonologist for follow up on Thursday and based on that I will get an IPPB, schedule a night at the sleep clinic for BiPAP titration and get a cough assist. If I hadn't found y'all I wouldn't have even known what to ask for. Thank you so much. I told hospice to make it happen or I find a hospice group with more ALS experience and that was the trick. I pray for all of you almost every day. My toes are now curled from no muscle in the feet and I am the Rice Krispie kid when I walk with all the snap, crackle and pop in my bony feet. Thanks again for such great information. I am now breathing beyond the discomfort and having some big muscle guys stretch my chest which helps a lot. I want to say I feel your pain but I know each person going through such stuff is different. Until otherwise, I am planning on going on with this as long as He lets me.

Ed

 

[Ms. Pie]

So are you saying you don't have a Di ag no sis yet?

 

[Luke]

I lack the personal experience and expertise to offer you any help, but I just wanted to say I'm humbled by your story. You have a remarkable amount of strength and will. I'm sorry you're facing such a painful battle and I wish you continued strength. I know you'll continue to get great support and insight on this forum. Take care.

 

[Uptown]

So are you saying you don't have a Di ag no sis yet?

Diagnosis Post Radiation Lower Motor Neuron Disorder. Often misdiagnosed as ALS. Destruction of brainstem and cervical spine and spinal cord from excessive amounts of radiation to treat Stage IV Throat Cancer in 2003. 9 years of constant battle with swallowing, loss of muscle and now digestive system and breathing. ALSA, MDA and other organizations do not recognize it as a true Motor Neuron Disease although it is classified under Other Motor Neuron Diseases. :roll:

 

[Uptown]

Medulla oblongata. The "Command Center" of the body is going rapidly. Time is standing still, bp all over the board, heart rate up/down by the second, temperature from 97-100 minute by minute as the body struggles to regulate everything. Breathing and digestion is on manual override. I would post more but it is so difficult to wait a couple of days for the post to be "approved". Those days seem to be weeks. It shows 2 days but was really 4 which is a relief. In that time BP from 202/160 to 108/78 and no 2 the same. Heart rate from 64 to 135. Off to the neurological pulmonologist for breathing and coughing help. It is a wild ride for sure.

Hoping for just another Day in Paradise for all. Merry Christmas.

Ed

 

[Uptown]

Just to clarify I started having lots of symptoms in 2007 but the neurology dept at UT Southwestern got in an internal battle over my diagnosis even throwing papers at each other on studies showing how this mimicks ALS but isn't really and rarely affects anything beyond paralysis from the neck down although one case of symptoms similar to me in over 200 test subjects. Learning to override the brain on breathing, swallowing and even regulating body temp with many layers of clothing, socks in 4 wts, ice water head dunking for heart rate and bp. Still don't understand why the docs won't help. I love you Dr Gil Wolfe for "banning" me from the clinic because there is nothing you can do.

 

[Uptown]

WOOHOO...instant post. I shall return.