Time for a quick update...

[Uptown]

I have now had 2 visits with a neurologist and referred to the motor neuron specialist I have tried to see for a couple of years so things are moving along. I totally weaned off of the methadone and many problems seemed to have lessened. I went from a wheelchair to walking 1-3 miles a day. Spent time with a chiropractor trying to refire some muscles, developed a good stretching and core building regiment with good results and go every other week for massage and range of motion stretching. Voice has not come back and gets strained quickly in group situations with lots of noise around. Unable to sing but spending time with our choir director on voice projecting, glottal exercises in an attempt to help airflow and vocal cords. He thinks it is purely vocal muscle related and not airflow. I got back into the gym working on very low weight range of motion and stretching plus up to 30 minutes on the recumbent bike already while watching the heart rate. Got a different car that is more "back friendly" so it is bearable to ride or drive although rush hour is a no go because it is too stressful.

I started making soup to eat for the first 3-4 days each week with a lot of crap that seems to have helped. Bowels working again after about 100 days off and living on ensure and eggplant. I can eat all foods fine now with a bit of abdominal discomfort but zero laxatives and stool softeners after taking 20/day for about 100 days. I researched a lot of foods that could help nerves in general and concocted a diet from the research. I add in ginger for digestion, tons of root veggies for fiber, turmeric for inflammation, reishi mushrooms for the ton of benefits based on an ALS website, organic chicken stock for protein and an added 25 grams of protein 2 x per day for muscle food. All this seems to have helped immensely. My neck is numb and tingling most of the time so I started using some old Paloxin (capsaicin) and it instantly improved the skin tingling.

In short, I had the best few weeks in years. My digestion improvement is from a tip here about a couple of tablespoons of mag citrate before bed. Cover your eyes...this is graphic..but it just released the bowels and now they work again and daily without any meds so you can imagine what a surprise it is to see so much output continuously. I'm thinking Guinness Book of World Record lengths here. :lol:

Some other stuff is progressing though. Can't swallow thick saliva and parotid gland does not have a tumor but weakened muscles through the face are preventing it from releasing the thick goo and it just stays swollen. Post nasal drip won't swallow and chokes me with coughing till I start coughing up blood. It makes me wake up with gobs plugging up my throat. Jaw is now just flopping around because of loss of muscles and eating gets sore with clenching most of the time. Neck muscles going fast in the back with the head drooping and preventing blood flow and breathing.

I spent weeks on the relationship with my wife and things have greatly improved! Generally, life has improved and limitations are side-stepped with MacGuyver like skills. I never thought I would get to this point in life and I owe most of it to all of you! Breathing is tough when fronts move through with high humidity but they only last for a day or two. Aches and pains are almost welcomed right now after having almost no feeling above the shoulders and below the waist at Christmas. Don't know what has happened or how long but I will enjoy it while it lasts and try to tune out all my doctors that keep telling me I am in the late stages of MND.

I understand now how much worse you all have it and how some things improved for me. After my oral cancer walk...next event shall be a walk for ALS/MND. Resources are so limited and care options are so overloaded. I will do everything in my power to improve that for as many as I can.

Sorry for the long ass post but I have been reluctant expecting the other shoe to drop. I will enjoy "it" while it lasts and do all I can for all of you! I have postponed all cancer biopsies, tests, etc. for 4 months so I can just dismiss this from my mind as there are no treatment options available anyway. I have been consuming about 4,000 cal/day and put on 28 lbs since September but backing down now because the stomach gain made it harder to breathe. All in all..beyond all my and the medical community's widest dream.

Standing on the Promise while enjoying every moment. God Bless you all!

 

[notme]

Glad you're apparently doing better...but a caution--if you're choking and such-have you considered a PEG insertion while you're doing so WELL otherwise? (Assuming you're going to get one at all_) Remember, you an still eat on your own with one in place.

Just don't 'overdo' it. Your muscles are dying with ALS--so strengthening exercises probably are contra-indicated. Though Range of Motion exercises are a MUST for a PAL.

Keep on doing well! Take care

Edit to add: And check with a doc about the coughing up blood--that is NEVER normal for anyone--even a PAL.

Do you use a bipap, cough assist or any of those nice things that help with getting gunk out? There are also meds that can thin secretions if needed (or dry them up) Mucinex?

 

[pearshoot]

i believe some range of motion exersises can not be done without a little weight. i can stretch left arm out to full extention front and over head with ten pound weight but unable to with no weight. still work out on ten machines, upper body limited to 10 lbs, lower body 20-50lbs

 

[Uptown]

Thank you for the comments. I am using some machines at level 1 at the gym so it is a little resistance but no strain or pain afterwards. I am trying to get into the ALS clinic here and setting up a sleep study with a neuropulmonologist since sleeping on my back causes my airway to close from the jaw dropping back and the post nasal plugs blocking the airway or the valve not operating correctly. Hopefully that will happen soon. I have seen him in October and December with initial visit indicating "PT presents as thoracic paraplegic", second visit indicating decreased FCV while laying down with suggestion to set up sleep study. I did not get the FCV values but will tomorrow. Gut wrenching dry heaves from drinking acetylcysteine freed up the diaphragm from adhesions so coughing happens again. Use liquid siltussin sa which is 4 hr guafenesin (mucinex). Can't swallow the big pills but going to try again with olive oil. I am using the iSwallow app to retrain and modify swallowing. Got my voice back at least in the mornings doing glottal exercises from our choir director. I have to use caution on drying out the mouth since my throat starts sticking together from thick saliva caused by radiation damag from throat cancer treatment in 2003.

PEG isn't an option yet because they wouldn't do it when I was near death in September. I had one during cancer treatment and will opt for the button as I get a bit healthier. Aspiration is getting much worse but the lung secretions seem to be encapsulating them and they come up with nebulizing using Acetylcysteine (mucamist).

I am not healed but definitely putting on some weight and fat has improved many things. Spine is my major concern now with no muscles left. I started planking which built the front core but not the back. Doing a dozen excercises throughout the day to build some but they just can't maintain tone because of the lower motor neuron deficits. A week without exercising because of the cold snap caused pretty significant atrophy so I am doing several exercises all day long which helps. Neck is drooping forward which causes tingling and numbness throughout the body. Serum CO2 is rising so I purposely take 5 deep breaths throughout the day to deoxygenate the blood.

Coughing up blood is from an improper Nissen Fundoplication and the stitch keeps tearing a whole in my stomach. Have the proof on an endoscopy after complaining for 3 years. Some blood is coming from the lung blood vessels rupturing from coughing so much as the lungs press against the rib cage because no muscles left ther which also impedes breathing.

Sorry for my brevity or long winded comments but I figure if something is working I should share. My left arm is really shrinking and the veins at looking like varicose veins all scraggly plus it is getting weaker and the left calf too.

Thank you again everyone for so much information here. The neurologist said I am doing about everything the ALS clinic would be doing except the assistive devices. The breathing issues they would refer me to the same doctor I see anyway, Dr Viroslav who helped develop the diaphragmatic pacer.

I am back to living life large thanks to all of you! Or at least living with this instead of dying from it.

 

[notme]

Glad you're "living" with ALS.

And just cuz they wouldn't do a PEG in Sept doesn't mean they won't do one now at all. If your Co2 is building--you need a bipap immediately--not in two or three months. 5 deep breaths a day won't cut it.

Just don't overdo--you don't want to weaken already impaired muscles with doing too much. For ROM, by the way--I'd never suggest doing it to the point of pain. The ROM I teach is passive--a CNA should never do more unless specifically trained to do so.

Keep on keeping ON!

 

[pearshoot]

years ago i wore a c-pac, had surgery removing nose palups and barbequed back of throat, goodbye c-pac. i do stacking air exercise every day. respitory th at clinic said this is good even at 50% fvc. stack two or three breaths then try to cough, extra air will add force keep leaning forward in the foxhole sucess

 

[Uptown]

So finally made it to the motor neuron God of the region today. Spent maybe 90 minutes with the standard neuro exam and said you do not have ALS. I was pretty much in agreement before the visit. Said I have nerve denervation from radiation to my neck. I should see a neuro pulmonologist for help breathing, neuromuscular rehab for pain in muscles and joints and all the muscles gone will never come back. Otherwise nothing can be done since I don't have ALS. just confuses me why I can't get comfort care if the symptoms are the same. I can't breathe, can barely swallow with lots of aspiration because of atrophied throat muscles,losing my voice for 2 months now, losing facial and scalp muscles now, most of the neck gone, no trapezius left on either side, no scm muscles except hardened fibers, losing biceps, forearms, feet, calfs, legs, hands...all cancertreatment related not ALS. The cancer docs tossed me to the neuro guys years ago. What a ping-pong game. Choking on my spit (literally) and trying to shake my head. If it quacks like a duck, walks like a duck couldn't we just make it a'la orange like a duck? Only want to breathe a little.

 

[Uptown]

Sleep study scheduled next Thursday night with neurological pulmonologist for BiPap and suction machine to help breathing and choking on thick goo. Maybe some help with orthotics to hold my head up and support the spine for sitting up. 3 problems solved. FVC from over 100 to 70's in 90 days. "Thoracic paraplegia" seems to be the new label. "Going numb from my head to my toes...I want a new attitude..." seems to be my new song, although slightly modified. Make today the best it can be!