scale=1.0" : "width=1100"' name='viewport'/> Forced to Sit Still and Shut Up -- Life Before, and During ALS

Tuesday, August 16, 2016

Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in Califiornia

A number of people have forwarded this article and video to me  
Anyway, let me summarize:

A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life.  She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law.  California now joins Oregon in allowing doctor-assisted suicide.

Betsy Davis -- the woman in the article -- looked vibrant and still beautiful.  Who knows how much longer she would have had if she didn't die when she did?   I thought of where my head was at,  three years after diagnosis, and I was pretty despairing myself.  My disease had progressed pretty fast in the first few years.  I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible.  I am blessed with the ability to use my hands, which enables me to use the computer, if not,  keeping me from dropping a lot of things.  At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here.  Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate.  Who knew my progression would slow down almost to a standstill?  I have been very lucky.  If I chose doctor-assisted suicide at that point,  I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.

And then there is that word -- "suffering" -- which has been repeated a few times in the article.  Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term.  Am I suffering?  The short answer is yes -- sometimes.  Did I suffer before ALS -- I would have to answer a louder and more resounding yes.  I despaired after broken relationships, broken bones, lost employment, deaths of loved ones.  I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on.  I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die.  If New York had a law legalizing doctor-assisted suicide, I could have ended it right then.  I could move to California or Oregon and do it right now.  I choose not to -- right now.  I can't speak for anyone else.

Without getting into religious beliefs, we all have choices.  Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children?  I once knew  a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance?  Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds.  I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.  

Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident.  She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived.  "Better dead than confined to a wheelchair" she added.  I cringed because I knew sooner or later I would be reliant on a wheelchair myself.  Does she think I am better off dead now?  I don't know; I don't think so.  If I reminded her of what she said that day, I'm sure it would embarrass her.  Who knows if I would have agreed with her a decade before?  We all live in our own little worlds and sometimes never imagine what could happen.  When we think we could never go on, we do.  Ronald Reagan was aganst stem-cell research so I'm told.  Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.

My party of goodbyes has happened more gradually over 12 1/2 years.  In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye.  I had friends and family who came by often and stopped,  either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation.  And I am thankful for some people I would never have met and gotten close to,  if I hadn't had ALS, and for the people who stuck by me all the way.  It's true that in times of difficulty, you find out who your solid friends are.  I had hundreds of people in my life because of my two careers and my volunteer activities.  By necessity, I have weeded out a lot of toxic people.  I don't need a party and for now I choose to hang out a while longer.  

Thursday, August 4, 2016

Endoscopic Procedures #2, #3 amd #4,Trying to seal my abdominal PEG site fistula, and a saga to try my sanity

So I would like to say that my first endoscopic procedure on June 30 to stitch up the fistula left by my PEG removal, was a success. I would like to add that six weeks of disgusting and smelly emanations had finally come to an end, and I could start the enjoyment of my favorite season of the year.  But, if you read the title of this entry, you already know that I can't say any of those things,  and so, by July 2,  I was once again a very unhappy camper.  Oh sure, I was doing the "happy dance" until about the morning of July 2, when I realized that the oozing site was more than just a healing process.  I emailed both of the GI doctors in despair.  I had no intention of repeating the uncomfortable experience again.  My throat was sore from having a tube going down it,  into my belly.   And contrary to the anesthesiologist's promise that I probably would remember little to nothing that happened on that table,  I remembered everything.

So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat.  Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember.  So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat.   When I came home, my throat hurt as much as my 1986 bout with strep,  during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop.  Well, after two days, the throat pain subsided, but the leak resumed.  The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"

So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3.  I figured if I had survived the first two, I could survive a third.  I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars.  She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times.  This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that.  I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp. 

The doctor was confident that the third time was the charm.  And it was -- for two days.  So we could be doubly sure the stitches would hold,  this time I stayed on clear liquids for the rest of that day and liquids the whole next day.  After a 2-day fast, my body was not good at accepting solid food again and the third evening,  I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch.  Before long,  I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times.  There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again.  My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.

So, having not been as traumatized after #3,  I was ready for #4.  But this time, I was told the two GI docs were putting their heads together and "thinking outside the box".  Uh-oh,  I thought,  now we're getting creative!!  The next day I was presented with two possible "solutions".  One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button".  Both devices would have something showing on the surface of my belly;  the cardiac device would be flatter,  and the Mic-key would have a piece protruding about 1cm [roughly a half-inch].  The downside of the cardiac device would be its permanency -- it could never be removed.  In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]

On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure.  Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am.  We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet,  but Au Bon Pain was.  So Cheryl was able to have a cup of coffee.  The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!

The doctor showed me the Mic-key button and indicated which part would be above the belly.  I approved -- what else could I do?  This time, they managed to sedate me enough that I didn't remember a thing,  Miraculously,  there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch.  So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever.  Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.

Is it perfect?  Not by a long shot.  I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks.  But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops.  I can leave the house and wear shirts and blouses pretty close-fitting.  For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly.  And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.

Sunday, July 10, 2016

Endoscopy to Close PEG Tube Site-- Call me "Deep Throat"

So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site.  To recap,  had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow.  In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia.  In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010.  By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site.  It was also ruining my shirts and blouses with stains and emitting an offensive odor.  My GI doctor and I decided it was time for the tube to come out and let the hole close up.

As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed.  Well, mine didn't closeup, much to my chagrin.  My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed.  Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.

I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge].  We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer.  Then we entered the Endoscopy Suite inner sanctum at about 12:15.  The nurses were all cheerful and pleasant.  Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in.  My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team.  They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar.  They would go with a lighter anesthesia and shoot albuterol into my throat to numb it.  I would be awake during the procedure but probably not remember much.

Well, I remember everything.  It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern.  Good job!!"  I'm not clear what the "job" was, except not passing out and not screaming.  All I know is,  I was relieved when I heard them all tell me we were done.

The aftermath was a sore site which bled a little and a very sore throat for about three days.  Oh, and I lost my voice for about the three days that my throat hurt.  All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now.  It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles.  I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content.  Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.   

It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined.  And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].

Thursday, June 16, 2016

PEG Tube and -- Removal of a Faulty PEG and Leaky Hole in My Gut

I have been at the height of frustration, anger and depression for more than a month.  I have had a faulty PEG tube that needed to be removed due to leakage and I had to keep putting off its removal over roughly an eighteen-month period.  My gastroenterologist and I made the determination that the leaky and clogged  tube needed to come out.  Not only could I no longer use it if I ever arrived tothe point where I could no longer swallow, but the site wasleaking t
A PEG tube [Percutaneous Endoscopic Gastrostomy] is urged by doctors for ALS patients to get early in the disease.  Risks from anesthesia increase as the disease progresses, and especially as respiration deteriorates.  Eventually, an ALS patient has problems swallowing and the PEG is often placed earlier rather than later as a precaution, whether or not it is needed at that time.  The patient can eat by mouth even when the tube is there.  In my case, I had a tube placed in 2005,  a year after diagnosis.  At the time, I was totally able to eat by mouth.  But it was suggested to me by the ALS clinic, that it was a good idea for me to tube-feed as a way to conserve energy.  So I put cans of formula in my tube, only to find that the whole pleasure of eating was missing from my life.  Furthermore,  the more I became knowledgeable about nutrition, the more uncomfortable I felt about a substance that was full of chemicals, and over which I had no control.  Yes, it uses up energy to eat solid food -- using utensils, chewing, swallowing, etc. -- but I made that choice.  At that point also, my disease seemed to be progressing so rapidly that I wasn't ready to give up food before I absolutely had to.

My progression slowed down and 2010 rolled around.  At that point, the PEG had been in for five years and was getting old and weak.  I had changed ALS clinics and they referred me to a different gastroenterologist from the original one.  Although I had heard that this PEG could be removed and another one placed in the same opening, the replacement wasn't a success and I was told I would need to go through a second endoscopic procedure.  Now, this is IMPORTANT:  if a PEG tube falls out, the patient MUST GO to an emergency room IMMEDIATELY [if not sooner] because the hole starts to close up IN A FEW HOURS!!  So one morning, the tube that the doctor had replaced for my old tube,  fell out as I was getting dressed.  This was not a surprise because the gastroenterologist already said he would most likely have to make another hole because the original one was "not good anymore" [whatever that meant].  So, while I was sitting at the edge of my bed looking at my fallen-out tube, I knew in my case, that I wouldn't go to the ER and so I let the hole close up.  But I will repeat this: when a tube falls out and you have any intention of having another PEG placed in the same hole, YOU MUST GO TO THE CLOSEST EMERGENCY ROOM IMMEDIATELY because the hole will close up starting in a FEW HOURS and will usually be TOTALLY CLOSED WITHIN A DAY.  This previously-stated information is going to figure into my telling below of what is happening to me in the present moment.

Fast-forward to the year 2014.  My tube that was placed in a whole new opening via endoscopy in the fall of 2010 [the year the replaced first tube fell out] had been giving me problems for a long time.  It was so clogged that water flushes were unsuccessful.  Moreover, the skin on my abdomen around the tube [called the "stoma"] was constantly irritated and inflamed by a leakage of stomach acid.  And even worse, the stomach acid emanated an odor that no perfume or body spray could cover.  And --if that weren't bad enough-- the gauze around the tube was no longer absorbing the ever-increasing amount of acid leaking out of the tube and onto the stoma, was now seeping onto my shirts and tops.  Soon, my aides were dividing my tops into two distinct categories -- "house" shirts and "going-out" shirts.  As you can imagine, with time, the "going-out" shirts eventually made their way one-by-one to the "house" shirts collection.  And after a while, I would have nothing clean and unstained enough to wear for going out.  When I went to the annual Wings Over Wall Street fundraiser in October, of 2015],  I sent one of my aides [Ellita -- whom I call my "stylist"] to the local Dress Barn, where she managed to pick out a lovely outfit of skirt and top fit for a "dressy after-work attire" function.  Needless to say, I came home with a stomach acid leak on the blouse.  As I write this, I am wearing an old ALS Walk tee-shirt with no bra.  My bras I have reserved for rare times when I leave the apartment for medical appointments in the last few days when I don't want my "girls" to bounce with no support [not a good look].  Yes, my second stoma is high enough to wet and stain my bras. 

Fast-forward to  Summer of 2014 when I see my gastroenterologist [GI Doctor] and we both agree that this faulty tube has to come out.  In the fall of that year, I was hospitalized for a DVT blood clot in my left leg [see my blog entry of December 8, 2014] , followed by six months of having to take a blood thinner called Xeralto.  In order to remove the faulty tube, I would need to stop the Xeralto.  So, there goes a six-month period where I had bigger fish to fry than this tube site. Then, after going off the Xeralto in the summer of 2015, it was a few months later that I ended up in the hospital again in October, 2015 for a recurrence of a DVT blood clot.  [see blog entries for To this day, we don't know if the cardiologist was mistaken when he cleared me in June, 2015 free of blood clots and able to stop taking Xeralto.  So when I got out of the hospital, we were coming on the holiday season of 2015 and I knew I needed to stay on Xeralo for several months.  Then, at the beginning of 2016, I was laid up in bed for three months with a broken tibia and my faulty tube was once again relegated to a back burner.  Now, finally on May 11, thet ube was removed and as of a full month later, itis still  gushing out food and stomach acid, ruining all my shirts and bras.  

Two weeks after the tube was removed and still gushing, one of my aides told me this was all ridiculous, and was getting out of hand.  She told me that not only did I reek of a sour odor, but my entire apartment reeked  and when she walked in from the outside, it  hit her like a lead balloon.  We went to the local emergency room of Northwell Health Forest Hills.  I texted my friend Nancy and she came to the ER to meet me.   There was a really nice [and cute!] doctor there who consulted with another doctor. He concluded that this stoma was never going to close by itself.  And this is not something you can just put a few stitches at the top because it goes deep into the gut.  A surgeon has to stitch it up from inside; so I freaked out at the thought that I might need surgery!  My breathing is bad enough that anesthesia presents a terrible risk.

A desperate email to my GI doc and his PA [Physician's Assistant].  I was panicky.  My GI doc said there were less invasive procedures we could try and he gave me an appointment the following week to talk about it.  At the appointment he explained that I probably wasn't healing because the stoma [hole] was forming scar tissue and so wasn't closing up the way it should.  So we scheduled a procedure that involved putting an abrasive substance inside the hole to open it up again and form new raw skin that could then heal and form scar tissue where it needed to form and close up the stoma.  In order to do this, I would have to be off my Xeralto [blood thinner] for four days before the procedure and a few days after.  So I went back for the procedure a week later and stopped the Xeralto four days before and stayed off it several days after.

Where am I now?  Well, I haven't been out of the house -- except for doctor appointments -- since the tube was removed on May 11.  I have been in the apartment with frequent dressing change, no bra because the bras have been badly messed up.  I could smell the odor around me so -- along with my bralessness -- I was not really fit to go out.  My birthday was June 7, and I was supposed to go out that evening for dinner with my friend Louise and I had to take a raincheck.  When my friend Nancy heard that I would be sitting home, she brought me sushi from one of my favorite restaurants.  She made an otherwise depressing birthday very festive.  Two nights later, Louise brought Asian food over from a very good neighborhood restaurant, and banana pudding from the famous Magnolia Bakery in Manhattan.  I have dinner plans with two other friends at the end of the month and wonder if I will have to delay those outings too.  I don't know if this latest procedure will work.  If it doesn't, I will have the endoscopic procedure to stitch the stoma from inside my stomach.  That will have to be scheduled soon because with my winter and spring relegating me to stay cooped up, I refuse to ruin my favorite season of the year -- summer.  In the meantime, I am breaking the bank with purchases of 4x4 gauze pads, tape and other supplies for my dressings, which need to be changed a few times a day.  Not to mention that all my tee-shirts are forever ruined. along with some nicer shirts.  I can't go shopping for new clothing until the hole closes up, either by nature or surgery.  Until then, I remain frustrated and angry, with a serious case of cabin fever.

Tuesday, May 10, 2016

Tibia mostly healed, Physical Therapy, out of bed, foot blister slowing up recovery, sadness and loneiness

Well I am out of bed and I would like to stay out of bed, except for sleep time, that is.  I am reading that it takes up to a full year for a tibia to fully heal, but three months to be able to bear weight.  After two months, my orthopedist gave me a boot to put on, but I couldn't stand with it.  Something was going on with the bottom of my right foot [the side of the fractured tibia], but I didn't know what it was.  Well, I was distraught thinking that I still couldn't stand and in the back of my mind I thought maybe I would never be able to stand again.

The next morning, the aide on duty went to clean the bottom of my foot and noticed a blister, right in the spot where the cast ended. So it seems that the rough edge of the cast was apparently rubbing against the skin.  I had an appointment already planned that week with my primary doctor and she looked at it, told me to see a podiatrist, and gave me a light antibiotic in case it was infected.  The day I finished the antibiotic, I saw the podiatrist who said the blister was not infected despite th pain and there was nothing serious doing under the blister.  But it would take a few weeks to heal.  He lanced and drained it and I had weekly visits for the next month until it totally healed.  Needless to say, I was in bed an additional month.

Finally, I am standing almost as well as I did before the injury but I have home physical therapy to exercise the leg to strengthen the joints around the tibia like the ankle and knee.  When you're in bed for more than three months, the muscles atrophy and have to be "woken up" again.  All in all, I was lucky that this happened during the cold winter and apart from doctor visits, I didn't have to go outside.  Going outside for the doctor was difficult, since my toes were exposed and sticking out of the cast.  One time, we missed Access-a-Ride because we were fighting with a too-small elevator coming out of the orthopedist's office.  There was no courtesy phone call; she just pulled away right in front of my aide.  And when the aide ran after and caught up to her at a red light, she [the driver] refused to come back around or wait.  So we walked from 66th and Second Avenue to 60th Street to catch the Q60 MTA bus and my toes froze.  Luckily we were near the Q60 that goes from Manhattan to Queens.  But then we had to walk/roll from the bus stop to my apartment, toes exposed again.

There's nothing that gets you thinking and reflecting more on your life than being stuck on your back in bed.  And there is nothing lonelier. I really found out who my friends were and they were few, but I consider myself lucky.  More on that later.  I also have certain emotional addictions [more like obsessions] that reared their ugly heads during this time, and I had to pull myself off social media in order to not feed into those addictions.  Social media can be very dangerous for me, especially when I can see the wonderful fun other people have and how they are surrounded by loving friends and family.  Not that I wasn't lonely in my healthy able-bodied days, but I could get out and do something about it.

Tuesday, April 12, 2016

Month three of broken tibia and blister woes and wheelchair cushion problems

So it's coming in on the home stretch of the three months of recuperation from my tibia fracture. I enter to my two month follow up at the orthopedist and he removed the shorter cast? Which went below the knee. This was an improvement on the first cast, which went well above the knee so imagine my delight when they cut off the second cast and gave me a boot thing aka soft cast -- and told mr I could stand using this new improvement. I couldn't wait to get home and do all the things that the ability to stand, allowed me to do.

That happiness was short-lived, however. I tried to stand and the leg with the broken tibia produced the most blood-curdling yelp when I tried. Something was going on with the bottom of my foot and it wasn't good. Was it something wrong with the bottom of the boot? I had no idea. Not to mention that the good leg wasn't perfect either. You see, after two months of lying in bed, my muscles had atrophied and needed building up again. I realized how important it is for me to have physical therapy. Suddenly, my aide looked at the bottom of my foot and saw a huge cyst-like blister.  Oh hell, I thought. Great!! I happened to have an appointment with my internist a few days later and she looked at it and said it seemed infected nd gave me a one-week round of Amoxicillin.  She doesn't like to give antibiotics recklessly and for that I love her.  So I loaded up on probiotic capsules and drank kombucha to compensate.  And I made an appointment with Aadvanced Foot Care, who had solved my plantar fascitis many years ago.  The podiatrist determined I didn't have an infection, but a pus-filled blister.  He lanced it and told me to put bacitracin on it and see him in a week.  It improved but still hurt.  I went yesterday again and he said I could try putting my weight on it.  So when I came home and had to use the commode, I decided to try.  My aide had trepidation, but I did it!! It wasn't great and my leg muscles have atrophied somewhat with three months of bed-rest.  I have a prescription for physical therapy to help me build the muscle, and I also found a website with exercises for a post-fractured tibia.  I have to decide if I want to go outside for PT or have home PT.  I have had both and each has its pros and cons.

Then there is my wheelchair cushion.  When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important.  An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities].  I recently got a Roho cushion, which has waffle-like compartments filled with air.  It has to be regularly inflated to ensure enough comfort.  Well, one morning, we found the valve on the floor; it had come off the cushion.  A Roho cushion that cannot be inflated is useless.  In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable.  So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion.  I thought about buying a standby extra cushion -- $350.00 -- I don't think so.  The ALS Association will come to my rescue some time tomorrow with a loaner cushion.  Their loan closet has saved me many many times.  One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks.  A real pain!!  Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed.  Instead,  I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT].  Below is a picture of a Roho cushion.  You can see the "waffle" air compartments.  It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores.  It is great for old folks who might not have a lot of butt padding and compromised back muscles.

Thursday, March 17, 2016


Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Ask for Senator Murray from Washington State's office.
“Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”
It’s a travesty that we can address! A quarter century after the Americans with Disabilities Act (ADA) was signed into law, people with disabilities – including young people – are still trapped in nursing facilities and other institutions. To address this injustice, Senator Schumer (NY) has introduced the Disability Integration Act (S.2427). This legislation will require states and insurance providers that pay for Long Term Services and Supports (LTSS) to provide community-based services first and offer HCBS to people currently in nstitutions. This legislation has broad-based support in the disability community from over 300 organizations across the country.
The proposed legislation says:
"No public entity or LTSS insurance provider shall deny an individual with an LTSS disability who is eligible for institutional placement, or otherwise discriminate against that individual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life."
The legislation would also make it illegal for a state and insurance providers that pay for LTSS to fail to provide HCBS by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses which states have used to keep people from living in freedom.
You can learn more about the legislation here:
The full supporter list is available at:

Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Ask for Senator Murray from Washington State's office.
Tell them: “Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”