New Developments/Eating Healthy

Firstly, Some good friends from my ALS group lost their relatives to ALS recently.  S. and D.  lost their brother who lived in New England.  Their brother was a creative person at a multi-national toy company, and had a six-year-old son, and three-year-old twin boys, who were born just after he was diagnosed.  This family was so devoted to this young father that, even though the siblings live in New York City and their parents in Duchess County, at least one member of the family went to New England every weekend to see him and his family.

Then maybe two weeks after I heard about this passing, I received the sad news that another friend from my Beth Israel ALS group lost her mom to this disease.  M. was so dedicated to her mom that she went from Manhattan to Brooklyn at least one day every weekend. These two families were held together by their Catholic faith and familial cohesion. It's true that ALS is a family disease, because it affects the whole family.

I am still eating a healthy diet.  For breakfast, I have stopped the Carnation Instant Breakfast [now I think they call it "Breakfast Essentials"], because it is chock full of sugar, despite providing many vitamins and minerals. I now eat a whole-grain type of cold cereal with soy milk.  By the way, people who are vegetarians, or anyone who does not eat meat every day, need another source of vitamin B12.  I found out that soy milk is fortified with B12, whereas almond milk is not.  I stay away from dairy because of lactose intolerance, and what I have learned about the dairy industry and its cruelty to cows, which I won't go into here.  I don't want to shove animal rights down anybody's throat.  You can also get B12 from yogurt, cheese, and other fermented products, like sauerkraut or kim-chi. I don't drink milk, so fortified soy milk is essential for me.  And certain cereals and breads are fortified with B12, as are several products made as meat substitutes for vegetarians.  And, if you are a carnivore, you are getting enough B12.

Which brings me to the next challenge -- Vitamin D3.  Especially for post-menopausal women, but for all human beings, we need Vitamin D3 for strong bones and other organs.  Lately, most of us are not getting vitamin D from the most reliable source, which is the sun.  If you don't live in Sydney, Australia, which has 340 days a year of sunshine, you are probably deficient in vitamin D, unless you  
get 20-30 minutes of sun every day and don't use sunscreen.  Yes, the reason we are not getting enough D from the sun is that we have been so scared of skin cancer -- as we should be -- and use so much sunscreen or sunblock, that we don't get the sun on our skin.  So we need to take it in supplements or get it in fortified foods.  The importance of Vitamin D is that it works with calcium to keep our bones strong.  It's not enough to get the calcium alone.  And for women, it is so important to prevent osteoporosis.  For me this is so important, because even in the summer,  I don't get out as much as I used to, for various reasons.

I have read about the supplement Spirulina [blue-green algae] showing promise for ALS mice, so I bought a bottle, but lately I have been also reading that these same scientists who did this research on the mice, don't know if Spirulina can be harmful to humans. So, I'm taking it very cautiously.

Since most ALS patients die from complications like infections and pneumonia, I look for anything which can slow down progression.  In the 70 years since Lou Gehrig died, there is only one drug [Rilutek/Riluzole] which is supposed to slow progression and only add about three months to our lives.  Whenever I hear of an ALS patient surviving a hospital stay, due to pneumonia or other infection, he/she always comes home with worsened ALS -- that is, IF he comes home.  I look at it this way -- good health and especially a strong immune system, won't cure ALS, but it will help me keep infection away, or help me fight anything I get.  It's the only defense we have.

Writing a book is harder than I thought, especially in my situation: a studio apartment with an aide, and the television going most of the time.  Luckily, my daytime aide goes shopping for groceries in the morning, and I have some quiet time.  And often in the afternoon, she goes in the kitchen and reads for about an hour, so I sneak in a little writing time then. But it's so hard for me to put together the chapters.  I never really took a course in writing a book, so I have no knowledge of book-assembling technique.  I'm doing the best I can, because I don't have money to take online classes right now.

Will eating healthy and vegetarian cure my ALS?  Of course not.  But I need to drop weight and get my blood pressure down.  Losing weight is so difficult when I can't really burn calories.  I keep hearing at my support groups that ALS patients need to take in more calories, because we burn calories faster.  Whoever came up with that has never met me! Why isn't that true for me?  In the first couple of years of this disease, dieticians and doctors told me "Eat whatever you want, and eat a lot", so I did!  And now I'm overweight and suffering from high blood pressure for the first time in my life.  Oh well, I keep trying.

PEG --Get It Early? and Other Info About the Notorious "Feeding Tube"

So they tell you to be ahead of the disease. To get everything early, to be prepared.  In some cases, the suggestion comes too late, because of faster progression than expected. For some, the advice comes too soon and freaks out the patient.  I recall a lady at our support group who was told by the facilitator, make sure you order your equipment before you need it."  The lady, who had been recently diagnosed, and had walked into the room using only a cane,  looked surprised, and asked "what equipment do you mean?".  The facilitator answered "motorized wheelchair, bedside commode, Hoyer® lift -- you know.....".  Apparently, the newly-diagnosed patient didn't know, and this information came as a shock, for which she probably wasn't ready.  And it's so difficult while you're walking, to picture yourself in a wheelchair, and even more difficult to think about a feeding tube while still eating solid food, and swallowing with no problem.  And since it's optional, many patients agonize over whether to get a feeding tube at all.  Unless you know exactly what a PEG tube looks like, you have scary visions of people flat on their backs with any number of tubes coming out of their bodies.

The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one.  And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.

So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia.  So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.

By some miracle,  about three years after my diagnosis [early 2007],  I reached a sort of plateau [for which I feel very fortunate].  Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot.  I had it replaced in September of that year.  But that replacement was never right.  The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.

Then the tube fell out in March of 2010.  I went to the local emergency room.  The local hospital here isn't my favorite, but it's not terrible.  I just didn't have a great time there when I fell and broke my wrist in March, 2004.  I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring.  And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.

But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before.  I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before.  As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.

In September, the tube fell out again.  Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well.  So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway.  Besides, I was not crazy about more radiation on my belly.  Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.

The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in.  So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole.  But that five-year-old hole is not closing up as fast as they said it would.  So it still leaks out stomach acid, especially when I eat spicy foods -- which I love.  And it makes a very socially-unacceptable noise.  it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating.  It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.

Did I get the tube too early?    Maybe in retrospect I did. But it's so hard to know.  At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem.  And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery].  So who's to know?  Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early.  But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure.  And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate.  Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.

Where Were You on December 8, 1980?

I hope everyone doesn't mind that I seem to be veering off-topic this time.  Actually I'm not, because living with ALS is not about talking all the time about my woes and challenges with everyday living, but also reflecting on life and passages and having the time to reflect on the events that have an impact on our lives.  My life is about so much more than a disease that I have had to learn to live with.  Having ALS or any chronic illness is about reflection and also relating the important concept that there is a PERSON sitting in that wheelchair, and often a person who lived a regular, healthy and full life before getting sick or hurt.

I realize that I haven't been updating the blog as often as I would like because I seemed to have a writer's block as concerned ALS.  I was just bored with writing about a disease all the time.  Thankfully, I am stable and there were not a lot of changes.  I think I will have the will to update more frequently if I make it about me and not about the disease all the time. 

Is it possible?  Could 30 years have passed since Mark David Chapman senselessly shot John Lennon to death?  Could it be that the last time we saw him alive was when he was just 40?  What would he be like at 70 years old today?  I think he would be a supporter of President Obama and certainly would be very disturbed about the situation in the Middle East, and the fact that we are at war.  I am sure that he and Yoko, AND SEAN, would be out there demonstrating, making speeches, and even speaking on behalf of candidates whose positions they believed in.  I'm so sorry he isn't with us anymore.  I still miss him, and I don't think he would have been any more slowed down at 70. 

Yesterday at the Dakota, where Yoko still lives, and at Strawberry Fields in Central Park for John's
birthday on October 9 of this year [John's 70th birthday] fans of all ages gathered.  What was most striking to baby boomers such as myself, were the kids who were there who were not even born when John was murdered.  I cannot even wrap my head around that!  As a kid, I don't think there was any dead musician I would have worshiped like that.  It's testimony to the influence John and the Beatles still have on the world.

I thought a lot yesterday about the concept of legacy.  John Lennon left such a legacy to be honored 30 years after his death.  It's his way of living long after his death.  We can all leave a legacy.  Something so simple as my sister Haley making my Mom's special potatoes every Thanksgiving [she's been dead 15 years] is a legacy.  Even my two nieces who were born after my mom died, refer to these potatoes as "Grandma's potatoes".

With the wonders of the internet, it's so much easier to leave a legacy than it used to be.  I wish my mom had been able to have a Facebook page.  She would have loved that.  And, as a movie fan, she would have lived on imdb.com.  And John?  He would have had a field day with Facebook and Twitter.  Just think of how accessible he would have been to everyone through the Web.

We should all work on leaving a legacy.  What would be your legacy?  Do you remember where you were and what you were doing when you heard the news?  I was in my kitchen in Los Angeles, where I moved a year before, cooking my dinner when I heard the news on the radio that John had been shot and was taken to St. Luke's Hospital.  I prayed for him, and a short time later, I heard he died.  I remember not being able to process the information, and wondering why someone would kill this man who had stayed home to be a father that he was never able to be for his first son, to his son Sean. And most of all, he wanted to be the father he never had, since his own father had abandoned him.  He talked about peace, and I believed peace was all he wanted in the world. 

The memorial to John Lennon at Strawberry Fields in Central Park, New York City

John loved NewYork!! I would have loved to hear his take on our city and what's happened since his death -- 9/11, schools, gentrification, Bloomberg.  Because of his murder, his widow Yoko Ono and his son Sean have been reclusive.  But if not for the murder, all three of them would be out there in the city, even in Washington.  Just as Mom lives through her potatoes [and other things, of course], John lives today through his legacy of peace and love. 

I Lost a Dear Aunt, Botox, Machines [again], Book [still]

First, let me say that I lost a beloved family member this week.  My aunt, Ruth Pasternack, was 89 and had numerous health problems in the last few years, but about 40 years ago, she survived a cerebral hemorrhage, so I always thought of her as indestructible. She was my father's sister and very close to him. Today, my dad said he is very sad because she was the only person he could confide in.  He will miss his oldest sister [he has four, and he is not as close to the other three].

Machines....oy, we can't live with them, and we can't live without them.   Kind of like men.....or women, depending on your desires.  Except I can live without a man; I can't live without my machines.  My lifeline -- my internet -- totally went away two weeks ago.   The closest appointment they had was a whole week later.  Don't tell Time Warner, but I found a way to get on some of my neighbors' networks, for a few minutes at a time, anyway.  Finally a week later, the cable guy came, made a "minor adjustment" to my router, and I'm fine.  I don't think anyone particularly missed me and that was a bit disturbing.  But,  I'm back in business. My cable remote had also decided to die last week, and Time Warner promised to send one in the mail.  But we asked the cable guy when he came, if there was anything he could do, and luckily he was able to bring me a brand-new replacement from his truck.  Now I have issues with my bi-pap ventilator and I have to deal with phone calls to the respiratory company tomorrow.  Thank goodness for relay calling, but it does take a long time.

I had my first Botox injections in my legs and about now is when the effects are supposed to be peaking.  It seems to be going well because the aides don't have to stretch my feet as much as before, to get them in the braces.  And, for the first time in years, my feet look like feet again, instead of big shapeless lumps.  I might even sometimes try to wear regular shoes.  The problem is that I am still not seated properly in this wheelchair and I can't put my feet on the footrests without turning them on their sides, and my knees are splayed out.  The bad news is that the whole process for the new wheelchair has been halted due to insurance issues.

As for my book, I am furiously writing and rewriting, paying close attention to tone and attitude.  I want to keep it as light as possible. And it seems that every day I am changing my focus and my title and chapter titles.  I have two other books going on in my head  which are more fictional, so I want to get this first book done.  My aides are giving me more privacy these days.  I am finding myself in a sort of  de facto solitude -- not self-imposed, just that people who used to visit are not coming anymore, and those who still visit are coming a lot less -- and it's serving me with more time to write and do things that I really need peace and quiet to do.  It's not what I would have liked, and it made for a lonely summer, but I've used it to my advantage.  I've taken to being grateful that I am still here, and still able to type.

MDA Jerry Lewis Telethon and Other News

Oops, I did it again!  I let too much time go between updates.  Once again, too many things happening at once.  I got my wheelchair back on a Friday, and had the technician come the following Monday to adjust the footrest and headrest, which were out of whack. And, then, luckily, the next day-- Tuesday -- the loan closet was able to pick up the loaner and I was able to make room in the apartment again.  Sounds perfect, right?  The day after -- Wednesday -- the wheelchair decides to stop working.  The wheelchair company was so upset by this and sent the technician out yet again.  It was the old problem of the wheel slipping from "Drive" into "Push" but this time, we couldn't get it to go again.  The tech said we might have to do it more than once and then give the wheelchair a little shake.  It worked and it has worked ever since -- thank goodness!! Oh, and the bed is repaired.  It needed a new motor too.  I don't know what it is with me and motors, but I wanted to call in an exorcist.  I really felt like I would lose my sanity -- the little that I have left, that is.


Now, to the Muscular Dystrophy Association [MDA] and the Annual Jerry Lewis Labor Day Telethon.  I went to the studio and was told I would receive the Personal Achievement Award and an "interview".  Now I bet you're asking "How does a person who doesn't speak, do an interview?"  Easy.  You get the questions in advance, formulate the answers on the Speaking Device, save them as files named so that you know which file answers which question, and on the day of the interview, hopefully you push the right answer to the right question.  I was paranoid about this.  There were four questions and so I had four files saved and when I got the question, I would open the file and the machine would speak the response.  I practiced several times to make sure the answers were still there.  When I went in front of the camera, it was even easier, because the Telethon was running behind, so we only had time for two questions and answers.  Everybody told me I looked beautiful [liars!] and I did well [not as much of a lie].


It was more thrilling than I expected, because I saw up close some of the performers who were "legends of rock and roll".  Remember that scene from the movie "Rainman", when Dustin Hoffman repeated a promo line from a radio station "WXXX, the legends of rock and roll...." ad nauseum?  Well I got to see Ronnie Spector, Connie Francis, Tommy James [without the Shondelles] and Gene Cornish of the Young Rascals up close. And, of course Tony Orlando, who made me want to "tie a yellow ribbon round the old oak tree" and "knock three times".  He looked great, and his songs remind me of college, because they were on the radio during my college days, and Tony Orlando and Dawn had a  summer variety show on TV [remember variety shows?]  And if you don't recognize these names, then you are under 50. Okay, so it wasn't Justin Bieber or Beyonce.


Now a word about the inspiration I felt.  A lot of disrespect has been paid the Telethon recently, and especially Jerry Lewis.  Jerry is in his 80s and all his old contemporaries are already gone.  Someday, he will be gone too. I read a very snarky article by some idiot in the Washington Post, saying that Jerry is too old, and the Telethon should go the way of the Betamax or word processor.  WHAT???  They raised about $58 million this year in the crappiest economy we have had in decades!!  And as if the article weren't bad enough, the comments at the end were totally shocking.  Comments like "with all the money raised, how come they have no cure yet?"  Can you say "Almost 50 diseases"? and wait!!  Does cancer have a cure?  How many billions have we raised for cancer?  And yet, that money has made a world of difference in research for better treatments, and methods of early detection, which leads to prevention and stopping cancer from spreading.  


So it is with the MDA.  Research has come up with amazingly effective treatments for many of the diseases, and many ways of assuring that people with ALS and the other neuromuscular diseases live longer and more productive lives.  That wheelchair and speaking device I have?  I wouldn't have them if it weren't for MDA, which helped with the 20% copay that Medicare doesn't cover.  My wheelchair cost $25,000 and my speaking device was about $7,000+.  Do the math and figure out 20%.  How many people have that kind of money, especially those of us who have already used our life-savings for uncovered or undercovered medical costs?  And how about the interdisciplinary clinic at Cornell/Hospital for Special Surgery I attend every three months and the support group many of us attend monthly.  Those have to be subsidized by money from MDA, which also runs summer camps for children with neuromuscular diseases, and loan closets which lend equipment to patients whose own are in repair.


I agree that someone should probably be standing by to take the helm, just as Ryan Seacrest is doing for Dick Clark's New Years Eve celebration in Times Square.  But to say that the MDA Telethon should end because Jerry Lewis is getting old?  And to say "with all that money, where's the cure?"? is just pure ignorance and stupidness, as one of my aides calls it.   If someone doesn't want to give, it's not like tax dollars.  Don't give.  And just because you don't like Jerry Lewis and question his motivations, who cares?  He is an icon and the Telethon is an icon and a big fundraiser that does a lot of good.  If you could have seen the little kids I saw in the green room before the Telethon, and how they made me feel guilty for complaining that I got a disabling disease at 48 years old!!  They had great attitudes and their families were just as upbeat.  It was the most inspiring event I had the privilege of attending in a long, long time!!

Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.

Long-Overdue Update

Once again, too much time between updates.  There have been too many things hanging, and too many things changing minute by minute.  I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.

So, I was having trouble with my PEG [feeding] tube.  Since it was replaced in September 2009, at Beth Israel Hospital, it was never right.  From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble.  The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened.  So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor.  That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful.  The doctor at Beth Israel insisted everything was okay, but I knew it wasn't.  So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified 

So fast forward to July and Dr. Crawford at Cornell, GI doctor.  He says I am best off replacing the tube in a whole new location.  This would mean another endoscopic procedure and going under general anesthesia again.  Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site.  Anesthesia is always a risk for anyone, but especially for a person with respiratory issues.  When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time.  But I resign myself because it has to be done.

I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works.  So that's what he did in the same site.    to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.

My wheelchair is fixed -- for now.  Every once in a while, the tilt stops working, but then it starts again unexpectedly.  This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs.  I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important.  So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position.  Getting the footrest out of the way is important for transfers.  So transfers have been hard on the aides and myself.  Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities.  I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.

The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far.  Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside.  I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark.  Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.