Thanks, Gripes, Wallet Followup, and Other Frustrations

First of all: Things I am thankful for:
Sprintip which allows me to do relay phone calls.
My aides who have stuck with me for years, when there are a lot of easier cases they could be working on, like nice little old ladies who really don't need too much help, just someone to be there.
My family, who invited me for Thanksgiving dinner
Louise, who comes with me to support groups and comes over to help with bills.
Judy, who comes to visit and take me to Starbucks, or further if weather permits, and who came with me to see "Ragtime" on Broadway a couple of weeks ago.
My dad, who helps me make ends meet with grocery money, and a new fridge he bought for me this past summer.
My parents who taught me to do things for myself and not depend on others, an independent spirit which got me through this past week, when everybody was so busy, and I needed to make phone calls to replace everything that was in my wallet.
Mary Knudson, whom I have never met, but who has been there for me.
Maddy DeLeon, who made some frustrating phone calls for me trying to track down my wallet, and who was willing to drive to Brooklyn's armpit to retrieve it for me. She is my angel in other ways too.
If I forgot anyone, please forgive me
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Okay, if you don't want to hear the gripes, and think I come off as bitter and hostile, stop reading here, because the reality is that life with ALS is full of frustrations and dealing with stupidity.  But please read on so you can see that I am not griping for me, because I am rather strong and I can take it.  But think of the little old people who don't question anything, and any other people who don't have the resources and/or presence of mind that I am lucky to retain.  One can only imagine the damage done by people who are in positions they should not be in, because they are either uncaring, incompetent, or just plain ignorant or stupid.  Or maybe they have been in their jobs so long, underpaid and overworked, ready to retire a long time ago, but stuck in a job they resent or hate, and know that in this bad economy, they have few options.  Whatever the reason, the sufferers are the people who are in most need of people who care, have the answers, and are conscientious in their jobs. Not to mention that any of you reading this, could become disabled and/or sick, and could have to deal with these frustrations yourselves.

First, Access-a-Ride and their eight sub-contracting companies.  This paratransit service in NYC is wonderful when it works, which I must say is often, is the best thing to happen to people with disabilities.  It is door-to-door service anywhere within the five boroughs.  And it even connects with Nassau Able-Ride, so you can even go to Long Island. When it is efficient, it is heaven.  If you are in a wheelchair, or unable to climb steps, you can use the lift.

But they have their problems, and this month it has been the phones.  I reached home on Monday from an appointment in Manhattan, at 4:15.  The Access-a-Ride lines to book a trip, close at 5:00.  I have often made bookings this late, even at 4:45.  I had to book my trip for the next night's ALSA support meeting.  For the next 45 minutes, each time I [or the relay operator] dialed, we got a recording "your call cannot be completed as dialed.". At 5:05, just for the hell of it, I dialed and got right through, but guess what?  They don't take trip reservations after 5:00.  So, I wasn't able to go to my meeting at all.
Representatives from the DNNYC,  [which is a wonderful organization to get involved with, if you are disabled and live in NYC], told me that AAR is going through some issues with their phones, exacerbated by internal struggles which have left them understaffed. I hope they resolve these issues quickly, because so many people are dependent on this service, and I wouldn't be able to go to a weekly appointment and monthly support groups without them.  And forget about any enjoyment like theater or visiting people.

This turned out for the best, since I woke up Tuesday morning with a raging cold.  Next rant:  my apartment had been like an icebox for days.  So I called the super, who said there didn't seem to be anything wrong.  But then he opened the living room radiator to fnd that the valve was bad and there
was no heat coming through.  He fixed it within an hour.  One of the better things that happened this week.  I really like my super.  What this is going to cost me, I will find out when I see the maintenance bill. And people with high blood pressure can't take decongestants, so I am pretty miserable, although getting better.  I just pray it doesn't turn to pneumonia.  Using the cough assist machine   can help with that.


And, speaking of AAR, one of their sub-contractors, who told me they had my lost wallet, and to which I took AAR on a cold Saturday morning to retrieve my lost property, claims they don't have itafter all.   My friend Maddy made a few followup calls, and was willing to go there again once they said they had it.  But, alas, my wallet has slipped into another dimension.  No one was available to assist me that weekend.  I had no money, no ID, no credit cards.  I went to my local Citibank branch, and got a temporary ATM card on Saturday afternoon, and waited for the permanent card, which I have since received.  All weekend long, and into the beginning of this week, I managed to report everything lost and requested replacements, either by relay calling or websites.  With the exception of one thing: my Medicaid benefits card.

So here's the most ridiculous frustration of all.  My Medicaid case worker is the epitomy of the person I described above.  He has made so many mistakes, I couldn't list them all, right down to sending a letter threatening to take my homecare away due to my "refusal to cooperate" with the necessary forms.  I had submitted the forms to his office but someone neglected to tell hhim about that.  I can only picture some poor frail octogenarian getting that notification.  Anyway, if you see a compact car with the personalized license plate "Mambo Man", wave to my Medicaid caseworker, [I'm not kidding about this].  So I called Mr. Mambo Man to ask him to help me get a replacement for my Medicaid card and he said "you are not on Medicaid anymore.  You left the system".  Huh?  This was news to me!  So I told him he must be mistaken, and gave him my social security number.  He admitted he was mixing me up with another Cohen [probably thousands of Cohens].  So then I asked him again how I go about getting my Medicaid card replaced, and he said "call 311 [aka "citizens hotline"]  This is a number to report heat outages, ask touristy questions, and the like.  I was puzzled, so he said "There is an office on 34th Street, and I will give you a phone number but they never answer the phone".  That didn't sound useful at all. Then he added "there is a procedure to follow, but I am not familiar with it, so call them.  So I scratched my head, thinking "shouldn't my Medicaid caseworker know the procedure for replacing my card?  hmmmm....

So, for those of you who tell me I am bitter, hostile, ungrateful, and negative......don't even imagine how these things are for me to deal with.  Think of your great-aunts and uncles, grandparents and frail neighbors dealing with this stuff.  And even think of the young-ish person like me, who has to deal with a devastating diagnosis, total dependence on others, loss of abilities, and in the case of something like cancer -- pain and weakness from treatments or surgery -- and imagine having to deal with these frustrations on top of an illness.  Maybe then you can have some empathy for the frustrations of bureaucracy.  And now they come up with so-called new guidelines for breast-cancer testing.  Don't get me started...........

What Do I Do, What Do I Say?

Click on the title above to read my newest blog entry, which was published on the official blog of the ALS Association of Greater NY.

What do you say to a dying man?

Since I was planning to write about this topic, I came across this article and thought I would put it out there so those of you who are interested, can read it, mull it over, and then read my response to it later, when I get around to it. I agree with the writer of the article on some points, but not on others. Then again, he is newly-diagnosed, and I am in my sixth year since diagnosis, so I have a whole different perspective. To read the article, click on the title.

Happy New Year 2009

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I'm hoping 2009 is better because 2008 didn't end on the best note. Haley walked the dog in the very early morning Christmas Eve Day, and slipped on the ice. She ended up in the hospital for 3 days over Christmas with a huge gash in her head, and a concussion. Christmas for the Albertarios was not great, to say the least! And Haley is suffering from headaches. I hope she feels better soon.

I woke up on Monday with what seemed like a raging cold. By Wednesday [New Years' Eve], I had full-blown stomach flu. My aides are my unsung heroes, cleaning up after me. As I write this, I am starting to take in a little solid food at a time. But yesterday, I could have nothing but clear liquids. I still feel crappy, and really weak. When Lynette came on duty last night, she ran out to buy me some Pepto Bismol, which gave me some relief. But, instead of welcoming the new year at Nancy's annual party, we stayed home.

Home! I am really depressed looking at this cluttered, dark, rundown place. Years ago, my dad asked me to move into his house, but I thought it would be isolating. Well, there could be nothing more isolating than a studio apartment in Queens, with no sun exposure, and cluttered up with junk. Paradoxically, I probably should have given up some of my "independence" and been around family. But who knew? And it might have upset my dad way too much!

I have been suffering a certain malaise the last couple of weeks. I have some wonderful people in my life, who sent me some outrageous gifts!! But yet, I am sinking into feelings of hopelessness and uselessness. I'm not optimistic about the research and in the back of my mind I am deathly afraid that this is more than the stomach flu, but the final blow that will kill me. I look at my Chelsea and worry what will happen if something happens to me, even though she will go back to the rescue and will be in excellent hands. She is so attached to me.

I haven't been this scared in a very long time.

Update November 14, 2008

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On Sunday, Judy and I took the Q60 bus to 62nd and 2nd Ave. It was really convenient, and we may do it again next Sunday. Thanks to Maddy, Stacey, Toby, Margie and Nancy, I am paid up with the co-op and in a much better position with my credit cards. I made a settlement with Bank of America, and yet they continue to send me bills for the amount they said I didn't owe anymore. I am really concerned about this, and will have to follow up with letters. It just takes so much out of me to make all the phone calls, write the letters, send the emails, etc. I tend to nap a few times a day. I am mostly doing tube feedings to cut down on the exhaustion of eating, and risk of choking. I am trying not to snack at all, so I can drop some weight.

Some minor modifications-- changing to a smaller wall-hung sink, and removal of the hamper -- may allow the shower chair to fit in the bathroom, and might enable me to have a shower more than once a week. And this would cost a lot less than the $7,000 to modify the whole bathroom. I may be able to save a small amount of money towards that every month. Anything for fun or pleasure is not a possibility for a long time. I can't even think about a movie, a meal in a restaurant, a Broadway show, nothing until all my debt is under control, and my credit score improves. I do as many surveys as possible for gift cards, and Amazon gift certificates. But I now must find a teenager in my building that I can pay to come in daily to do the rabbit litter boxes, because that is something the aides find unpleasant and they really aren't supposed to be doing.

I can't even think of participating in any holiday festivities this year, since I can't spend one penny, and have to stop using credit cards. If I don't have the money I can't have it -- period! I must say I'm pretty proud that I can practice such self-denial. But just because one is sick, the creditors don't stop demanding their money, and they won't hesitate to prosecute me either. I have an application for a rent-subsidized handicap-accessible apartment in Astoria, but I doubt anyone will rent to me with such bad credit, so I have to repair it.

Under "Compassionate Allowance", Social Security Disability Review Now Fast-Tracked for ALS/Lou Gehrig's Disease

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Anyone who has followed this blog from the beginning, or has seen a friend or family member apply for Social Security Disability, knows that it takes five months or more to get that first check. And, it takes two years to get Medicare coverage. Well, for someone diagnosed with ALS, that two-year period is waived, as it was for me. That "presumptive" status, and waiver of the two-year waiting period were granted to ALS as a result of advocacy efforts by the ALS Association.

But, until now, there was nothing anybody could do about the 5 months it took to review the case and get that first check. Well, that has changed According to an email I just received
"The ALS Association secured another victory in Washington, DC this week as the Social Security Administration (SSA) implemented a new initiative designed to speed disability applications for people with ALS and other serious conditions.

Under the new initiative, called Compassionate Allowances, SSA has included ALS on a list of conditions that automatically qualify for expedited reviews. When fully implemented, SSA estimates the initiative will shorten review times to an average of just six to eight days.

The ALS Association has strongly supported this initiative since it was first proposed in July 2007 and The Association testified in support of Compassionate Allowances during a hearing convened by SSA Commissioner Michael Astrue in December, 2007. (Our testimony is available on the Social Security website, here:
"

THIS IS GREAT NEWS!!!!!!!

My Compassionate Neighbors, Again!

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Just when I thought things were looking a little clearer, I opened my mail yesterday to find a letter from my co-op board informing me that if I don't come up with a few hundred dollars, they will start "legal proceedings", which I assume means eviction. Another reminder that I am living among neighbors who are not -- well -- very neighborly. Eviction will take a long time, and I will probably be able to get back on track long before they put me out on the street, but this is something I never thought could happen to me. Then again, I never thought ALS could ever happen to me either. Judging by the news of the millions of people losing their homes out there, I am in good company. Suddenly, $7,000 to renovate my bathroom to enable me to take a shower, or even $1800 for a portable "Fawsitt" shower, seem as far out of my reach as any other dream. Of course, neither of these would be an issue if I lost my apartment anyway. Are there wheelchair-accessible homeless shelters?

I had my quarterly appointment at the ALS clinic. I am still stable. The neuro even said he rated me higher in some strength tests. When we both figured it was probably due to the physical therapy I had, he gave me a prescription for some out-patient PT for range-of-motion work. And a couple of angels gave me funds for in-home massage and stretching therapy with Michelle. Courtesy of another angel, I was able to get a haircut and color last week, just in time to attend the Lou Gehrig Awards ALSA Fundraising dinner. It will honor John McEnroe and Sandy Koufax, so I'm pretty excited at being invited to this $1,000-a-plate dinner!

Today on Oprah's show, they featured the Amazon Kindle, a machine that allows you to store and read books online -- very portable. What a great thing for people with ALS who can't hold books and turn pages. At $349.00, it's absolutely prohibitive for me. But on Oprah's site they are offering a $50-off coupon code for the next 7 days. A wonderful item for anyone who can afford it [the books to download are much cheaper than a paper book, and you can also download music and audiobooks]. When I get the co-op off my tail, I can start saving for a Kindle, which is much cheaper than a portable shower!

Update: Hoyer Confusion, Gracie Mansion, Phys. Therapy Rocks!

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Before I forget to mention it, I won a competition in one of my online writing groups, where points are turned in for gift cards [I won 1,000 points] Here is the link to read my entries for a "Healthy Living Journal".

So my physical therapist, Michelle, came from Gentiva Home Care. Herein lies the great Hoyer Lift paradox. Together with her supervisor, TJ, they got the Hoyer out of my basement storage. Now, I should point out that this thing is h-u-u-g-e! I have been resistant to having it in my apartment because of its size, and the aides have been resistant to it because I can still stand and transfer. But, there have been moments, especially when I was trying out the lithium, that I am just too weak to stand and pivot.

So we got out the Hoyer, and the two ladies struggled with it, and suddenly TJ says "this is just not safe to do with one person. You won't be able to use it." I emailed my friends at the ALS clinic, because they were the ones who told me to book PT to train on the Hoyer. Antoinette went through the roof, phone calls ensued, and the result was a second visit with another PT. No problem this time : he made it look easy with one person. But I thank God I don't have to use it yet. PT is wonderful, and very beneficial. Michelle stretches me out and I have been doing so well with transferring and standing. I intend to pay her privately once a week, when Medicare/Medicaid stops paying her, which will be probably in a couple of weeks. At $85 a pop, I will have to prostitute myself with any way I can make money on the web! I found sites where I can earn Amazon gift certificates, which are really good. And I am still doing everything I can, to avoid spending money! Needless to say, there hasn't been a whole lot of fun or enjoyment, but that's the way it has to be for now. I look forward to my weekly Starbucks outing. My summer culminates tomorrow with the annual Ride for Life party at the Pendergasts. And on Tuesday my friend Stacy is coming down from Dutchess County. She is leaving her two toddlers in the care of a sitter and driving two hours each way. It doesn't get much more dedicated than that! Wait until she hears that I need her to hang the picture she sent to me at Christmastime. How embarrassing! But I just can't do some things myself!
My wishlist : to have the apt painted, have pictures hung, and of course to get into Manhattan and be able to leisurely roll around. And of course the beach -- this is the second summer I will not have seen the ocean. Special wheelchair-friendly mats have made the beaches accessible, and of course boardwalks are great. I am still looking for a group that does outings for disabled people. I am accepting that I will never again see an ocean, feel the sand, roll on a boardwalk, or smell the salt air. For someone like me, who has always lived for the beach, and never lived far from it, this makes me sad.

Through the DNNYC [Disabled Network of NYC], I managed to get an invite to the annual barbecue at Gracie Mansion, commemmorating the ADA [Americans With Disabilities Act] I met Jody there, and we took a picture with Mayor Bloomberg. That, and the party today at the Pendergasts, will be the only barbecues for me this summer, so I am grateful for both of those. It's nice to be in a place where I am not a scary oddity that people avoid looking at. I am going to look for more events like that in the future.

Many ALS Patients Have High Quality Of Life, Studies Find

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ScienceDaily (2008-06-24) -- Patients with amyotrophic lateral sclerosis experience an astonishingly high quality of life. This disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, new studies have shown that many ALS patients are satisfied with their lives.