ferncohen.com
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!
Friday, October 24, 2008
Sunday, October 19, 2008
Saturday, October 18, 2008
Coping in Different Ways
ferncohen.com
There is a very interesting posting on another blog about another ALS patient, who has 3 daughters, each of whom are handling their mom's illness very differently. Please check it out.
One of the things I have learned is that each person has his/her own way of coping with a friend or family member with a serious illness. I'd be interested in everybody's take on this entry above, after you read it, either in a comment on this blog, or a private email.
There is a very interesting posting on another blog about another ALS patient, who has 3 daughters, each of whom are handling their mom's illness very differently. Please check it out.
One of the things I have learned is that each person has his/her own way of coping with a friend or family member with a serious illness. I'd be interested in everybody's take on this entry above, after you read it, either in a comment on this blog, or a private email.
Thursday, October 9, 2008
Monday, October 6, 2008
Update Oct 6, 2008
ferncohen.com
Check out my new articles "Where to Donate Christmas/Chanukah gifts", and "Best Places to Volunteer for Christmas/Chanukah in NYC"
Wishlist: A quiet place to continue and finish writing my book[s]
I always wanted to study Anthropology, but I got hung up with the "what are you going to do with that?" syndrome
when I was in college. So I found free courses through MIT, and looking for free courses elsewhere.
A decent digital camera or time to master using the crappy one I have. I still mourn the loss of my Nikon Coolpix that was
stolen by an aide in the early days
Wish I could: Hire someone to go with me once a week to the city for a few hours, just to explore
Hire the PT once a week to stretch me out and massage me, and maybe just exercise me a little. I said good-bye
to her on Wednesday, because Medicare/Medicaid won't pay for her anymore, due to the fact that I do not have the
kind of illness that can improve, and even though I have actually gained strength, according to the PT.
Just get all my pictures sorted out so I could just scan the best representatives in the computer.
Connect with more old friends and family members to clear up some fuzziness of memories, or should I
write from the fuzziness? [might be an interesting effect]
Find an author/mentor to guide me in this journey of writing this book.
Find someone to just do some things the aides don't do, i.e. clean windows, behind furniture, under things, clean and
soak bunny litter-boxes with vinegar weekly.
Hire someone to remove the bathroom hamper, retile that part of the wall, and replace the vanity/sink with a wall-hung
sink. Although first I need someone who can measure the dimensions of the shower/tub-slider chair. You see, I am sure
if I do those two little modifications, I could use the tub-slider. Better yet, if I do those two things, there might
just be a small enough transfer chair that the aides can use to wheel me into the bathroom, at least part of the way.
I now: Have a handle on my financial situation, and know what I have to do. This doesn't mean I have more money,
just that I know that I had to contact my creditors and make a plan, and NEVER be late on a bill again! Suze
Orman says that is what everyone must do now!
Am totally committed to not buying anything but the barest necessities UNLESS I HAVE THE CASH!
Feel completely okay with being alone to accomplish my goals, above. I just wish I had access to some minimal
help with some things I can't physically do.
Know the direction of my first book, or books, but I wish I could decide if it's going to be one book or two. So
what I am doing is writing the chapters of both, and figuring out if I can somehow ibtertwine the two to make
sense, i.e. memoirs segue-waying into present.
Check out my new articles "Where to Donate Christmas/Chanukah gifts", and "Best Places to Volunteer for Christmas/Chanukah in NYC"
Wishlist: A quiet place to continue and finish writing my book[s]
I always wanted to study Anthropology, but I got hung up with the "what are you going to do with that?" syndrome
when I was in college. So I found free courses through MIT, and looking for free courses elsewhere.
A decent digital camera or time to master using the crappy one I have. I still mourn the loss of my Nikon Coolpix that was
stolen by an aide in the early days
Wish I could: Hire someone to go with me once a week to the city for a few hours, just to explore
Hire the PT once a week to stretch me out and massage me, and maybe just exercise me a little. I said good-bye
to her on Wednesday, because Medicare/Medicaid won't pay for her anymore, due to the fact that I do not have the
kind of illness that can improve, and even though I have actually gained strength, according to the PT.
Just get all my pictures sorted out so I could just scan the best representatives in the computer.
Connect with more old friends and family members to clear up some fuzziness of memories, or should I
write from the fuzziness? [might be an interesting effect]
Find an author/mentor to guide me in this journey of writing this book.
Find someone to just do some things the aides don't do, i.e. clean windows, behind furniture, under things, clean and
soak bunny litter-boxes with vinegar weekly.
Hire someone to remove the bathroom hamper, retile that part of the wall, and replace the vanity/sink with a wall-hung
sink. Although first I need someone who can measure the dimensions of the shower/tub-slider chair. You see, I am sure
if I do those two little modifications, I could use the tub-slider. Better yet, if I do those two things, there might
just be a small enough transfer chair that the aides can use to wheel me into the bathroom, at least part of the way.
I now: Have a handle on my financial situation, and know what I have to do. This doesn't mean I have more money,
just that I know that I had to contact my creditors and make a plan, and NEVER be late on a bill again! Suze
Orman says that is what everyone must do now!
Am totally committed to not buying anything but the barest necessities UNLESS I HAVE THE CASH!
Feel completely okay with being alone to accomplish my goals, above. I just wish I had access to some minimal
help with some things I can't physically do.
Know the direction of my first book, or books, but I wish I could decide if it's going to be one book or two. So
what I am doing is writing the chapters of both, and figuring out if I can somehow ibtertwine the two to make
sense, i.e. memoirs segue-waying into present.
Thursday, September 25, 2008
ALS Registry Bill Passes Senate
ferncohen.com
As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.
What does this mean for ALS patients?
It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS.
If anybody remembers my blog entries from May, 2007, a delegation of PALS, CALS, and family members of people with ALS went to Washington DC to lobby for the passage ofthis bill, so I am proud to have been part of that.
As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.
What does this mean for ALS patients?
It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS.
If anybody remembers my blog entries from May, 2007, a delegation of PALS, CALS, and family members of people with ALS went to Washington DC to lobby for the passage ofthis bill, so I am proud to have been part of that.
Saturday, September 6, 2008
Frustration
ferncohen.com
I have had to deal with the most maddening situation this week. Basically, I needed something and it all seemed so simple to me -- a couple of phone calls, maybe a form to fill out, and a professional involved in my case to expedite the whole thing. Well, this process took on an ugly life of its own. Three days of unnecessary emails, doubt, and questions from the "professional", enmeshed in bureaucracy, left me angry, exhausted, defeated, and bitter. In the end, I had to remind myself of a few rules:
1) A definition of insanity is "doing the same thing over and over, and expecting a different outcome"
Well, this person is someone I have dealt with before, more than once! Each time I have dealt with her, I end up feeling the same way I did yesterday. So why did I go to her
again? Does this mean that I am insane? Probably. But it also a control issue, one where I somehow convince myself that a less-than-competent bureaucrat will see things
my way, or at least I can teach her to. Well, sadly, this never works with most people.
2) I seem to forget, at times like these, that not everybody works as I do. Part of this frustration is due to the fact that I can't work anymore, and wish I could. Anyway, I
am always thinking "if I had that job, I could do it so much better.
3) Most importantly, at some point, I just have to accept that my problem isn't going to get resolved with this person and either move on somehow, or find another
resource to solve the problem.
The problem with ALS is that there is often no time for this nonsense! You would think that the people who work with ALS patients for a living, would always keep that in mind. Alas, this isn't always the way!
I have had to deal with the most maddening situation this week. Basically, I needed something and it all seemed so simple to me -- a couple of phone calls, maybe a form to fill out, and a professional involved in my case to expedite the whole thing. Well, this process took on an ugly life of its own. Three days of unnecessary emails, doubt, and questions from the "professional", enmeshed in bureaucracy, left me angry, exhausted, defeated, and bitter. In the end, I had to remind myself of a few rules:
1) A definition of insanity is "doing the same thing over and over, and expecting a different outcome"
Well, this person is someone I have dealt with before, more than once! Each time I have dealt with her, I end up feeling the same way I did yesterday. So why did I go to her
again? Does this mean that I am insane? Probably. But it also a control issue, one where I somehow convince myself that a less-than-competent bureaucrat will see things
my way, or at least I can teach her to. Well, sadly, this never works with most people.
2) I seem to forget, at times like these, that not everybody works as I do. Part of this frustration is due to the fact that I can't work anymore, and wish I could. Anyway, I
am always thinking "if I had that job, I could do it so much better.
3) Most importantly, at some point, I just have to accept that my problem isn't going to get resolved with this person and either move on somehow, or find another
resource to solve the problem.
The problem with ALS is that there is often no time for this nonsense! You would think that the people who work with ALS patients for a living, would always keep that in mind. Alas, this isn't always the way!
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