Today with Donna

My newest demos

2010-10-10T08:18:00.000-07:00

Just put up a couple of new demos on my music website. Feedback is always welcome. Thanks for visiting!
<a href="http://acidcowboys.bandcamp.com/album/another-day-in-paradise">Another Day in Paradise by Acid Cowboys</a>

2010-05-16T07:58:00.000-07:00

Friends: we've just found out that the governor of NJ is planning to cut medicaid funded home health care for people like Donna who are often struggling with very inadequate care as it is. Who in their right mind would cut desperately needed services from the most needy among us...that segment of the population who can't cook and prepare their own meals, nor do their own bathing and personal hygiene? Are young, vital disabled adults going to have to live their whole lives in nursing homes? That's going to be the result if they can't get needed care in their own homes. If you care about this issue, please let the NJ governor and/or legislators know your feelings! Read more about this on our Flickr site Thanks

Our CD is now available for download

2010-01-05T17:44:00.000-08:00

Donna Belladonna
Acid Cowboy

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Hope you enjoy the music! All proceeds from the CD will go to help Donna have a better life.

2008-02-10T22:25:00.000-08:00

Here's a photo of a typical day for Donna. She must put her life at risk just to make a simple trip to the pharmacy or the supermarket. During the summer, when the town is swarming with vacationers and beach goers, there is even more traffic! This situation is an accident waiting to happen, wouldn't you say? However, there is no curb cut on the sidewalk to the left and behind Donna; and the sidewalks are often broken and not passable for wheelchairs. She has no choice but to ride her wheelchair in the road...either that, or stay home isolated and alone her whole life, like so many disabled citizens are forced to do. Or perhaps you feel that people like her should be forced to spend their whole lives in institutional settings? Much more needs to be done to address the transportation needs of people like Donna. Our town, like most, is not fully accessible for wheelchair bound citizens, in spite of the ADA. You can read more about this issue and see more photos like this at our photo web site at flickr

Dentistry for the disabled (continued)

2007-03-29T20:35:00.000-07:00

Donna will eventually lose two of her front teeth if we can't find affordable and wheelchair accessible dental care. She has already lost most of her molars. For a brief update on our continuing struggle to get decent dental care for Donna click here: http://www.flickr.com/photos/lejaz/438191104/

Dentistry for the disabled - cont.

2007-02-18T21:56:00.000-08:00

There is a new addition to the story of Donna's struggle to find a private dentist who will accept a Medicaid patient like herself. Unfortunately I have been so busy lately, that I haven't had the time to post it until now. Donna had to have 3 teeth pulled on Jan. 8. Since we could not find a private dentist who would accept Medicaid, we had to pay the full fee($875.00... and this was done in under one hour), or else they would have sent her home to suffer in pain. The worst of it is, she needs root canals and crowns on two of her front teeth, or else she will wind up losing them.

dentistry for the disabled (or the lack of...)

2006-12-13T21:03:00.000-08:00

This very special lady was almost in tears yesterday, because the dentist who helped her last summer when she was in terrible pain told us that he NO LONGER accepts Medicaid for payment. He was the only private dentist in our area who would treat Donna. There are no longer any dentists in our area who accept Medicaid, and Donna has a broken molar that needs to be extracted, and a tooth in the front that needs a root canal and crown. I'm sorry, but I feel this is a terrible disgrace. These dentists really should to be ashamed to let her suffer like this. They can easily afford to take one or two medicaid patients. I know the insurance on the two Mercedes' is high, but with the fees that they charge the rest of us, they can somehow manage to scrape by...ha! (compared to most of the people we know they are more than well off!) There is a dental clinic at the hospital that will take Medicaid patients, but Donna received very poor treatment there last summer and is afraid to go back. The people who do the work there are still in training. They are dental residents...NOT licensed dentists. Shouldn't Donna have the right to be treated by a private dentist of her choice? Don't the disabled deserve the same quality of dental care as anyone else?! If you feel that they do, please let us know. (The rest of the story can be found below).

enough is enough

2006-11-23T18:00:00.000-08:00

New Jersey Transit's Access Link bus service is destroying people's lives! Not literally, of course, but the service is so horrible much of the time, that many people who need it cannot make use of it. We traveled about 6 miles on the bus yesterday to do some shopping for household goods and necessities at a local shopping mall. We boarded the bus to come home at 6:00PM. We didn't get home until 8:00PM. We were on the bus for TWO HOURS, just to get home from a local shopping mall. This is beyond unacceptable! After picking us up the bus travelled about 25 or 30 miles in the opposite direction of our destination to take another passenger home. Then they had to come back another 30 miles to bring us home. On top of this the driver made several wrong turns, and in spite of having global positioning software on the bus she managed to get lost! If this were a very infrequent occurrence, I would not be writing this. Unfortunately, this happens all too frequently. Donna is now afraid to use the Access Link bus for fear that this will happen again. What is she supposed to do...stay at home for the rest of her life? Unfortunately, many of the disabled do just that, at least for the overwhelming majority of the time. I have nothing more to add tonight. I'll write more later. I'm too angry and frustrated about this to think clearly about what needs to be done. If you are concerned about the lives of people like Donna, please have a look at the post, "Time to Fight!" on this same subject.

a most dangerous game

2006-11-20T22:48:00.001-08:00

Dear friends,
A horrible situation exists for people like Donna who are disabled and living on their own. Please take the time to view this photo on our Flickr site. Click here. Thank-you.

Time to fight!

2006-09-08T22:34:00.000-07:00

They did it again! Yesterday we booked a trip on Access Link to go food shopping. After we finished up our shopping, we were ready and waiting for our bus at 6:00PM as scheduled...we arrived home at 8:10PM. The supermarket is 6 miles from our home. We had to wait an hour and 10 minutes for the bus to arrive, and then the bus ride home took an additional hour and five minutes. Once again...the supermarket is only 6 miles from our home. If I was not on board the bus to give directions to the driver, we would have arrived home MUCH later. She had NO IDEA where she was going, and obviously didn't know how to read a map. This is beyond outrageous. Donna was an hour and a half late for her evening seizure medications. What if she had a seizure on the bus? Her home health aide could not wait for over an hour and a half, so she went home before we arrived, and Donna missed her dinner. If I was not there with her she would have had no one to get her ready for bed or take her to the bathroom. This is totally unacceptable, and we will have to fight. If I had this on tape and Donna had had a seizure on the bus, we would sue!!! If someone could lend us a digital camcorder, I would like to record a video of our trips on Access Link, because I plan on contacting the TV network news, our local congressman, and the local newspaper. This is no way to treat our most vulnerable citizens. Would anyone do this to a child coming home from school? Of course not. The parents would have a fit if their child had to wait for 1 1/4 hours for their bus to arrive and another hour or more to go 6 miles! But apparently some people think this is an acceptable way to treat the disabled. If you or anyone you know has had similar experiences with Access Link (and I know for a fact that they are fairly COMMON), please contact us. It is very important that we band together and fight this appalling service. This kind of thing has happend to us far too often, and it has got to stop!

Good news

2006-08-22T22:16:00.000-07:00

Well it's finally over...the tooth that was causing Donna such terrible pain for over 6 weeks is out! We found a private dentist who was kind enough to accept Medicaid and it was over in 10 minutes. Donna is a very happy lady!

Dentistry for the Disabled?

2006-08-17T20:58:00.000-07:00

Well, it's mid August and still Donna's problem with her tooth and tongue has not been resolved. We found out recently that it is a broken tooth that has been cutting into her tongue and causing this large painful lesion that won't heal. Donna does not have private insurance and this has been a major obstacle to getting decent treatment. I recently spoke over the phone with a woman from an organization called Dentistry for the Disabled. I asked her for a list of names of dentists who accept patients with Medicaid or Medicare. She gave me one name...period!!! And, she said she's not sure he's still taking Medicaid patients. Well, Donna needs an oral surgeon, because she has to be sedated to take care of this problem, and there are no oral surgeons who accept Medicaid or Medicare. I spoke to one recently who told me that what Medicaid pays wouldn't even cover his expenses. What good are these government health care programs if they pay so little that no dentist will accept patients with only this coverage? Is this how America treats the disabled and the poor? If someone can't afford private insurance just let them suffer!!! It's a disgrace! A friend of mine in the Netherlands was totally shocked when he heard we are having this problem. It wouldn't happen in his country.

a painful July

2006-07-30T22:03:00.000-07:00

Donna's been in a lot of pain lately. She keeps getting these large and very painful sores in her mouth and on her tongue. Tuesday we are going to the dentist to try to get this long standing problem solved. This is our fourth attempt. There have been two trips to the ER over the past three weeks just to get pain medication. Finally, we have been referred to a specialist. The dental interns at the clinic just don't have a clue when it comes to something like this, but they should have at least given Donna some pain medication to relieve her suffering instead of causing us two unneccessary trips to the ER.

a pain filled week

2006-07-15T21:33:00.000-07:00

Donna has been having a very rough week. I had to take her to the ER yesterday to get some pain medication. She has very large and painful sores inside her mouth and on her tongue that make eating and drinking a real ordeal. The dentist was no help at all on Thurs., so on Fri. we went to the ER. Here is a photo from a couple of weeks ago when she was feeling better. Hopefully that smile will return soon.

Donna and the DJ

2006-06-30T20:54:00.000-07:00

We were having coffee at Wegman's market this afternoon and we met one of Donna's favorite DJ's from 107.1 FM. Donna was so excited, because she listens every evening to her show...without fail! Lisa was kind enough to pose for a photo with Donna here.

A very telling photo

2006-06-17T17:21:00.000-07:00

There's a very interesting photo on our Flickr site that I hope you will take a moment to view. It speaks volumes about the challenge of living with a disability. I titled it "A totally insane situation", and when you view it, I think you will agree. Anyone who is disabled or who has a friend or loved one who is disabled should have a look here.

A Picture is Worth a Thousand Words...

2006-06-10T23:02:00.001-07:00

There's a photo of ours on Flickr that I'd like to share. Click here to view. Here is the text that goes with the photo: Access Link actually arrived on time today! Last week they arrived over an hour and a quarter late...no apology...no attempt to call us on our cell phone and tell us they were running late...horrendous service provided to some of our most vulnerable citizens. Hold your mouse over photo to read additional notes.

Please take the time to read this

2006-06-03T15:35:00.000-07:00

In thinking over what happened to us yesterday when we had to wait one hour and 20 minutes for our bus to arrive just to get home from the supermarket, I thought of a couple of important points. We manage to get millions of children back and forth to school each day on time. We wouldn't tolerate the busses arriving over an hour late to take our kids to school, would we? Of course not. Commuters take trains and busses to work each day...would they tolerate an hour and twenty minute wait for their bus or train? They would be fired if they arrived an hour and twenty minutes late for work...and over 40 minutes late on a regular basis. Yet the Access Link bus often makes us wait over 45 minutes for our bus to arrive when they are running behind schedule. When it comes to transporting some of our most vulnerable citizens, the disabled, they are expected to regularly wait 45 minutes or more for their bus ride to work, to the market, to an important appointment, whatever...and this happens a lot! We would not tolerate such horrendous bus service for our school children, and commuters certainly wouldn't put up with it...certainly not on a regular basis. But when it comes to transporting the disabled, the attitude of NJ Transit is, "If you don't like our service, stay home!"

Our bus arrived an hour and 20 minutes late yesterday. Donna can't go to a wedding, a party, a baby shower, a dinner date, or a movie, because of this pitiful bus service from New Jersey Transit. All those events would be over or almost over before she even arrived! What if Donna and I decide to get married? Will the justice of the peace and the brides maids and best man wait over an hour for us to arrive at our own wedding because the bus is late again!!! This is really insane, and something has to be done about it! We are telling the disabled, "You are second class citizens. You don't deserve the same quality of bus service we provide to our school kids, our commuters, or the ordinary person going to the market on the public bus."

Is this any way to treat a fellow human being?

2006-06-02T22:24:00.000-07:00

Today we went out on the Access Link bus to go grocery shopping. It's normally pretty hard to deal with the fact that we are expected to wait up to 40 minutes for the bus to arrive(on both ends of the trip...going and returning home). However if WE are more than 5 minutes late they will leave without us. Well, we were told to be ready for the bus to take us home from the supermarket by 5:57PM this evening, and by that hour we were sitting outside the store waiting for the bus....which finally arrived at 7:20PM!!! Is this an acceptable way to treat our most vulnerable citizens...people with Cerebral Palsy, Spina Bifida, Multiple Sclerosis? What if they want to meet family or friends for dinner or a movie and the bus is an hour and 20 minutes late? These are people who are often very ill. Should they be expected to sit and wait over an hour and a quarter for their bus to arrive? And don't forget, the bus is often late on BOTH ends of the trip. Donna has a home health aide come in the evenings to give her dinner and get her undressed and washed up and ready for bed. The aide is supposed to be with her for 2 hours. She is not going spend an hour and 20 minutes of her time sitting and waiting for Donna to get home. And even if she did wait all that time, there would be almost no time left for dinner and personal care. Fortunately, I am there to help Donna out in these kind of emergencies. Disabled people who don't have someone like me to help out can't use the bus. They are not capable of taking care of themselves if the aide leaves before the bus arrives. This is not an acceptable way to treat the sick and disabled. I know people who depend upon taxi cabs to get to work or the supermarket. When the cab is 20 minutes late, they are furious. How would they like to wait over an hour and a quarter for their cab to arrive, and then wait again when they were ready to come home? No one would put up with such horrible service, yet the disabled must suffer with this on a regular basis. We are the richest nation on the face of the globe. Is this the best we can do for people like Donna?

DVR

2006-05-31T22:24:00.000-07:00

Donna had an interview with a case worker from the state Division of Vocational Rehabilitation yesterday. I think it went well. She's very optimistic about her future prospects of finally getting back to work. We were so pleasantly surprised when the case worker showed up and she was disabled like Donna (with Cerebral Palsy)! She's a good role model for Donna, I think...proving what can be accomplished in life by someone with a severe disability. I'm always encouraging Donna to have faith in herself... something she never had a chance to develop due to a lot of very negative past experiences.

Memorial Day

2006-05-29T22:41:00.000-07:00

Had a nice time at the boardwalk in town today...Memorial day. Here's a photo I took in the sun and the wind.

A dangerous situation

2006-05-22T23:10:00.000-07:00

Click link here to see the photo and read story (note is on photo). This is a situation Donna confronts every day!

2006-05-18T21:49:00.000-07:00

Here's a photo I took yesterday outside Monmouth Medical Center after a little walk/roll around town in the beautiful May sunshine. We had another quiet day because Donna bit her tongue over a week ago, and it has been so painful that she doesn't want to do much but relax and take it easy. Just eating and drinking can be torture for her.

Off topic...or maybe not...

2006-05-11T22:14:00.000-07:00

I think it's extremely important that all Americans have equal access to the internet...just like we have equal access to our telephone service. If you agree, please click the link below. Thank-you.

Not all smiles and laughter

2006-05-06T21:59:00.000-07:00

A couple of people have commented recently on our photo site..."Donna always seems to be smiling!" Well, I don't normally point the camera at Donna when she is in pain or upset, so I can understand how someone looking at her photos could mistakenly assume she's always smiling and happy. Unfortunately, it's far from the truth. Here is a photo I took yesterday of Donna's elbow. It's swollen with rheumatoid arthritis. It's been acting up again for the first time in a long while, and she's been having to get in bed by 6:00 or 6:30PM because, as she tells me, "My whole body hurts!". Rheumatoid arthritis is a horrible disease. Unlike osteoarthritis it can affect whole organ systems, not just the joints. We had it well under control with a strict non-dairy diet, but her case manager and her family talked her into going back to her old way of eating, and I fear it may come back in full force one day. I certainly hope I'm wrong.

"We're human too..."

2006-05-02T21:34:00.000-07:00

That was Donna talking tonight before she went to sleep. We were talking about how society tends to discard people like Donna. We put them in institutions and 'sheltered workshops' where they are isolated from the general public for most of the time. Sadly, in some cases people like Donna are abandoned even by their own families. "We've got feelings too." "I'm not a piece of garbage", she said. Then she told me about all the times she cried over people laughing at her speech impediment...not just kids in the neighborhood when she was young, but adults, too...when she was working at the mall and at a nursing home. It is so horrible to hear her talk about these things. How can people abandon another human being because they require extra care? And even worse, how can they react with cruelty to someone as vulnerable as Donna? Who can answer these questions?

Important!

2006-05-02T19:37:00.000-07:00

This is an issue that is of great importance to me. If you want to insure that people like Donna have equal access to the internet please click the link. Thank-you.

Jerry and Donna

2006-04-27T15:50:00.000-07:00

Here's Donna and Jerry from last weeks visit in case you haven't seen our photos at Flickr.

Jerry

2006-04-19T22:07:00.000-07:00

My good friend Jerry stopped over to see us today. He is very disabled, but he manages to live on his own in his own apartment in Red Bank, NJ. He is VERY independent, and refuses to live in any kind of institutional situation. He prefers to have total control over his life and his decisions. You usually give up at least some of that in any kind of institution. He's just about the smartest person I know, but he can't get a job because his Cerebral Palsy impairs some of his muscular control and his speech. No one wants to take the time and make the effort to understand what he is saying. It takes a little patience, but he CAN be understood. People just don't want to make the effort, so he must spend most of his time alone. This really saddens me, because he's a great person and definitely worth talking to!!! Here's some nice pics I took today...
Click here

What a world!

2006-04-13T21:26:00.000-07:00

I was reading in the newspaper recently that a group of politicians had just voted to give themselves a $13,000.00 per year pay raise. These were people who were already receiving well over $100,000 per year in salary! I guess they were finding it hard to make ends meet!!!! Poor unfortunate souls! Did they even think for one second what that kind of money could do for someone like Donna to make her life less of a constant uphill struggle. No, of course not! It would go against their religion...what seems like the only real religion in modern day society...more for ME, ME, ME! Is this how we want our tax dollars spent...to give generous raises to those who already have SO much and to ignore the needs of those who are struggling? I find it interesting that they can find money in the budget to give themselves this very generous raise, but Donna's social worker couldn't get any governmental aid for Donna so she could get a refurbished wheelchair lift for her 16 year old van. I sometimes think the American system is more geared towards helping those who are already doing "just fine, thank-you", and ignoring the very apparent needs of people like Donna and her neighbors.

Our NEW photo blog...

2006-04-06T21:29:00.000-07:00

Click the title above to view our new photo blog on Flickr. I have posted some never before seen photos and will be adding more soon.

"It's immaculate!"

2006-03-31T22:01:00.000-08:00

We went out to the local donut shop today for coffee. Our bill came to $3.61 and I gave the young woman at the cash register $4.01 to pay. She looked at the money in her hand and was puzzled. "How much do I owe you?", she asked. "I'm bad at math." Well, I told her the change due was 40 cents, and since we are regulars there, she believed me and gave me the 40 cents. Later, when we were headed home, I told Donna how much we owed and what I gave the cashier, and I asked her how much the change would be. "Forty cents", she replied without much thought! I'm telling this story because recently we found some old papers from twenty some odd years back and Donna's social worker at the time described Donna as a boarderline retarded young woman! I was appalled, to say the least. If she is retarded what does that make the young woman in the donut shop who had a normal high school education. I have heard similar stories from severely disabled people with speech impediments. One woman is a college graduate who was similarly mis-diagnosed when she was young. Because of the severity of Donna's disability she could not hold a book and turn the pages when she was in school. In fact she has not read a single book in her life. It's too difficult for her physically. As a child in school she never had homework, and she has at best a fourth or fifth grade education from a Cerebral Palsy school where many of her classmates couldn't talk or write or hold a book. Her foster mother had to fight to get her into a mainstream school for one year of high school, but she had a very poor educational background previous to that. She struggles with a very poor self-image because of her mis-diagnosis and her poor education. But, I'll always remember the day I cleaned Donna's apartment for her, and her coming into the living room and looking around and declaring, "Wow, it's immaculate!" I suppose that's the kind of vocabulary you would expect from someone who is mentally retarded! How can they accurately test the IQ of someone who can't hold a book and turn the pages, and who's speech is often very difficult to understand. On top of all her physical handicaps, she was on very strong anti-seizure medications when she was young that caused her to have difficulty remembering; plus she often suffers with blurry vision. Should her intelligence be measured against kids who have none of her disabilities? But the geniuses who test people like Donna do just that. They measure their performance against the performance of children who have none of their impairments. Is that fair? I have been around highly intelligent people all my life and have a B.A. from a highly regarded university. When I was in high school I consistently tested in the top 1% on standardized intelligence tests. I know when I am around someone who is bright, and I think I can say with a fair degree of certainty that Donna has at least an average intelligence, possibly way above average! If she had the proper encouragement, guidance and support when she was young, she might very well have turned out to be a college graduate. Instead, she has lived with a poor self-image for most of her life. There's a lesson here for anyone who has a child with a disability like Donna's. DO NOT take the so-called authorities at their word. You know your child better than the so-called experts, and if you know that your child is bright, fight to get him/her a decent education, no matter how severe their disability.

I thought I had seen it all...

2006-03-30T20:19:00.000-08:00

There was a knock on the door today at 11:20 AM. I opened the door and a woman was standing at the door giving me a very dirty look! She looked like she wanted to kill me. Huh! I had never seen this person before in my life. Why was she looking at me this way? Was it because I'm white and she's black? Was she a reverse racist? Was it because she was expecting to see Donna, not a man? But, why the dirty look? Well, I asked her if she was from the home health care agency, and rather than answer my question she just asked me if Donna was there and walked right past me into the kitchen. It turned out that she was the substitute aide for today. Donna's regular Thurs. AM aide had a dentist's appointment. No one from the agency called to tell us that a substitute was coming. Don't you think that on your first day at a new job the proper response when someone answers the door is to say "Hello, I am so and so"...or "I'm from the agency", or just plain "Hello"? If she showed up the first day at any other job and just stood staring at her supervisor with a dirty look, I don't think that she would last long. As it turned out, she was not a good aide, and she won't be back...at Donna's request! She was either high on drugs or mentally ill...or both! No matter what Donna said or asked of her she would break out in giggles. "Can you make me breakfast?" "Giggle, giggle..." "Can you help me straighten my pants leg?" "Giggle, giggle..." It went on this way for the whole time that she was with us. She would even break out in giggles when she was just standing or sitting alone doing nothing but waiting for Donna to finish whatever she was doing. Several times during the course of her stay Donna asked her, "What are you laughing at?" "I wasn't laughing", was her response, even though that was plainly not true! And I thought I had seen it all! I want to make it clear that I mean no disrespect towards people who have mental illness, if that's what her problem is. But Donna has a severe disability and needs very competent help, and this woman couldn't do the job properly...and that's the bottom line. I should mention that we had a different substitute aide for two other mornings this week and she was excellent. So, I guess we're batting 500.

Update

2006-03-21T19:32:00.000-08:00

Yuck! I caught the flu from Donna. I've been seriously out of commission for the past two days. Donna is starting to feel a lot better, thankfully. More when I recooperate from this awfulness(is that a word?).

The good and the bad...

2006-03-18T21:37:00.000-08:00

Well, the good news is...the new morning aide is working out very well. The bad news is...she's taking some time off to move the week after next. Donna is still suffering with her flu virus, but she's a lot better today than she was the last few days...no fever at least and the throat is getting better. Now, I seem to be coming down with a cough! It was a real rough week for us, especially for Donna. We spent 5 hours in the Emergency room on Wednesday, since without the lift working I can't get her to a doctor unless we call a day in advance for medical transportation. Plus, very few doctors take Medicare, unless you agree to cover the co-pay; and almost no doctors at all take Medicaid. It's so hard for her when she is sick, because things that are normally difficult for her to do by herself are even more difficult when she's coughing and feeling weak. Hopefully, she'll be back to her old self very soon.

Hey, what's up?

2006-03-15T21:33:00.000-08:00

Spent five hours today in the ER with Donna. She had close to a 102 degree temperature this AM and was feeling so lousy that she wanted to go to the hospital to get checked out. As it turns out, it's just a bad case of the flu or a virus. She was checked for strep and TB and both were negative, thank God.

Sorry, I couldn't resist...

2006-03-14T22:29:00.000-08:00

Cute or what?

2006-03-14T20:58:00.000-08:00

2006-03-14T16:39:00.000-08:00

Donna was home sick in bed today with the flu. She was up in the middle of the night coughing and she sounds miserable. I think she caught it from the new aide who was here on Fri. She came to work with what sounded like a bad cold or flu. I wish these home health agencies could afford to give their employees sick days! The pay the aides receive is so low that they can't afford to stay home sick, so the clients suffer! Well here's a couple more pictures I found on the web you might enjoy...

God works in strange and wonderous ways!

2006-03-13T21:41:00.000-08:00

If you've been reading the blog, you know that Donna was very unhappy about having her favorite aide's hours cut; and she was not at all happy with the woman who was taking her place three mornings a week. Well, today we got a big surprise. The new aide didn't show up, but instead they sent another new aide...and she seems like she's going to work out great. The interesting twist to this story is that Donna told me that on Sunday evening after she went to bed she said a prayer to God and asked him not to send the new aide that we had last week!!! Coincidence...or not?

On the lighter side

2006-03-12T20:57:00.000-08:00

Here's a cute photo I found on the web today. We've had some bad news lately. I feel like doing something a little cheerful...maybe it will help.

A setback for Donna

2006-03-12T20:51:00.000-08:00

We had a minor setback this week. Donna's favorite aide had to cut back on her hours. She was coming for two hours, five mornings a week...she had to cut back to two mornings a week. Donna was pretty devastated by the news. The new woman is not very competant, to put it kindly...and she is very sloppy! We'll have to cope somehow.

2006-03-01T22:53:00.000-08:00

Interesting article from Harpers Magazine: The Case for Impeachment.

Lies, and more lies...

2006-03-01T20:01:00.000-08:00

Another lie from the mouth of Mr. George Bush...a good, self-proclaimed, God-fearing Christian was uncovered today. Bush declared four days after Katrina hit, "I don't think anybody anticipated the breach of the levees" that gushed deadly flood waters into New Orleans.

From an AP story, today:
In dramatic and sometimes agonizing terms, federal disaster officials warned President Bush and his homeland security chief before Hurricane Katrina struck that the storm could breach levees, put lives at risk in New Orleans' Superdome and overwhelm rescuers, according to confidential video footage.

Bush didn't ask a single question during the final briefing before Katrina struck on Aug. 29, but he assured soon-to-be-battered state officials: "We are fully prepared."

And let us not forget this one: "Brownie's doing a heck of a job!"

The riches of spirit...

2006-02-25T22:23:00.000-08:00

We were both sick today. I have a bad cold and Donna had a bad stomach ache. Donna's weekend aide did us both a favor and went out to the store to pick up something Donna badly needed. Neither of us asked her to do us this favor...she volunteered! That's the type of person she is. She really cares for Donna and would do anything for her. She does a great job caring for Donna 5 mornings a week for very little pay. How come people like her, who make barely enough money to survive, seem to be far more generous and caring than those who have been blessed with SO MUCH more? I wonder why it is that the people with the biggest hearts seem to be the ones who have the least in terms of material wealth...yet they manage to give so much of themselves.

the van

2006-02-23T22:06:00.000-08:00

Well, here it is. If you are new to the blog, you can scroll down to read my posts about the problem with the van lift.

2006-02-23T21:58:00.000-08:00

Here's a nice picture of Donna and her grand-niece from her birthday party in October, 2005. I thought I ought to post a picture of Donna for those of you who haven't visited our website here.

van lift

2006-02-23T17:18:00.000-08:00

We recently discovered that one of our friend's has a brother who is an electrician. He's retired now, but he used to own a TV repair business in a nearby town. He spent about an hour looking at the van last week, and promised to come by our place one day and bring his diagnostic equipment with him. Since the problem we are having with the van lift is electrical in nature, he may be able to help us get to the bottom of it. If it can be fixed, and if he can wire some kind of safety cut-off switch into the system, then maybe it will be usable until we can find a replacement. It's a complicated system, but he seems to be more knowledgable than the mechanics who looked at it previously and couldn't fix it.

2006-02-22T22:13:00.000-08:00

If you are replying to any messages from the old blog please post any comments using the link at the very bottom of the page. thanks

Just moved here today - recent archive

2006-02-21T20:43:00.000-08:00

This is my first post here at Blogspot. I just moved our blog here from another blog website, so I have posted the most recent 20 messages from that site, in case anyone who is new to our blog wishes to read them. February 19th, 2006
12:48 am [Link]	cabin fever It was cold and blustery today...not much to do but stay indoors. We wanted to go to Dunkin Donuts for some hot coffee, but Donna was so cold we only made it as far as the hospital cafeteria. Their coffee is so awful that Donna decided to settle for hot cocoa. I had half coffee...half hot chocolate. I read the paper while Donna watched a little TV. We've got to get that lift fixed soon! (Leave a comment)
February 14th, 2006
10:59 pm [Link]	accessibility (updated) It snowed on Sunday the 12th of Feb. Today, Valentine's Day, there was still snow and ice piled up on every curb cut in town...left there when the snow plows went by on Sun. Donna had to drive her wheelchair in the road, and when we wanted to go on the sidewalk so we could go to Dunkin Donuts, I had to remove as much snow as possible with my foot, and then push her chair with all my strength or she would have been stuck there at the curb with her wheels spinning, going nowhere. This is two days after a snow of about four or five inches! She was very angry to say the least. What if she was alone? She would have had to turn around and go home...another day wasted like so many before. I can understand now why she had so much anger when I first met her. These kind of incidents happend probably several times a week...for most of her adult life. To add insult to injury, when she tried to go to the gift store at the hospital where we went to do her banking, she couldn't get in. The entrance was too narrow with all the Valentine's Day displays blocking the way for her wheelchair to get by. Isn't this illegal? We were both understandably very p.o.'d! (Leave a comment)
February 2nd, 2006
11:56 pm [Link]	Take charge Donna It's fantastic to see that Donna is finally taking an active role in her care. For a good part of her life she was in institutional and semi-institutional settings where she had very little control over her life and very little say in directing her care. She has her own home health aids now, and she is allowed to direct her own care...an idea that, until recently, was new to her. I read a social worker's evaluation of her that she had saved from some 20 some odd years ago, and they concluded that Donna was not ready for independent living at that time. Well, how could she have been!!! She was never really taught how to be in charge of her own day to day living. Plus she was so drugged up that she could not even think straight. (I discussed the mis-management of her seizure medications by her doctor in another post many months back if you are interested). She was encouraged to be a 'good client', to not make waves or challenge authority. No one ever gave her a chance. Many, many times we complained to her doctor and her nurses that she was tired all the time. They never even acknowledged that several of her prescription medications were causing that problem. I'm not even sure they even made the connection. Well, it's taken Donna a while to get used to directing her own life, but since I started encouraging her to take charge of her own life, she has been getting better and better at it! I'm very proud of her, and she's rightfully very proud of herself. (Leave a comment)
January 25th, 2006
01:01 am [Link]	van lift We're still searching for a used lift for Donna's van. Her social worker has tried to get financial aide to help with the expense, but she has come up empty handed. Sometimes I wonder how much we as a society are willing to invest in people like Donna. I know we spend a lot of tax dollars just to cover their basic needs, but "man does not live by bread alone." When you love someone who is disabled like Donna is, you naturally want the best for them. Unfortunately, those of us who pay the taxes which pay for her services don't always have as strong a commitment to their well being as their loved ones do. A few extra dollars a year in taxes from all the middle and upper class taxpayers would make a world of difference to people like Donna. Why can't we find it in our hearts to give just a little more! Is it a matter of being totally self-centered, I wonder...not giving a damn about anyone who is suffering? "It's not my problem", many of us probably think. I wish I knew the answer. (Leave a comment)
January 12th, 2006
12:31 am [Link]	I'm testing two new banners for my music websites. I hope you get a chance to visit one or both of them. You can listen for free. If you like any of the songs, please spread the word. Any CD sales will go to help Donna get her van lift fixed. (Leave a comment)
January 8th, 2006
01:35 am [Link]	Battle of the bands I was in a Battle of the Bands last night at ProjectOverseerProductions on the web. I didn't win, but got a lot of very positive feedback from many of the people listening. The song I entered is the first one on this page here. I don't have the time to play in a band because I'm busy with Donna, but I enjoy being a band in cyberspace. (Leave a comment)
January 3rd, 2006
12:03 am [Link]	No bus trips...cabin fever arrives I called Access Link(NJ Transit) twice today and could not get any trips for Donna for this week...not even a trip to go to the market to do her grocery shopping. I think there's only one bus available during the time frame she needs, and someone else has it reserved on weekdays. It certainly doesn't seem fair. Well, tomorrow I'll try and get her a ride for the weekend. Sat. and Sun. are usually available if you call early in the week. The weather was horrible today, and it's expected to be worse tomorrow, so Donna will be stuck at home...NO TRANSPORTATION. The winters are horrible for the disabled here in New Jersey! No wonder so many get depressed. (Leave a comment)
December 25th, 2005
12:53 am [Link]	Christmas A very Merry Christmas to all of you who have been following Donna's story! And a Happy Hannukah to our Jewish friends! There are so many who are lonely and suffering. Let's keep the spirit of Christmas in our hearts throughout the WHOLE YEAR! (Leave a comment)
December 20th, 2005
07:44 pm [Link]	New Photos New photos have been added to our online photo album here. (Leave a comment)
07:28 pm [Link]	Humanity's potential Donna's new morning aide is doing such a great job! It's such a huge relief and a pleasure to see how well she takes care of Donna. She treats her like she's her own daughter. What a change from some of the other aides we had caring for Donna...like day and night. There's such a great potential in human beings for us to treat each other with kindness and compassion. I often wonder where we went wrong. So many of us don't seem to have a speck of either. (Leave a comment)
December 15th, 2005
01:27 am [Link]	A chance to help Donna I've been recording an album of original music for the past year or so, and we finally have the album for sale. You can check it out if you'd like here. All proceeds from the sales will go to help Donna get a new wheelchair lift for her van. She desparately needs one as you probably know if you have been following her story here on the blog! So you can help Donna and enjoy some great music(or so I've been told) as well. I have received some great reviews of the music at SoundClick.com and at ProjectOverseer Productions. It's called "The Ghetto" by the way, and we are known as LeJaz(the band name). (Leave a comment)
December 6th, 2005
09:48 pm [Link]	I've been absent from the Blog for a couple of weeks because of illness. Donna's hip is on the mend, but she bit her tongue a couple of weeks ago, and it has been unbearably painful for her...especially eating...and even talking. I hope things will be back to normal soon. I hate to see her suffer so much. (2 comments \| Leave a comment)
November 23rd, 2005
12:55 am [Link]	Pain again We had another afternoon in the E.R. at the hospital today. Donna's hip pain was so bad she had to go just to get some pain medication. Believe me, it has to be really horrible before she will go there. We spent over 4 hours there, and today was not even a busy day. On a weekend you often have to wait over 6 hours before you are through. Anyway, they took another x-ray. She's got arthritis in what's left of the hip joint, which is not much. It was aggravated by her former morning aide who was not very careful getting her dressed and washed. (Leave a comment)
November 17th, 2005
10:08 pm [Link]	We got a new aide this week for Tues. and Thurs. mornings. We had to let one of our former morning aides go. She just couldn't do the job right. She was a very nice lady who we both liked a lot, but her job must have been way at the bottom of her list of priorities, because her mind was definitely elsewhere when she was at work; plus she was often chatting on her cell phone(against company regulations) instead of working. She used to chat on the phone while giving Donna a bed bath. Can you imagine!? She would hold the phone with one hand while washing Donna with the other. I was shocked when the new aide asked my permission before answering a call on her cell phone..."it's about my ride home. Is it O.K. if I pick it up?" she said. The other aide never once asked permission to answer her cell phone and chat away for as long as she wanted. Can you imagine someone doing this on any other job. She'd be out the door in a minute. But since there is no supervisor and they are alone on the job with the client, some of the aides think that they can get away with anything. She used to wash Donna with a soapy wash cloth and then just dry her off with a towel, not even bothering to rinse her off. I wonder if she washes her own face that way...I bet not. Anyway, the new aide is very nice, AND very competent. She changes the rinse water for washing Donna twice without Donna even asking her! She does twice the job that the old one did, and she's only been with us two days! There are some great people doing a very important and necessary job for very little pay. If the rich would only pay a bit more taxes, instead of getting tax cuts, the government could afford to pay these home health care workers a living wage instead of the $9 or $10 per hour they now get. Its a disgrace that they have to work for such ridiculously low wages, if you ask me! (Leave a comment)
November 5th, 2005
11:15 pm [Link]	Are we too stingy here in the U.S.? We've got two good aides who come for two hours in the AM to take care of Donna. One works Sat.-Mon. and the other Tues.-Fri. The Tues.-Fri. aide had a family emergency and had to take two weeks off. We had a substitute for only one of the days she was off. The agency couldn't find anyone to fill in the other 7 days! There's a shortage of qualified home health care workers. No one wants to do this kind of work for the low salary that they pay. If Donna didn't have me to take care of her for all those days, she would have been in big trouble. I also do the evening shift every day because the agency can't find anyone to work 6:00-8:00PM. If people with Donna's degree of disability don't have a loved one to help them out in emergencies, they have to be in an institution. They can't live alone in the community in their own apartment. That's a terrible shame! It's a reflection on our very uncaring government which won't provide sufficient funds so that the home health aides can be paid a living wage!!! How come Great Britain can manage to pay 20% higher salaries to their home health care workers? People like Donna get far better care over there as far as I can tell. What a terrible shame to provide such inadequate care to people like Donna!!! Should people who have so much to give be forced to live their whole lives in an institution? Would you want this for your own son or daughter? (Leave a comment)
October 29th, 2005
12:25 am [Link]	I want a life! Donna's going to go far one day, not only because she really wants to, but finally, she really BELIEVES that she DESERVES to have a normal life. Six years ago, when I first met her, she was convinced she didn't belong, and would never have a normal life. Tonight, before she went to sleep, I told her how proud I was of her. She has made so much progress in her attitude...from frustration and anger to happiness and hopefullness. "I want to have a life!" she told me. "I want to have a life like you!" Finally, I think she really believes she has that right!!! Let us hope God is listening to her brave heart. (Leave a comment)
October 16th, 2005
01:23 am [Link]	Friday we had another bad day with Access Link. It took 50 minutes for the bus to get us to a shopping mall less than 3 miles away. The bus had to first go to another mall to pick up two people there. We originally asked for a 2 o'clock pick-up, but could only get a 3:15 one...and I called tuesday, three days in advance of the trip. So we got to our destination at 4:08 and had to be ready for the return bus at 6:10. That left us very little time for lunch, a haircut for Donna, and shopping. If we were able to get the 2:00 bus we requested we would have had a much better time. It seems we have to plan every trip we want to make at least 4 days in advance. Doing anything on the spur of the moment is of course totally out of the question. Meeting someone for shopping or lunch is very difficult because the busses are so unreliable and inflexable. Plus some of the drivers are awful! They drive like total maniacs with people in wheelchairs on their bus. Where do they get these idiots? (Leave a comment)
September 29th, 2005
12:06 am [Link]	Walk a mile in her shoes. Monday I was on the phone for 25 minutes just to book one trip for Donna for Thursday. The first 20 minutes all I heard was "you are currently on the reservation line. Please continue to hold for the next available agent." After all this waiting you can't always get a bus for the times you want to be picked up and return home. Imagine if every time you wanted to go out you had to plan a trip 3 or 4 days in advance; then if you have a speech disability, you have to find someone willing to spend 20 or more minutes on hold to make the call for you...not very likely in most instances; then on the day when you finally get to go out, the bus comes an hour or more late and you lose an hour of your shopping(or whatever) time. Imagine this happening to yourself for every trip you want to make during the week. I know people who complain when they have to wait 20 minutes for a cab! Imagine waiting 3 or more DAYS to go out on an errand or meet with a friend. Many people like Donna get depressed by all this, and give up on life. We've seen it happen to all too many people. As Donna always says of the average able-bodied person, "they don't care, because it's not them. They never put themselves in my shoes." So true! (Leave a comment)
August 31st, 2005
08:19 pm [Link]	Left out in the Cold Well, it was another day stuck here in Long Branch with Donna, thanks to the shortage of busses for the disabled and the broken van lift. The van drives OK, so I could go out without Donna, but I never do that. She's been left out all of her life, so I don't like to go out and leave her here alone. Even if it means staying here in town being bored, I won't go out and leave her alone. When I'm invited to go places with friends or family, I tell them, "if Donna can't go, I'm not going." When I had a car and Donna could no longer get in the front seat because of her hip pain, I chose to stay here in town with her, even on my days off when I would have much preferred to be going somewhere more exiting/interesting. I never knew how isolated and cut off from the world many disabled people feel until I lived "in their shoes", so to speak. Most of my life I had access to a car and came and went as I pleased. Donna and others like her have never had that experience. When the lift was working on the van, Donna got to live like most of the rest of us do, and she LOVED it. We are both so frustrated now with this problem we are having with the van. I hope to finish making my CD soon (visit www.soundclick.com/lejaz for a sample of the music) and maybe I will be able to sell a few copies to make some money for the van lift. Who knows...I suppose anything's possible, if God wants it to be. (2 comments \| Leave a comment)
August 30th, 2005
11:49 pm [Link]	Off topic post I know this is off topic, but I want to post it anyway, because it is an important issue to me. I normally discuss Donna and her struggle to have a decent quality of life, but somehow I think this might be tangentially related, since it relates to the economy; and aid for people like Donna comes from tax revenue, which is an economic issue. Here is the post I got off the web. It was written by Rep. Jim McDermott: One Nation – Two Countries (12 comments ) The President, rested after five weeks of paid vacation, returns to the White House with new data showing so much is up under his Administration. Gasoline prices are up, dramatically. Oil Company profits are up, obscenely. And Americans know the sky is the limit in other important economic indicators as well. Bankruptcies are up. Poverty is up. And the number of uninsured Americans is way up. The President is proud of the state of the nation. He says so time and time, in one scripted, invitation-only, stage-managed event after another. The last time he saw an average American was when his motorcade whizzed by Cindy Sheehan on the side of a Texas road without stopping. But there was no time to stop and talk because there was another fundraiser to attend. Every year for the last four years, the Administration has shredded the hopes and aspirations of average Americans while it printed money for Republican benefactors. New census data recount a grim story for ordinary Americans over the last four years under this President and Republican majority. Poverty climbed to 12.7% under President George W. Bush. That’s one out of every nine Americans. The number of Americans who work but live in poverty increased by half a million on The President’s watch. So much for all those good jobs he claims. Americans without health insurance soared 5 million to over 45 million. With so much up under this President, is there anything down? Well, yes. Real median income among the working-age population has fallen. The percentage of people with employer based health care has dropped to a level last seen in 1933. The federal minimum wage stands at 69% of poverty, the lowest point in the last half century. And, last but not least, real family income for those in the lowest bracket went down 5% while the top bracket enjoyed a 40% increase. Put simply, the rich are getting a lot richer under this President and the other 80% of America is getting gouged at the pump. The President is turning America into a two country nation, one where the rich can afford $3 a gallon gas because they own the pump, and one where the vast majority of Americans can’t work enough hours or enough jobs to make ends meet. The middle class existed in the year 2000. If this President has his way, we will witness the fastest extinction in history of an entire economic class. (Leave a comment)

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