Archive for May, 2009

The President is calling on Americans to share their health care stories to help build support for health care reform. As caregivers, we know firsthand the challenges involved in getting quality, safe, obtainable and affordable care for our loved ones. Many of us have witnessed our loved ones be misdiagnosed, given harmful drugs, denied care due to insurance companies or lack of funds, worry about long term care and more.

Here’s a chance to tell Washington your Lewy stories and hopefully bring more awareness to the challenges we face. By clicking here, you can take a few moments to make your voice heard. The instructions ask for a concise, personal and specific story. So, please, tell your story and get the word out.


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Dad received Red Sox tickets for his birthday. It just so happened the BoSox were going to be in town playing against the Angels just a few days after his birthday. It was a no-brainer to get tickets! All four of us made the ride to Anaheim and had a great time at the ball park. Although the Red Sox lost (boo!) it was fun and Dad had a great day. I think there might have been just as many Red Sox fans present as Angel fans. Red Sox nation is everywhere!

May 2009- Dad 75th, Mel 30th & Mother's Day 185 May 2009- Dad 75th, Mel 30th & Mother's Day 189 May 2009- Dad 75th, Mel 30th & Mother's Day 187 May 2009- Dad 75th, Mel 30th & Mother's Day 183 May 2009- Dad 75th, Mel 30th & Mother's Day 201 May 2009- Dad 75th, Mel 30th & Mother's Day 211

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As I mentioned before, we celebrated Dad’s 75th birthday. It was a rather small celebration as we’re hoping to have a big party for him back in Boston some time soon. We went out for dinner at one of Dad’s favorite restaurants and we returned home to enjoy some cake and open presents. Dad got some nice gifts including tickets to a Red Sox game (against the Angels), a customized Red Sox shirt, clothes and tickets to see the magician, David Copperfield. Here are some much overdue photos of Dad’s big day.

May 2009- Dad 75th, Mel 30th & Mother's Day 042 May 2009- Dad 75th, Mel 30th & Mother's Day 044

May 2009- Dad 75th, Mel 30th & Mother's Day 070 May 2009- Dad 75th, Mel 30th & Mother's Day 063 May 2009- Dad 75th, Mel 30th & Mother's Day 066

May 2009- Dad 75th, Mel 30th & Mother's Day 152 May 2009- Dad 75th, Mel 30th & Mother's Day 155 May 2009- Dad 75th, Mel 30th & Mother's Day 164

May 2009- Dad 75th, Mel 30th & Mother's Day 166 May 2009- Dad 75th, Mel 30th & Mother's Day 168

We bought these musical birthday cards that when you open them up, they play a memorable song. I think Dad really enjoyed them… here are two videos of him singing along with the cards.

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The hubs and I are away for the long holiday weekend so please excuse my absence in the meantime. I’ll be back soon but until then… Happy Memorial Day to everyone.

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I know, I have to post pics from Dad’s birthday weekend but in the mean time I’ll post about Dad’s recent visit to the VA clinic.

A while back we applied for VA benefits hoping Dad would be eligible and what do you know… he was accepted in to the VA system. (Finally something “good” works out for us). We made an appointment with a primary care physican and an appointment afterward to discuss some of the benefits and how it all works with an in-take processor.

Well, the first appointment was so entirely frustrating I just wanted to burst. We arrived 15 minutes early and checked in at the desk saying we had a 9:15am appointment with the doctor and this was Dad’s first visit. The receptionist then asks if we have a VA card and we say no, not yet. She gets all annoyed for some unknown reason and tells us we can’t use this window and to go around the corner. So, we go around the corner and a woman behind the glass flags us over. We tell her the same things and she responds with, why are you telling me this, you need to check in over there. So, Mum is like well, you flagged me down, I thought I was suppose to go here to check in for our appointment. The woman then acts as if Mom is an idiot and chases her away to what is supposedly the “eligibility desk.” Why we had to check in here, I don’t know but we’re following the directions of the first rude receptionist. Mom tells the guy the same speech and he calls someone to let them know we’re here for our appointment with the doctor and the in-take processor. Meanwhile the four witchy women at the first check-in desk are whinging about us behind the glass window. However, just because there is glass there doesn’t mean they were inaudible- we could hear everything they said. I should have gone up and told them how unprofessional and rude they were being but being the nice person that I am, I didn’t want to ruffle any feathers on our first visit. Instead, I sat in my chair fuming. They were completely rude, witchy and poking fun at our expense. I also witnessed their behavior with other people checking in- the same inappropriate treatment as we experienced. Based on my observations of these four receptionists, apparently the VA isn’t that busy, like we hear about all the time on the news, because these four “receptionists” did nothing but mock patients, gossip, complain, talk on their cell phones and sit around looking bored. Good to know our tax paying dollars pay them to do these highly productive tasks. Apparently, the only criteria you need to be hired by this particular VA clinic is to be a nasty witch and enjoy collecting a paycheck for sitting around doing nothing.

Eventually Mom & Dad are called to meet with the in-take processor and he goes over the benefits. Unfortunately, Dad won’t be getting any dental benefits which is too bad because he needs some work done- a few missing/cracked teeth! On the other hand, his medical care will be taken care of if we use the VA system. (Later, the doctor was honest with us and said we currently have some of the best doctors in the area and to stick with them- don’t go with the VA docs for neurology & psychiatry!) A great thing about being in the VA is that the prescriptions will only cost $8 max which will be a huge savings for us. At the completion of the appointment, the officer was surprised to hear we hadn’t been called for our PCP appointment yet. He went over to the four receptionists and basically told them we hadn’t been called and we’ve been here for an hour now. The first receptionist then says, we marked you as a NO-SHOW! What?! We’ve been here for over an hour! She then proceeds to start fighting with us saying we never said we had an appointment and of course we rehash our conversation with the first reception and the one that flagged us over and brushed us off. They both get all defensive and say we never told them we had an appointment… seriously. They were like vultures ready to attacks us- thank goodness for the glass window or they would have gone all crazy on us. It was definitely the most unprofessional behavior I’ve seen. The people in the waiting room were shocked and quite frankly said this is rather standard to receive horrible treatment from them. So much for taking care of their Veterans with honor and grace.

After all the hoopla settles down, the in-take coordinator gets us an appointment to come back the next day. We see the doctor and he is super nice- spends over an hour with us. Unfortunately he said he can’t prescribe us any of the drugs the neurologist or physciatrist order because only a VA neuro or psych can order those. We’d have to go the VA hospital which is over an hour away to see them and get prescriptions. He thought it best to just stay with our regular doctors. However, the prescriptions savings would be considerable so we’re considering going to see a VA neuro and psych just once to tell them the prescriptions Dad takes and have them write the script and then we’ll get them through the VA.

For what it’s worth, at the second visit, we did ask to speak with the office manager when we checked in. We were told she was “on a conference call” and is unavailable… um, sure she was- how convenient for you! We told the doctor what happened the day before and he said we should speak with the office manager and of course we told him she was on a conference call. And to add to it all, do you know what we received in the mail the other day… a notice from the VA saying their records show we failed to report for our appointment! The nerve! The note then went on to lay on a guilt trip saying since we pulled a “No-Show” we stole precious time away from another Veteran who could have received care… seriously, these people know how to strike a nerve… GRRRRR!

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The latest edition of the Lewy Body Dementia Association’s (LBDA) newsletter is out. Click here to read it. You can also subscribe to the LBDA’s digest by clicking here and completing the short form.

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Happy Mother’s Day to all the mothers out there. I hope you’re having a very special day.

To all those who have lost their Moms, my heart goes out to you. Remember the good times you had with them and that you carry on their memories.

Mom, simply put… I love you… for all that you are, all that you do and so much more.


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