I've been around this site for a very long time. My daughter Allison has JHD and is defying the odds still living a good life after 14 symptomatic years. We have both been very active in the HD community and in clinical trials at Mass General. We live in upstate New York and love the rural lifestyle. She still gets out everyday and loves her life. Believe me, this is NOT typical after 14 years of JHD.

For the past 1 1/2 years we have received services from the Eddy Visiting Nurses, an agency based in Troy, New York. Their services have been just OK, but Allison does love her speech therapist Gail and her aide Tracie. Sadly, the two nurses we have had were both lacking in HD knowledge and this sometimes caused problems. When I asked to switch from the first nurse because she made Allison very uncomfortable, I was given an extremely hard time by their nursing director who called me stupid (I do have a doctorate level degree) and an unfit parent (due to HD I have been a single father for 30 years and have two great kids). Her prejudice was oh so obvious. I had to call an Eddy VP and director to facilitate the change.

Six relatively smooth months went by without incident until last week when I received a call from this same nursing supervisor who must have felt it was time to attack me again. She kept saying "a father should not be caring for his daughter. This is not good. This will not end well." I hung up on her and called the director. This time the director was not helpful. The lady called me back and started all over again. Again I hung up. On Monday morning a woman from the Eddy came to my house. I did not know her. She would not tell me what she wanted. She could not even tell me the name of Allison's illness. My 89 yr old in laws were visiting and I told her it was not a good time. What did she do? She called Adult Protective Services and told them my daughter was in danger. She told them I own a gun and am dangerous. I HAVE NEVER OWNED A GUN AND WOULD NOT EVEN KNOW HOW TO SHOOT ONE.

The next thing we knew, a swat team was at my door along with two APS investigators. It took them all of two minutes to determine that this was a bogus complaint. They apologized profusely but it was too late, the damage had been done. Believe me you never recover from armed men at your door. I sent letters to our care team, doctors, HD people, politicians, and friends. Out of fairness, I sent one to Michelle Mazzacco, the director of the Eddy. Michelle did not react well to my advocacy. She has used her contacts to "snuff" my pleas for help.

These folks even used Allison's primary care doctor to help them abuse the system. Unfortunately he fell for their lies and further stirred the pot. It was unfortunate that he over reacted because their actions have severely damaged us all, especially Allison and her elderly grandparents. They did not try to use Dr. Rosas our MGH HD doctor because she knows us too well and is too smart to be fooled by them.

After having a dozen reasons for their actions, the Eddy now has just one: Allison talked about assisted suicide. SHE SURE DID. Six months back the neighboring state of Vermont was debating the issue. Allison said to her nurse that she could understand why people might do it. Now they are using that as an excuse for their actions!

Today I stopped all Eddy services and asked the doctors office to transfer us to a new PCP. These people were engaged to help us and they did just the opposite. Fighting Huntington's Disease is a tough enough task without having to fight those who are supposed to be helping you.

Why do I tell you all this? Folks, it could happen to you. Be careful who you entrust your precious loved ones to. There is a pervasive ignorance when it comes to HD and the family often pays for this ignorance. As I said, I've been here a very long time, much longer than the 7 yrs my registration says. (we all had to re register at one time) I've seen other caregivers abused by an ignorant system. I've certainly seen patients abused. I consider myself relatively intelligent and can fight back. My daughter can't fight back without me. I know there are many folks who are also abused by the system. I know Steve and Marsha. Hell, I've been at this so long that I even know Arlo Guthrie. If you are still reading this, you must care. I need help fighting back. This can not stand. If you would like to help, please send me a pm and we'll go from there. I've seen this kind of stuff happen too much. This ignorance has to be stopped.

Thanks for reading!

Howard

Howard,

All i can start with is "what a freakin mess"!!! I have seen before, in my line of work, the abuse of power and the ensuing rolling ball of snow that develops when a state agency follows up on a possible report of child or adult abuse by a worker that is either given false or exagerated reports. Anyone who happens to be in the path of that "steamroller" of an investigation can find themselves flattened and helpless against the accusations. Agency workers can develop an exagerated sense of power and authority and if you happen to be a person who puts up resistance in a way that seems in any way compative then watch out as you may have armed them with "evidence" in their minds.
They get a possible report, they follow the books by engaging other appropriate agencies in acting on the report and intervening, but they fail to get right one important step in the process and that is simply that the investigator does not thoroughly examine and interview the accused subjects before determining if the report was a valid report or just from a biased individual. Their 1st response is "lock & load" and get the "endangered" person out of a reported situation and then secondly look further to see if the report was valid or not.
Such a shame that you and Allison were victims of a bunch of power hungry individuals who failed to do their jobs as they should have.
The government has again trambled and left in it's "wake" your individual rights and abused it's perceived authority. I have been aware they will always do this at 1st chance and better to learn from the situation and protect yourselves from them in the future. Call me perinoid if you wish , but history has shown often a citizen is forced to protect themselves from an authority that was intended to protect them instead.
If you intend to pursue a fight against them you need to be realistically sure in advance what your goal & the intended outcome for you and Allison is and if in the end you are willing to lay victim to the better cause.

Lizzieann

I am soo very sorry for you, Howard. I have met your daughter, and I know what a lovely woman she is and that you are a wonderful Father, this is an unbelievable horror story, Pat Wolf

Howard, while I don't know you, I feel as if I do from your posts. You are a kind, loving father and a wonderful advocate for your daughter. I am so very sorry that you have experienced this. Thank you for having the courage to share this story. I think you are amazing and I wish you the very best. I would be willing to help you.

Howard,

During my limited time being here and about have found the power of the word to be a powerful tool in dealing with organizations such as Eddy Visiting Nurses. A nice letter documenting your experiences, with names and dates, to the professional organization licensing Eddy with copies to your and their state medical practice oversight boards; to the people who recommended them to you; to Mass General - believe it is an HDSA COE - so Eddy gets on their don't use list, if they have one; and to the doctor who wrote the order for in home care will get their attention.

And then, a formal complaint to your Better Business Bureau, the BBB of the state Eddy is licensed in and I believe there is a national vehicle for complaints. And then, a letter to the editor of the news paper servicing their home base.

Oh yeah, each state has a department of social services - probably a good idea to CC them also.

Mix a cold one and watch the fireworks.

from the south of Maryland,

Fred Lothrop

Howard I know what a wonderful caring parent you are.
Again and again we parents who have taken on caring for an adult with HD must suffer the injustices to our families due to ignorance of so called educated medical professional.
If anyone understands this disease it is the people who love those with HD inspite of the difficulities caring for them.
And yet we spent our lives trying to explain that the rules in the standard care book don't always work for HD.
Home care nurses become frustrated because what they have always known to be the right way to care for a patient can be very very wrong when it comes to HD. They are not able to adjust to something different that would work.
What you went thru was horrible and to attempt to get an apology, forget it, they will never admit wrong doing.
But on the other hand know that there are people who do understand. It is a matter of sorting thru the barrel and throwing out the bad apples.
Sometimes I think I would love to seriously write a spoof on failed HD care attempts used to show just how stupid and pathetic people can be. . Sometimes laughter is the only way to get thru this.
Stay strong and know that 'we all get it here' on the website and are behind you 100%

Howard,
This is awful and unacceptable. I would consult an attorney. A false 911 call or filing a bogus police report is a crime.
Telling the police you had a gun in the house is an outright lie. Saying you were dangerous is slander.
I realize you are not out for monetary gain but legal action against such treatment may help put this injustice in
the spotlight.
Chris

Thanks everyone for your support! I have been running a writing campaign. Unfortunately, Michelle Mazzacco the Nursing agency VP is very friendly with the folks I am writing to and doing her best to thwart me. For example, she has been able to get APS to say it was not a frivolous complaint even though it was dismissed immediately. She has even been speaking with our Congressman Chris Gibson who I had hoped would help and initially gotten support from. On a better note, a supervisor from the county social services called me and said that "the Eddy has done wrong and is trying to cover their behind." Yes MGH is a center of excellence and is run by Dr. Rosas on of the most famous HD doctors. She understands what has happened. Today we have a visit with Allison's PCP who took part in this. Here is a letter I have faxed him in advance of this visit:

Dear Dr. XXXXidas,
On September 5, 2013, two nursing supervisors at the Eddy saw an opportunity to act on a months old grudge against me. These nurses had no direct role in the care of my daughter Allison yet seized upon their perceived chance for revenge. As you know Allison has suffered from Huntington's Disease for the past 14 years. HD is a disease which somehow brings out the worst of most people in the medical community. You seem very frustrated that I refused the services of Renesselaer County Mental Health. This refusal is at the advice of Dr. Diana Rosas, Allison's HD neurologist and a world renown HD doctor. She has seen the ill effects of HD treatment by inexperienced doctors (inc. prescriptions harmful to HD) and strongly recommended that Allison not be treated by these folks. This advice was used against me on 9/9 in the complaint to APS. If you feel that I deny Allison proper medical treatment, you could not be more wrong. I have fought to the end for the best care including my legendary battle with Laurel Lake for her to be included in the Crest E clinical trial.
We have enjoyed your care of Allison because although you lack HD experience (as do almost all doctors) you seemed like a decent and caring human being. What I know about the attack on my home on 9/9/2013 raises questions. According to Michelle Mazzacco (Eddy VP & director) it was at your recommendation that armed troopers come to my home. I hope that she is mistaken or exaggerating. Believe me, I hope you never have to experience a swat team barging into your home frightening your terminally ill daughter and very elderly in laws.
The folks in Boston are now well aware of the events of 9/5 & 9/9. They wish that you had conferred with them before signing off on the revengeful plot to harass me. If I have given you the impression that I am any more than a loving dedicated father to my daughter I have certainly failed. We visit you today with an open mind yet an easy solution is not currently on my radar. At the moment we currently have no therapy or aide services for Allison. We need a PCP willing to help us and not work against us.
Doctor, you were used by the two nursing supervisors to enact revenge against me. Unfortunately the person most hurt by this is your patient Allison. These kind of events are not uncommon in the HD community. Believe me, in my years of advocacy for HD families I have seen it often. Now being on the receiving end, I have a brand new perspective. Let's work together today for what's best for Allison. The county social service director called me, seems to understand the truth, and wants to help. I hope now you do also.
Sincerely,

Howard XXXX

The doctor's visit today went well. The doctor realizes he was duped.
Here is a letter going out to the President of Eddy VNA. Names have been redacted for my protection.



September 24, 1013
Michelle XXXXacco
Eddy VNA
433 River St. Suite 3000
Troy, NY 12180

Dear Michelle,
I have just had a 2 hour face to face meeting with Dr.XXXXdas and suffice it to say that he does NOT concur that there was any need to file a complaint with APS. I will next have a sit down meeting with the folks at APS and since they DID dismiss the complaint in just two minutes, I do not anticipate much difficulty with them concurring that it was unnecessary either. After all, they do have enough real issues to take up their time.
As I have said, facts are a stubborn thing. Michelle in your haste to so vehemently defend Jane and Marybeth, I now realize that YOU do not know the facts of what really transpired on 9/5, 9/6, and 9/9, and 9/10. There is no possible way that you could have risen to the position that you now hold by handling situations as you have this one. Your investigation is impotent as you have not interviewed most of the folks involved. I am confident that the independent agencies that I have investigating this matter will do a more thorough job.
Michelle, the Eddy VNA exists to help unfortunate people. You can not have rogue employees defaming families and scaring clients. I really have no interest in how you do or do not discipline your employees, but I do know that what happened to me and my family WILL NOT STAND. I will stand on every bully pulpit afforded me and shout from every rafter at my disposal until I am satisfied that nobody will ever be treated this way again. The HD community understands what happened. The folks at MGH are none too happy either. Dr. XXXXidas now realizes that he was duped. Next to learn the truth will be the folks at APS. You will not be able to use your corporate position to stop me. Your lawyer will not scare me off. The truth lies with us Michelle. I will see that everybody involved learns it.
In case you, your lawyer, or your bosses do not understand the plain facts here they are again:

1. About 8 months ago, we requested a nursing change because the nurse made my daughter very uncomfortable. Your nursing supervisors took great offense to this and initially refused to do it. I found your name on the internet, called you, and you made the change.
2. About 6 months ago the Vermont legislature was debating legalizing assisted suicide. My daughter heard it on the news and was discussing its merits in front of her nurse.
3. On 9/5 Allison had a difficult morning as HD patients will periodically have. I made the mistake of voicing my frustrations with the nurse that morning. Never did I threaten Allison or anybody. I simply voiced my frustration as any human being would.
4. On 9/5 an Eddy employee named Marybeth called me twice. She kept insisting that a male could not be a good caregiver and that my caring for my daughter would end badly. I hung up on her.
5. On 9/9 Eddy employee Jane PXXXX arrived at my house with nurse Barb MXXXX. Jane would not tell me what she wanted and could not name my daughter's illness. I told them that Barb was welcome but Jane was not.
6. After leaving my house very angry, Jane called APS and Dr. XXXXdas and filed complaints against me. Some of her issues were that Allison discussed assisted suicide (see#2); I discussed nursing homes (see #3); I owned a horse and was possibly manic (who doesn't own a horse in Stephentown?); I owned a chain saw and cut down trees (folks it's an Earthwise electric saw at that!). Jane had the gall to tell Dr. Leonodas that I owned a gun and was a danger to Allison and Eddy employees! (I do not own a gun, never have, probably never will)
7. On the morning of 9/9, your dispatcher Dawn called my home and told Allison's aide Tracie to leave as “I would be receiving company.” Tracie refused.
8. At about 1 pm on 9/9 I took my 89 year old in laws up to Bennington. The swat team apparently came and we were not there to welcome them.
9. At 4pm on 9/9 you called Tracie KXXXX into your office to meet with you, Jane, and Marybeth. You were fishing for anything you could use against me. You even asked Tracie what my sleeping patterns were and if I saw her outside of my house. She strongly let you know that our relationship was totally professional and that no we did not see each other outside of my house. Tracie's employment was threatened at this meeting.
10. About 9 am on 9/8 your dispatcher Dawn called and said that Tracie could not make it. She would not tell me why.
11. About 10 am on 9/8 two armed troopers and two APS investigators arrived IN my house. They left within minutes having found no danger to anyone. One of the investigators gave me her name and phone number and told me the complaint was without merit. My 89 year old in laws were terrified and went home after driving 1500 miles for a two day visit.

These are the facts, folks. As I like to say, facts are a stubborn thing. The folks who came here from the Eddy to care for Allison were kind caring folks. I have noticed that not one of them has spoken against us in this senseless tirade. I would like to implore Allison's nurse, Barb MXXXX, to stand up and say what is right. Barb appears to be a person of principle and I would hope threats from above do not stop her from speaking the truth. I would also like to thank Tracie from the bottom of my heart for standing up for us and risking her job. I only wish that she could still be Allison's aide. I am disappointed that Dr. Reed, as a physician sworn by the Hippocratic oath, has not taken a stronger stand. I'm sure I will be writing again soon as this does not appear to be heading to a quick resolution.
Sincerely,

Howard XXXX

Hugs Howard and a huge, huge wtg for being you and the courage to protect your daughter.
I too went through a very terrifying experience in the so called hands of the professionals.
And you are so right when it comes to HD the lack of knowledge is huge.
My husbands abuse came in the hospital,yes he was a very strong willed,independant person who did not like
to be helped or in his space,so there for he was comming across as aggressive.
At home its called a bad day or mood,but the minute you go into care it is called agressive behavour that in there little
minds once a incident happens even a slight one DRUGS DRUGS DRUGS. restraints for 5 days no food or water.
On oct 27 th 09 i placed my husband into there hands where apon little did i know they were going to almost kill him in a matter of three weeks.
I was arrested for speaking out on his behalf and charges were dropped ,but not after a night in jail and two or three court visits.Trauma was done ,still to this day even 3 years later i still live in fear of that day.
I was excluded from the so called professionals in his care plan they humoured me but behind my back ignored me.
For the next 3 weeks i watched a fully capable man weighing in at about 175 pounds, drop down to a mere skeleton and
was now sleeping 23 hours a day,and was mottling and turning yellow ,and blue lips and nails ,he had some small pressure sores that were ignored .i pleaded every day for 9 months to discontinue this new med it was not good for him made him angry,and he was allergic to the other,lips always swelled,and couldnt swallow. When i questioned why are you doing this to him there response was He has huntingtons disease this is the natural process of the disease and i would have to learn to except it lol,and suggested i get counsling omg!
Well as you guessed it I didnt except it,i fought and i fought and i fought till day after day after day ,letters to newspapers,and tv stations,and politicians i showed them all the photos of abuse ,i even showed the police they said sorry cant help it is legal for him to be treated that way A doctor is above the law here. SICK SICK SICK LAW
Iam in Canada so ignorance is world wide im thinking ,bless them i guess ,forgive them never.
I cared for my husband for over 8 years at home ,and they in a blink of an eye of me seeking a little extra help told me
i was not allowed to be near my husband for three months alone but always be accompained by another adult?
My mug shots where at the nurses station and full police report for all to read i was judged tried and hung ,as the courts never sent them a copy of my innocent charges.
Finally i put a tape in the room and caught them abusing my husband,one nurse fired and to well hopefull learned from
it all and are probably the two best nurse out there now. his story of abuse made headline news for 2 days ,i was so relieved to be heard finally. I knew he would be saved now.
In two or three days he was tranfered to a different hopst,and within a few months all his meds were dropped and others lowered. He has gained alot of weight back and is now thriving and has been since oct 5 of 2010.
I know live with PTSD and high anxiety and sleep on couch near phone and live in fear everyday that something like that is going to happen again.
I have it made so clear that iam the Soul decision maker in all his care needs even in dietary and meds and bowel care and in his daily routine, hear me ROAR ,if he even gets a tylenol without my knowledge .I trust no one anymore.
I go to see him everyday and believe me i make a point of keeping them on there toes a little reminder once in awhile.
That hey im still here and he is MY husband ,and he has RIGHTS and he has FEELINGS .
Im so sorry you had to go through what you did ,sounds absolutley traumatizing to me,hugs howard i sure a proud of you .
I never in a million years would of expected in the hands of the ones you are supposed to trust that such power they have to destroy a life and a family in the stroke of a pen.
Our journeys not over yet Howard stay strong hang on tight

Howard,

My God, the people who we count on to just give us some assistance can and will create havoc at will. I worry about that all the time, I am paying a caregiver to help a couple of hours a day and one day she saw me at Walmart and said, "Carla? Where is Tim" I informed her that Tim was at home watching TV. "He's at home by himself???" Yes, he is capable of being home alone for short periods.
Anyway, I got that feeling in my gut that tells me this lady might be some trouble. (Of course all in the name of Tim's well-being.) My problem is that I do need someone to assist while I am at work in the afternoon and also that Tim has become quite attached to her. So at this point I am just hoping for the best in regards to keeping her on. Tim tells everyone, and I mean everyone, very personal details. Worries me to death that someone will attempt something underhanded.
Howard your story gives me nightmares as well it should. If there is any way I can help you, I will. Message me if there is anything I can do. You are a wonderful dad and advocate for Phd's, our system is ripe for abuse. And there will always be someone out there with an agenda and they know what numbers to punch in to start a bunch of crap like this rolling.
God bless you and Allison and all of us out here struggling with this monster of a disease.

Carla