A good sponge bath can be as cleansing as a tub bath , if the person is doing a good job . A bath in the tub or a shower for many people is more relaxing or invigorating . Yet , on the other hand some who become sick with different illnesses , no longer enjoy a tub bath or shower . If a patient is getting a really good quality personal care sesion ; I would not worry about that person . But that does include good peri care . All my best. db

Marsha, I wrote a message here last night but it is not listed so I must have done something wrong. I have talked to my daughter-in-law and she has not been able to provide helpful information. She is in corporate law and those are the only attorneys she knows in Colorado and she said that is not what you need. Also those she know charge $400-$500 per hour. She suggested that you get intouch with the Colorado Bar Association or public defenders, I think you have already tried that route. Also, she thought that the Center of Excellance should be able to offer you some help by providing information about HD and how it affects the brain, personality and behaviour, etc. She thought the Colorado Chapter of HDSA should be of assistance, I think it may be the Rocky Mountain Chapter or Support group. She said when they were there they were very active and had a wonderful social worker, however the social worker moved to California and she does not know who it is now. I am sorry that I do not have more helpful information for you. If she comes up with someone I will let you know.

As of now things have worked out with home health for Michelle and they decided to leave things as they were after the traumitized her with trying to make changes. She has settled down as of today though. My daughter-in-law (she is their attorney) got involved as did my daughter who is a physical therapist (does not live here but talked to them by phone) so the administrator backed down. Also, may daughter told her she wanted it in writing and if she had further changes she was to call her first. Michelle's tests did not show anything except a slight elevation in her liver enzymes.
Fred, I will think about what you said but I really want to keep her at home. Thanks
DB, I know a bed bath can be good, but Michelle would not be happy with that every day. She has always been very particular about her hygiene and her appearance. I think she needs to still be able to feel as good as possible about herself. I know that will come but the time is not now. Thanks for you encouragement.



Edited 1 time(s). Last edit at 03/08/2007 10:15PM by AL.

Thank you for checking with your daughter in law for me. I contacted all of the above and have been very disapointed in the response I got from the COE and the Co chapter of HDSA. I have been on the computer all evening long with this stuff and am now looking at some TV stations there to contact. I will save it for tomorrow though because I am so tired.

I am glad things are better for Michelle. Wow, you are blessed in the advocate department! Now that is what I call Pro-active! Good for you!

How about seeing if your state congressman, senator, etc. would help in this case. Also, would there be a local HD clinic site near your daughter that would intervene in your behalf as well?

I will pray for help for your daughter and I know she will get home soon.

Subject: Link to State-by-State Media Resource Guide
URL: [huntingtondisease.tripod.com]

Hi Marsha

I just wanted to give you the above link to one of my sites on Advocacy where you can find all the media contacts in a specific city or state. At the bottom of the page click on "Media Guide" then click Colorado on the map. This site hasn't been updated in awhile [HDSA info is outdated], but the government links still work!

I wish one of us had the right answers or contact information for you to help your daughter! Like others, I'm a strong believer in using every resource available to help bring awareness to any injustice being done to someone with HD! In too many cases we have to be their "voice"in trying to get the services or support they have a constitutional right to, but are being denied! The unfortunate part is we are constantly hitting our heads against that proverbal brick wall of "uneducated" organizations and professionals and typically wind up being the bloodied and battered victim along with our loved one!

When it comes to our great system of Justice in this country all too often we are confronted by individuals who have forgotten what "justice" and "civil rights" of our citizens mean! That's when you've got to use every resource available to refresh them, including going to the media to solicit their help!!

Fred is right, you need a sensational "headline" to grab the interest of a report whether it's TV or the newspaper. Marsha Miller wrote an article "Self Advocacy - Equipping Yourself and Preparing Your Approach" dated 7-26-06 but darned if I can find the link to that right now!!! I have an document put together on "Creating a Press Release" which basically address getting your issues across to any media! A couple of the suggestions from it are below. Substitue "press release" with your personal story on your daughter.


Love
Jean

Make it newsworthy

It is difficult to define a good news story but the best are new, unusual or topical. Think about how your story compares with others and what you can do to make your story stand out. National media will only usually pick up a local story if they can see that it might be a more general concern or may be the start of a wider trend. Make these associations for the journalists and they will be more likely to respond to your message. If your story is particularly emotive or controversial, the human-interest angle is another tried and tested method for attracting hardened hacks. While no one can guarantee your press release will be published or used for an article, there are things you can do to improve your chances. The biggest obstacle to most press releases is the release itself.

When writing your press release, it should be:

Concise - editors receive hundreds of press releases a week (perhaps more) and appreciate releases that are brief and to the point.

Well-written - a good way to ensure your press release ends up in the wastebasket is: bad spelling, poor grammar, and illogical or unsubstantiated claims.

Factual - stick to logical and substantiated claims, avoiding statements of belief: we're the best, the cheapest, etc.

Honest - avoid the padded quotes by company officers; even if they are experts, they come across as biased. If used, stick to the facts.
Timely - if your press release isn't topical, consider incorporating it with a recent news event -- but don't stretch it.

What editors really want is for you to help them do their job. A news releases may only have as little as 30 seconds to capture the reader's attention. Pitts, and other media experts, offer these tips for writing an effective news release:

Explain the topic in the headline; make it catchy and use it to peak interest.

Be brief and to the point; find a way to cut through the clutter.

Capture all the important information in the first two paragraphs.

Keep the release within two pages; double-spacing is easier to read.

Use survey results when possible; they generally get people to stop and take notice.

Make sure news releases are well-written and present a professional image.

Add a visual if available to help illustrate the topic.

For topics, think seasonally. For example, you may want to provide tips on preparing a vehicle for winter to your local media.

Include name, address, telephone number, e-mail, etc. for more information, and the hours that the information source is available.

Use number marks (###) to indicate the end of the release.

Be persistent!!!

Resource that might help?

Marsha - has anyone suggested you call the NDRN?

Love
Jean

National Disability Rights Network (NDRN)
[www.napas.org]
900 Second Street NE, Suite 211
Washington, DC 20002
Phone: (202) 408-9514
Fax : (202) 408-9520
TTY: (202) 408-9521

Email Question on Criminal Justice or Juvenile Justice to:
Judith Storandt: judith.storandt@ndrn.org

The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

When to Contact Your State P&A / CAP
[www.napas.org]
Criminal Justice

If someone you know with a disability is in JAIL call the P&A in your state or territory to find out

What their rights are.

How to get their medication to them

What to do if you believe the person may be in danger of harming himself/herself

If someone you know with a disability is in PRISON call the P&A in your state or territory to find out

What their rights are

How they can get mental health services

What they can do before getting out of prison to have their benefits, such as Social Security, restored

Also call your P&A if

You receive a letter from Social Security stating that you are losing your benefits because you are a ?fugitive felon?

Then I found these a few weeks ago, but guess I forgot to post them??!!

COLORADO RESOURCES????

Colorado State Public Defender
110 16th St., Suite 800
Denver, CO 80202
PHONE: 303.620.4888 - FAX: 303.620.4931
Email: defenders@state.co.us
[www.state.co.us]
The single overriding objective of the Office of the Colorado State Public Defender is to provide reasonable and effective criminal defense representation for indigent individuals who are charged with the commission of a crime in Colorado. The right to counsel is established by both the United States and Colorado Constitutions.

Colorado Legal Services
[coloradolegalservices.org]
1905 Sherman, Ste. 400
Denver, CO 80203
303.837.1313
Kind of Cases they can help with: [www.coloradolegalservices.org]


The Legal Center
Please note, The Legal Center does not handle cases in which the legal expertise is available, such as divorces, custody cases, estate planning, criminal matters, or assistance with obtaining guardianship. We will make every effort to refer you to appropriate sources of assistance when they exist.

The Legal Center
455 Sherman Street, Suite 130
Denver, CO 80203
Phone: 303-722-0300 Voice/TDD \ 800-288-1376
Fax: 303-722-0720
E-Mail: tlcmail@thelegalcenter.org
Website: [www.thelegalcenter.org]

I am trying to find out if there is a local news station that does a shame on you type thing that they do around here. There has to be someone that does that kind of work.

Maybe trying to contact the Governor's office. Below is the e-mail, phone and fax numbers.

303 866 2471
303 866 2003
Governor.ritter@state.co.us

Also below is the CO Mental Health Association. They have an advocacy department. That might be the best bet right now.


The Public Policy & Advocacy program works to increase access to quality mental health treatment in both the public and private sector. Community-based systems of care and early intervention are emphasized. MHAC advocates on a policy, systems and individual level on behalf of consumers, families, and providers, as appropriate. Legislative Education Day and the Mental Health/Substance Abuse Summit are key program events.

Please visit our Public Policy and Advocacy Page for more information or contact:

Chris Habgood, Director of Public Policy
720-208-2224
Chabgood@mhacolorado.org

Kate Adams, Grassroots and Advocacy Coordinator
720-208-2233
KAdams@mhacolorado.org




I am also trying to find out if there is a local politician in the CO area that would be sympathetic to Heather's situation.

I wish I could do more and everything takes so long.

Good luck

Stacy-NJ

Marsha, i know there is a couple of things that would be really good to stress. Not just that she has HD and what it is, go for the tears, because that is what this is about. Make sure they know that your daughter not only has HD, that it is terminal, but that she got to get the news that she is dying, while in prison, all by herself! And for what, taking her boyfriends truck??? Say you dont know how many Christmases she has left, etc, but she already missed this one. The part of your story that really gets me, is something you said in a recent post. You said they have told you they are waiting for her to become competent, and then the part that really got me was, and we can wait, we made someone else wait, what did you say, two and a half years or something, so someone else took two and a half years, but we waited, and they finally became competent! Tell them she needs to be able to be in research studies. Stress is real bad for hd, she needs to be able to try and fight this stupid disease. I am so angry for you marsha.

Thank you Barb, you are very compassionate person. I get so angry at times that I do things I shouldn't out of that anger. But it is all going to work out. Today is a better day and now I finally have some contacts so it will work out-it has to. So I am taking a deep breath Barb so let's pretend that we are getting our massage from Zach and he has found the trigger points and all our stress is leaving. AAHHH! Thank you for being such a good person Barb.

Thanks Jean and Stacy! Now I will be up all night reading! Jean I never heard of NDRN. Wow, there is lots of stuff here

What can we do to help marsha, this is insane. Her daughter has to find out she has a terminal illness while in jail, for taking the boyfriends truck, i dont get it.

I know Barb, i dont get it either. I never ever thought she would be in this long, its crazy! It should have been resolved ages ago.

NANCY GRACE.....a letter to her might get some attention and some legal help.

The civil rights issue is important in the Federal system, because the only way we could be sued individually for our medical care of federal inmates was if we violated their civil rights by refusing them treatment. (called a Bivens action). There may be a similar Colorado statute.

Congressmen from Colorado? Governor? Patient advocate's office in state govt?

we could write letters to the newspaper editor if you could let us know and give us permission. I think you need guardianship.

Apple

I now have someone there who is trying to help Heather. I was also asked by 3 different people not to go to the media for fear of making the situation worse. There are several people here (Tn) who are going to write friendly letters to the prosecution for me. I don't know if it will help or not as they already have 1 letter written by the man who owns the truck, asking for her release and explaining that the man who had her arrested has since then stole the truck and tried to sell it at a local car sales lot. The defense att has now sent me the correspondence he has had via e-mail with the prosecution and what they are saying makes no sense to me.

My patience has worn thin. But I don't want to do anything to make it worse for Heather. I hope this new contact I have will help. She is taking up her time to do this and I appreciate it so much.

Barb, thanks for being such a wonderful friend throughout this mess. I know that everything is going to work out. Thanks for being there for me and Heather. Thanks to all of you from the bottom of my heart. Don't know what I would have done these last few months if it had not been for this place. Things are looking up.

Absolutely awesome Apple! Guys, apple just sent me an article about a law suit settled for a "competency wait list" at the same place Heather is at!

dear Marsha,
I am so glad to hear that things are picking up,this must be very tough for you.All through this episode you have fought as hard as is humanly possible and maintained your sanity and kept a sense of humour.I think you should give yourself a pat on the back.You are determined in your fight and I hope that it ends soon and Heather comes home to where she belongs.
Take good care.
Gordon

Marsha,
I am soo happy and relieved that there seems to be a light at the end of the tunnel! Through all of these sources there should be an answer. Nancy Grace sounds great if all else fails. I know you are exhausted but you have perserved and remained Heather's voice! You are an awesome mother. I wish I could help you, I will continue to keep you in my thoughts and prayers.

My daughter-in-law, Leslie and I had a conversation about Heather?s case this morning. She said that it seemed that your attorney was doing what he could to resolve this. She also thought that a letter writing campaign might be helpful but said that it should be discussed with your attorney first. She pointed out that the DA could 1. ignore the letters completely, 2. be moved by them and be more understanding of Heather or 3. dig his heels in and get even tougher with the case. Your attorney knows the DA personally and is a better judge of the reaction might be than we are. She pointed out that any DA is a DA because of his beliefs on the criminal justice system. He is not a public defender with a public defender?s beliefs. Caution.

She said that in some jurisdictions there are mental health courts, much like drug court where the person does not have to go through the regular court system. It might be worth asking your attorney if there is such a court there and if Heather might be able to be tried in that system. Your attorney will know if there is a way to get guardianship in TN only and not have to get it in both locations.

She also said that if it is possible to get guardianship now the DA might be more inclined to release Heather to a guardian rather than ?just release? her on her own.

You might call the mental health groups and the HD groups to get help. Legal aid and legal clinics at law schools might be able to help, too. But again, talk with your attorney. He is the best help you have right now. But it sounds like guardianships are not a part of your attorney?s practice and he might welcome help in that area.

It would also seem useful to forward the article on the similar case to your attorney. Leslie said she would call around next week to see if she could get any ideas for you to pursue. Maggie

I really hope you get your daughter back home Marsha as quickly as possible, I have been following whats happened and hopefully it will be sorted out soon. I don't know how you have coped but you just have to somehow.
Thinking of you both.
Isnt everyone on here wonderful with all their support?