I just wanted to hear some of your thoughts. I'm putting together a list of areas where we might be most effective if we target some effort in those areas.

Steve I

Hello,
I would like to see HDSA offer more comprehensive services such as the Muscular Dystrophy Association does. See: [www.mda.org] . Often, I feel we families are "drowning" while dealing with the disease until a cure or treatment is found.

I define it as being HERE, with all the support and latest research. I would not be able to do hd without this forum

Well put Sue!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If the HDSA wants to be by families it would help to have the feel it's for families too. The cure is a great endpoint. But I would love to see some advocacy on a personal level to take the edge off the suffering of the sufferer and the families who suffer along with them. No one can march in and make everything all better. I would never ask for that. But even a few rocks off the rocky road would help a lot. Wouldn't it be nice if when we apply for social security someone could look over the submission and tell ya you have it right? Just a little bit of confidence going into the process is relief from the stress that something is wrong and you won't be approved because you forgot something or misstated something or didn't mention a problem.

I was reminiscing an event through our local chapter. All it was was a simple Saturday picnic. No speaker, nothing about donations, no one recruiting for help. It was really just for fun. It was my first "event". It was fun.. and second one would be more fun. And it really produced at least two future volunteers. Me to a small extent.. and a great gal named Kathy who is a go getter and has helped a lot! It's ok to advocate fun. Sounds silly and slight but two volunteers at the very least for the cost fried chicken for 50 people... and a nice day for everyone. I have contacts I never had as well..and so does everyone else if they wanted them. Advocate social community amongst ourselves.

Support local advocacy from the natl.level on the local level political side. Winning small battles wins the war. Examples from small wins in a state house is encouraging elsewhere. We don't have to win the whole ball of wax in congress. If someone in TX has inroads to their statehouse, let the chapter pursue that and at least let them use the weight of the name of the HDSA in that advocacy.

Now that I think about it... anything in the culture of advocacy is cool by me. Build up in any direction that starts to work toward "loud and proud". I am no longer accepting that we are too tired to do things. We all have our limits and people may have to step in and out of helping on personal levels. But as a group there is a lot of spirit there and anything that starts to tap into it would be good. It will start slowly but I am pretty sure it would snowball. I have always thought if the HDSA would at first offer to work for us that we would eventually return the favor and work for them too.



Edited 1 time(s). Last edit at 05/08/2009 07:11PM by Eric.

When I attended my first support group meeting I had no idea what to expect or what I would get out of it. Debbie was in denial so I couldn't get her to go - it was a shot I was taking at having a better understanding of the disease. I needed to get a better feel for what "the HD experience" was like for others. I had no concept of the stages of progression, but soon learned.

It was also my first brush with personal advocacy. We were helping each other by sharing experiences. As I learned more about HD I was able to better answer questions about treatment, research etc. Some would share the names of HD specialists who they had a good experience with. Some would share what supplements or treatments seemed to be working for them. A few would share their latest personal loss or a personal success.

One of my favorite stories was from a soft spoken fellow named Anthony whose HD slowed him down to the point where he was distressed by people moving quickly around him - sometimes to the point of shoving him. He discovered that by using a cane suddenly people started deferring to him or being careful around him. He didn't need the cane - it was solely a coping strategy used to adjust the behavior of people around him.

These tidbits of information reveal themselves by simply asking "How have you been since we last got together? What's new in your life?"

Local support groups obviously don't require HDSA's involvement to make successful but I do think that HDSA could provide a more effective role in information sharing and education. Personally I feel that HDSA should be more aggressive in encouraging the formation of support groups (or even support networks).

I agree with Eric. HDSA should, and I believe soon will, do more to assist locally. But the question is "how"?

If the first communication from HDSA is not "Can you do a fundraiser?" then what do you think that communication should be?

Steve I

Advocacy is knowing the right person to write a letter to while providing free information anywhere of the best case scenario.
Before I appeared children with congenital hearing losses were having hearing tests at age 6 . By Jonathan birth in 2000 children were getting hearing tests at age 3. By the twins birth in 2004 newborns were getting hearing tests. This is my lifetime work. I have had a very good friend who is a MPP Ted Arnott and he passed every letter I wrote to the Premier.Eventually I was at the parties where the Premier was elected and took Reid with me too. Ernie Eves had a son named Justin who had a learning disability. Our school board was getting 36,000 for Reids TA which they refused to give a TA.Reid and I talked to Mr Eves at his party and Reid had a call from the premierès office the next day.
Federally I have written the Prime Minister for many years. I wanted the federal government to stop Ontario clawing back all the federal money for poor children. IE someone on welfare with kids gets money from the federal government and the provincial government takes the money. It is the sort of thing that is so greedy and stupid that ordinary people just don't realize this happens until it is your child with less money. I first dealt with this issue with the Hon Jean Cretien who passed me to Paul Martin MPP who became the honorable Mr Martin. The issue took place over many years and Ontario is admitting that they take the money.

Letters to the Prime Minister had to be handwritten perfectly for a long time. They did not consider a typed letter to be from the person, could be anyone. I have a couple of my mistakes pages in my file...Today you can email the Prime Minister and his letter staff forward your letter to the right department and you get a nice letter back from the PM. My last letter was imploring him to make sure terrorists did not get in Canada because we have no death penalty and thus terrorists could claim asylum here for ever.

Thank you Sue, Barb, Eric, and Dust for your input. I'm putting together a wish list based on the feedback on this thread. If anyone can direct me to other discussions on other message boards, on this topic, I'd appreciate it.

Marsha and I had a recent opportunity to spend a few hours with Louise Vetter, who is the new CEO of HDSA. We talked about the history of HDSA and her vision for the future. We feel that HDSA is going to do really well under her leadership.

Anytime there is a change in leadership there is a window of opportunity to influence the priorities of the new administration. Louise Vetter is listening and from our discussions with her she is definitely hearing.

I'm sure that a few of you are aware that I'm on the HDSA Board, but why this topic is of particular interest to me right now is that advocacy will be more strongly emphasized by the new administration and since I'm on the advocacy committee I'd like to be armed with what HD families need from HDSA as well as how HD families can help HDSA (outside of the normal fund-raising activities).

Who do you know is really successful at local HD advocacy? I'd like to talk to them.

Steve I

Hi STeve,
I am on the NJ Advocacy Committee (a committee of 2). To me, advocating is speaking out for the rights of those who cannot or are too shy to do so. THis can be on a personal level or on a National or legal level.

My father passed away in January (HD) and at the end, he needed to be placed in a nursing home. Did you know that there are only 30 medicaid beds in NJ dedicated to Huntington's patients....I advocated on a personal level by calling everyone i could think of, but mostly the administrator at the nursing home trying to get him in. Trying to find out who to contact to plea for more beds. All of my 'bugging' worked, but unfortunately, the bed became available on the day of his funeral.

On a legal, or national level, I advocated by lobbying my Congressman (twice) to co-sign the Disability bill. Both of my sisters are HD Pos. so it is very near and dear to me.

Another project we are working on is creating a team of folks to visit hospitals, emergency rooms, nursing homes, police stations, ambulance, etc...to educate them on HD, again this is on a personal level for me as my DAd was arrested and mistreated by a police officer who was unaware what huntington's was. He thought my Dad was 'lurching' at him..so he knocked him to the ground and arrested him.
Please feel free to contact me...I would love to do more.....
p.s. i am getting tested this coming friday...

I think one of the most important issues is to find LTC care for loved ones. Identify homes for people with HD in every state.

Steve,
Education and an increased awareness can go a long way towards helping families who are struggling to give their PHDs the best life that they can have. I'd like to see some Public service announcement type things to raise awareness, print ads too.

My son Tim was arrested also for trying to explain himself and "lurching" at a police officer, (after they tasered him twice). I took information to the police station about HD and tried to explain the disease to a cop who was just trying to get his shift over with. Tim is now on probation and I am so fearful of any involvement with the law. The thought of him in jail with this disease just scares me to death.

Also, help with estate planning would be very beneficial for families. I am aware of the Special Needs trust and consulted an attorney regarding setting this up. Thousands of dollars will need to be spent to get his trust set up, financial power of attorney..on and on. This is an incredible burden for families.

But I agree with Barb that this forum has been a real lifeline for all who find their way to it. Such a clearinghouse of information, caring people who understand and a place where we can come and just be ourselves. Good days and not so good, we can still come here and check in.

Thanks
Carla

Stevei,

I think that the main drive of any advocacy drive would be for better healthcare facilities.

The design and implementation of a center for pHd's would be the most tangible and valuable item this community could achieve quickly. Perhaps designing and building a center in every state that has the capablities of the best of the best. The design being a patient/attendent ratio, the types of beds and materials, even to the color of a facility or wing. We could use what we consider to be the top grade facility in the US as a model.

Once the design is captured, the next push would be to fund it using existing sources and streamline the application process. The nursing home industry could lend a hand in that respect.

Longer term goals would be for better family support to take care of pHd's. Some expansion of the existing center of excellece groups farther out from the few they have now.

Beyond that, perhaps the expansion of a medical group to focus on a more coherent treatment plan from neurologists. That could come from the expansion of the centers.

Research is nice, but that is being handled outside the HDSA in colleges and universities already. I think the funding of that is not as tangible as the results that the family support would give.

Family support?

jl

I think about 90% that I have heard relative to HD was not reliable.
the trail to find a shrink for me went to the neuros hospital first, his wife is a shrink but they don't have HD shrinks there,the search went back to the GP who sent it to the outpatient clinic at his hospital. Ross's shrink was going to try to find a shrink in the office. They decided not to do that and tried to send it to mcmaster.
I do have a psychiatric nurse in Guelph, and she made a referral to a local shrink whom I saw last week. He took a history and did a med review suggested more celexa, daily lorezepan, and he thought the stuff barb is taking is great. I only take one pill, because there is no research on meds combinations, I keep lorezepan for acute anxiety and I know it affects my memory so I'm not taking it every day. At least I have a menu., Next we go to the neuro next week and he can recommend to the GP who writes scripts.
and yet my mother saw a shrink every month for HD so this lack is the fault of the medical system today. I hate having HD an outpatient disease as there is no contact when needed.
A year ago the HD society cancelled my support group. Ross's shrink in the hospital said he must go to the support group so I'm going with him. If you can only have one support group it should the people with hd who get the care and attention.

Yesterday another phd turned up and we had a nice time.
the pool canceled my aquatics, I was upset, but found another class at a bad time for me. Chet was not hired for the summer so there will be yet another teacher.
Someone in a group asked me how long I expected the class to be run, I said "Until I die. I have a terminal illness. That's the problem, people making decisions don't even understand that HD is terminal.

Dang Fred.. one facility like that takes the full take of the the natl HDSA in a year. The dumpy little piece of crap T was in built in 1960's appraised at 1.1 million.. it's been fixed up but not nearly what you are talking about. It's just fine though. Facilities that exist now already supply for the physical need requirements. Staff with training specific to HD is what lacks. Training a whole staff for one or two pHD's at a time isn't always going to happen..training them for a wing is. We are talking about the HDSA and what they have to work with. It's not all that much really. I haven't looked lately but about 6 million a year. That's probably headed downwards if anything. I am not sure they can even afford a full time social worker with benefits in each state if that was their entire mission.

Mostley everybody said this in so many words. I would like to see more officials educated so when our family members have HD and get into situations they understand why they are acting the way they do. My brother was thrown in jail because he was so distraught that he wrecked up his house and the neihbors call the police on him, in the process of all of this he was in prison for a week, while in there he had atotal breakdown and never really accepted that he had HD, he would be agressive to anybody that would try to help or medicate him so there for no home care would take care of him because of his outburst. You can not tell me that these care homes dont have the proper training that is needed to take care of HD patients. I will say though Nipples convelesant home of Liverpool PA took the best care of him they could for eight years.

They don't have the training... some will bother to learn and others won't. The one that won't give the difficult pHD the boot. They are mostly difficult in a self inflicted wound kind of way. If they would accept certain things about HD certain other bad things can be avoided. You can lead a horse to water but you can't make a NH learn if they aren't willing. You found a good one and I did too. I am glad ya did.

well stevei, i have a bizarre interest...
that wont make any sense im sure, but it seems
something that would be important if we gave it a
chance...

i would like to see work done on aids and new inventions.
well i am talking about actual aids specifically for hd or
other neuro illnesses, that would make life easier for
phd's...

for instance, your comment about canes, i've thought about
canes,i've thought about guide dogs, i've wondered about
whether opthamologists or who ever could makes glasses,
that wrap around help give phd's wide angle views...
or beepers worn on ankles, that could beep when someone veers
off a line too much, or lets them know when they are stepping
off an edge; or how bout a life alert, like the commercial,
so your phd could always call for help...
how bout stuff to read one sentence at a time, or a phone that
could be easily used for texting and dialing...
just stuff we take for granted, but phd's have trouble doing
now...

i dont know, it sounds stupid, but, i wonder if we have
new technologies to come up with better tools for living
with hd... or i should say to improve quality of life thru
different stages, of neuro illnesses...

What I'm talking about is the design Eric. We specify that type of facility (at least one per state, maybe on per region with 2.5 million) capablity of helping people with HD.

There is a better forumula for the right mix of staff, and even the right furniture for pHD's.

If the HDSA could come up with the ideal setting with a formula for the services necessary, the job then would be to have each state mandate that for a region.

If the state paid more for said services, and there was a good profit movtive, we could establish these types of centers.

Joining forces with other ailment advocacy, like young people with young's disease or with brain injuries, they are left out in the cold too. The simularities in a "neuro psych" facility would justify the extra cost vs a mental hospital or the inadequate placement in a geriatric care facility we are all familiar with.

I think that would go a long way in helping families cope by making sure that when needed, a state of the art facility is available for pHD's 8-80.

Just a thought.

One of the problems with the patchwork of services is around the country, Fred, is that different groups lobby separately rather than together. I can see why they do that. Which strategy works better? To say that there's a lot of non-elderly people who need assisted living and nursing home care, please commit a lot of state resources for this purpose or to say, We have a rare disease and need this; it won't add too much to the state budget but will make a world of difference to us?

In Delaware, there are placements for people with traumatic brain injuries and those with neurodegenerative diseases are forbidden by law from accessing them. That's because families of people with traumatic brain injuries lobbied and we didn't.

Fred said: "If the HDSA could come up with the ideal setting with a formula for the services necessary, the job then would be to have each state mandate that for a region.

If the state paid more for said services, and there was a good profit movtive, we could establish these types of centers. "


Fred - I strongly disagree with "mandates". It presumes that states are able to AFFORD such expenditures - which is often not the case!

It's not a matter of "motivation", Fred - it's a matter of RESOURCES!

Oregon depends a great deal on trees for revenue. We have very strict forest-stewardship laws, which treat trees as a valuable renewable "crop".

And, of course, the inconvenient little issue exists that what do you DO, if the states were not able to AFFORD a "mandated" expenditure - FINE them???

What I really hate Fred, is that usually "mandates" are usually imposed by those who haven't a clue about the local economies that they're imposing them on.

Fred, you have always claimed to be against a central "government" infringing on individual rights!

If a state is given a "mandate" - without being given corresponding FUNDS - then what possible use is that?

I think it's disingenuous to equate "mandate" with "motivation".

Surely, you know better!

jl



Edited 1 time(s). Last edit at 05/25/2009 09:04AM by jl.