Letter to the Editor

Because mine is one of the Victorian families affected by Huntington's disease we subscribe to the AHDA newsletter which we have always found informative and encouraging.

Most of the items appearing in "Kaleidoscope" have been written by people who have been diagnosed with HD. In every case these people have been enormously positive and in every instance have shown great courage by putting their thoughts on paper.

We have a 47 year old son who resides in a nursing home and recently, one of our grand daughters tested positive for the HD gene. This remarkable young woman has shown great strength and courage in dealing with the diagnosis and has given others in our family something to be very proud of. Our respect and admiration for our grand daughter has no boundaries so I thought it might be opportune for a parent and grandparent to offer something to the newsletter.

Most members would not be aware that, on December 6th the Federal member for Isaacs, the Hon. Ms. Ann Corcoran, delivered a speech to Parliament which included reference to Huntington's disease. I would like to quote some extracts from that speech which might offer encouragement to other readers.

"I recently met with a constituent who has campaigned for many years to promote a greater understanding of a heavily stigmatised and often mismanaged disease, Huntington's disease.

The constituent lost his first wife, his mother-in-law and four sisters-in-law to Huntington's disease. His eldest son also suffers from the disease. Sadly, specialised care for Huntington's disease sufferers is almost non-existent and they are often placed in aged-care facilities. Given that management of the disease involves intensive mental and physical stimulation, aged-care facilities are entirely inappropriate for Huntington's sufferers.

The constituent explained how frustrated he has been over the years to raise awareness of this problem in political circles and in the wider community. Recent scientific developments have given some hope to sufferers and it is essential that, as a community, we give greater understanding and more effective support to the thousands of Huntington's carriers in our midst and to the many thousands who are destined to battle the disease....

I understand the constituent received a follow-up letter advising that the issue is already on the agenda of the Council of Australian Governments (COAG) and that is a strong indication the problem will be addressed sooner than later."

That news, along with the research being carried out by Dr. Anthony Hannan offers a glimmer of hope to all families who live in the shadow of Huntington's disease and hopefully generate a greater understanding within the general community.

Sincerely
Jim and Lorraine Rutherford

Acknowledgement: "Contact", AHDA (Vic.) Inc. Newletter, February/March 2006.

From the Executive Officer AHDA (NSW) INC.

Friday 10 February was a notable day in the campaign to remove young people with Huntington's Disease from aged care nursing homes. The Prime Minister and State Premiers collectively agreed to implement a new joint Commonwealth, State and Territory program to start to reduce the number of younger people with disabilities living in nursing homes. The program will commence in July 2006.
The full text of the Council of Australian Government (COAG) communiqué on this issue is shown elsewhere in this newsletter, together with a press release by the Young People in Nursing Homes National Alliance (YPINH).

Welcome as this decision is, now is not the time to relax our efforts. The commitment is a limited one - it promises only "a start" to reducing the numbers of young people in nursing homes; alternative long-term care options are to be provided only "where ... (they) can be made available".

The Alliance believes that "less than 1,000 of the 6,500 young people under the age of 65 living in nursing homes would benefit."

This issue is one in which the Association has been active, together with many other organisations under the banner of the Alliance. It will remain a focus for advocacy during 2006. You can assist as an individual by keeping up the pressure on your State and Federal parliamentarians.

If you have internet access, I recommend a visit to the YPINH website
(www.ypinh.org.au). It's a well-designed website that tells the human
stories behind the issue. It will give you the facts and ideas for a letter
or visit to your parliamentary representatives.

We were honoured to have the member for Ryde (the "local" member for our West Ryde office) and Deputy Premier, Mr John Watkins, present at our Annual General Meeting last year. We look forward to working with him this year to ensure that the implementation of the new program in NSW takes into account the needs of our Huntington's young people.

Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

COAG Promises Better Care

As featured in our editorial on Page 1, The Council of Australian Governments (COAG) met on 10 February 2006 to discuss how to provide better care for young people in nursing homes. Below is a COAG communiqué, released shortly after the meeting ended, and the response from The Young People In Nursing Homes National Alliance.

COAG Says: "Improving People's Care in Hospitals and Residential Settings

From July 2006, governments will implement a new joint Commonwealth, State and Territory program to start to reduce the number of younger people with disabilities living in nursing homes. The program will include:

" offering younger people with disabilities in residential aged care homes a care needs assessment;
" negotiating and providing appropriate alternative long-term care options, where it can be made available and this is what clients choose;
" developing and establishing new services and care options, including improved services within nursing homes; and
" reducing future admissions of younger people with disabilities to residential aged care.

The initial priority of the program will be for people under 50 years of age."

YPINHA Says: "Great Start But Less than One in Six will Benefit

The Young People in Nursing Homes National Alliance
today welcomed the decision by COAG to spend $244 million over five years getting young people out of aged care facilities.

YPINH director Dr Bronwyn Morkham said the commitment by the states and territories and the Federal Government was historic given the decades of inaction on the issue.

But she said the alliance believed less than 1,000 of the 6,500 young people under the age of 65 living in nursing homes would benefit.

"The challenge for governments is to put a permanent end to the terrible situation where young disabled people are forced to live in nursing homes among the elderly and dying," Dr Morkham said.

"This is a great start given the blame-shifting game that has been going on for too long between the Commonwealth and the States. But nobody can pretend this problem is now fixed."

"On average one person a day goes into a nursing home somewhere in Australia and the harsh reality is that young people as young as 10 will continue to go into nursing homes. It makes no sense to have young people in nursing homes. They don't get the care or rehabilitation they need to get their lives back and it is actually cheaper in the long-term to care for them in the community."

"The alliance will not stop its efforts to get the states and territories and the Commonwealth Government to work together on a permanent solution to this terrible problem."

Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

Living with a Death Sentence

Ellen Buckley grew up knowing she would contract - and likely die from - Huntington's Disease.

Tegan Taylor reports.

Saturday mornings are quiet at Colleen Woodcock's Carole Park home. A wind chime tinkles somewhere in the distance as Ms Woodcock and her daughter Ellen Buckley sit at the dining table smoking and enjoying one another's company.

But there is an intensity in the way Ms Woodcock gazes affectionately at her daughter and grasps her hand. She knows these easy Saturdays are numbered.

Ms Buckley, 37, has Huntington's Disease, an inherited condition that affects the body, mind and emotions.

While she is able to sit up at the table and be social now, she is already showing the effects of the painfully degenerative illness.

People with the Huntington's Disease gene normally develop the condition between the ages of 30 and 50. It becomes progressively worse over 15 to 25 years, resulting in death.

Symptoms include involuntary, jerky movements, difficulty swallowing, aggression, short-term memory loss and eventually dementia.

Her daughter's early symptoms were depression and mood swings, Ms Woodcock said.

Now, 18 months since she was diagnosed, her muscles jerk constantly, she cannot eat normal food and she has the beginnings of memory loss. Ms Buckley, speaking in difficult, slurred sentences, said the unceasing muscle jerking was one of the most frustrating aspects of the illness; she aches all over.

Sleep offers little respite as she can only manage about five hours a night with the help of medication.

A twinge of bitterness infuses Ms Woodcock's tone as she describes the disease and the way it is affecting her daughter.

If a child inherits the gene for Huntington's Disease, they are certain to develop the condition. Ms Woodcock said her former husband, Ms Buckley's father, never told her the disease ran in his family. She said she considered having a child who was at risk of developing the illness akin to giving someone the Aids virus.

"It's like giving someone the death sentence," Ms Woodcock said.

"The only way to stop it is to make a conscious, responsible decision not to have children."

Ms Woodcock was alerted to the Huntington's Disease line in her husband's family when a doctor turned up on her doorstep when she was seven months pregnant with Ms Buckley's younger brother. The doctor was following the disease through the family tree. Ms Buckley was three at the time.

Ms Buckley said knowing all her life that she was at risk of developing the illness made it easier to handle when the symptoms surfaced. At 21, she terminated a pregnancy, a decision she is now doubly grateful for having made.

All the arrangements for Ms Buckley's funeral, will and final wishes have already been made. She doesn't want a feeding tube, her ashes will be sent out to sea in a canoe, her organs will be donated and her brain given to scientific research.

Heavy decision to have to make while she is alive and well, but they allow the mother and daughter to now focus on the task at hand: making the most of every day and spreading awareness of the disease.

Ms Woodcock said she explained Huntington's Disease to anyone who would listen, including people in shopping centres.

None of Ms Buckley's doctors had ever seen a patient with the disease before she started showing symptoms.

It affects only seven people in 100,000, so when she is in hospital they use her to teach trainee doctors.

"This is her purpose in life, to educate the various medical professionals about Huntington's (disease)," Ms Woodcock said. "God only gives special people these things."

Sufferers urged to seek counselling

Huntington's Disease is a degenerative illness that affects the body, brain and emotions. The illness is inherited and does not "skip generations". Every person who inherits the gene is guaranteed to develop the illness in their lifetime, unless they die of another cause first.

People with the disease may experience mood swings, aggression, depression, memory loss, difficulties problem solving and dementia.

Physical symptoms include involuntary muscle movements, slurred speech and difficulty swallowing.

Genetic counsellors can help people identify whether they are at risk of developing Huntington's Disease. Queensland Clinical Genetic Service genetic counsellor Julie White said people chose to have counselling to help them make life decisions, such as whether or not to have children or travel.

Australian Huntington's Disease Association Queensland Welfare Coordinator Gwen Pratten said a process called pre-implantation genetic diagnosis (PGD) was available to people who had the Huntington's Disease gene but wanted to have children without giving them the disease.

The PGD process works like IVF, where embryos are scanned and only those free of the disease gene are implanted.

If you believe Huntington's Disease may run in your family or you would like to donate money, contact the Australian Huntington's Disease Association on 3391 8833.

Acknowledgment: "Queensland Times" Ipswich - 1st April, 2006.

Twenty Top Tips For Carers

From the Summer '96 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.
By Marge Demepsey and Sylvia Baago, Alzheimer Society of Niagara Region.
Reprinted from the Horizon, Huntington Society of Canada Newsletter.
1. Get help early -- counseling, assistance with caregiving duties, etc.
2. Involve your family from the beginning by sharing your concerns with them.
3. Access all the information you can about the disease and educate yourself as much as possible about its progression.
4. Have an awareness about the losses to come, such as incontinence, inability to dress, etc., so they are not totally unexpected.
5. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation, but not resolution, of your grief.
6. Appreciate your grief and seek out someone who understands it.
7. Recognize the signs of denial: for example, you insist, "I don't need any help." "Nothing's wrong. Everything's okay."
8. Acknowledge your right to feel emotionally off-balance.
9. Learn to "Let Go" from the start and share your caregiving burden. Your loved one can survive a few hours without you.
10. Forgive yourself for not being perfect.
11. Stop trying to be perfect: caring for someone with a chronic illness means your world has been turned upside down and you will probably have to compromise some of your personal standards of housekeeping, etc.
12. Join a support group early.
13. Take care of yourself -- physically and emotionally. Have regular checkups. Get as much rest and respite as possible. Eat well-balanced meals. Give yourself time to cry. Don't be afraid to acknowledge your feelings of anger, anxiety, helplessness, guilt and despair.
14. Hang on to your sense of Self. Keep up your regular activities as much as possible.
15. Take one day at a time, but don't neglect to plan for the future. Good planning can include getting a power of attorney, accessing community care early and filling out placement papers.
16. Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
17. Learn how to communicate differently with your loved one if cognitive and language abilities decline. Good communication strategies help to avoid frustration.
18. Make sure your family doctor is one who is willing to listen and understand.
19. Accept yourself for being human; even if you "lose it" sometimes, give yourself a pat on the back for doing the best you can.
20. Follow the action plan to avoid caregiver burnout.

Send comments to Renette Davis at: [email protected]
Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

Good Ole' fashioned love&

It was a busy morning, approximately 8.30 am, when an elderly gentleman in his 80s arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9.00 am.

I took his vital signs and had him take a seat, knowing it would be over an hour before someone would be able to see him. I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound.

On examination it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound. While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor's appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease. As we talked, and I finished dressing his wound, I asked whether she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him. "And you still go every morning, even though she doesn't know who you are?" He smiled as he patted my hand and said, "she doesn't know me, but I still know who she is."

That is the kind of love I want in my life. True love is neither physical, nor romantic. True love is an acceptance of all that is, has been, will be, and will not be.

Acknowledgement: The above article was sent in by one of our readers.

Fundraising

Raffle of Double Patchwork Quilt -
We are delighted with the response to this raffle. Many of our readers in regional areas supported the raffle by selling tickets in their local area. $1230.00 was raised and we are pleased to advise that Sandy Tansey, Ticket No. 0074 was the lucky winner. Sandy is thrilled to be the proud owner of this beautiful quilt. Thank you once again to Val Moran and the Little Mountain Quilters for donating the quilt. We do realise a tremendous amount of time and effort goes into the end product - thank you so much.

HD Awareness Day Fundraising
We would like to acknowledge the support given by the following people and community groups who so willingly participated in the HD Awareness Day activities. In addition to the money raised through the Patchwork Quilt Raffle ($1,230.00) an additional $3,000.00 was raised. Thank you to -

Ray Bellert, Anita Smith, Dawn Lawrence and the Acacia Ridge Community Centre

Carol Booker and the Caboolture Shire Council

Norm & Irene Golby and the Adventist Retirement Village Social Committee in Victoria Point.

Patrick and Hedy Keogh of Ipswich

Dagmar Ker and RSL Care in Caboolture

Pat O'Gorman and the Redcliffe Police Station

Sandra McDonald of the Sunshine Coast

June Shearer and Ethyl Fogerty & the Wynnum Manly Leagues Club

Townsville Family Support Group

Future Activities
Garage Sale - 8th July, 2006
Please refer to the enclosed flyer.
Sausage Sizzle - Bunnings -
Sunday 14th May at Mt. Gravatt. If you are able to volunteer a few hours on this date, please contact Barb at the office.

There will be another Sausage Sizzle at Bunnings, Capalaba later in the year.
Rotary Raffle - Prize 6' x 4' Car Trailer including Home and Gardening Equipment valued at $4000.00.
Our friends from the Acacia Ridge Rotary Club have offered their support once again by nominating the Association to participate in their upcoming raffle. The Raffle is drawn on the 27th June. We are looking into the possibility of joining the Rotary Club at a couple of venues to sell tickets. If you can help out this way, or alternatively agree to sell a book on our behalf, please contact the HD Office.

Bridge to Brisbane Run/Walk - Coming up in early August. Planning will be under way soon, however in the meantime keep the event in mind. It was a lot of fun last year and certainly raised considerable funds.

Pauls Bottle Caps -
At a recent Management Committee meeting, members decided to participate in the "Pauls Collect-A-Cap Fundraiser".

How it works: Get families and friends to collect specially marked Pauls Collect-A-Cap milk caps from Pauls Full Cream & Smarter White milk in 2 & 3 litre bottles. Send your caps into the HD Centre and we will distribute them to Pauls.

Please make sure the caps are clean as they are ground and recycled after collection. Ensure that only Pauls specially marked caps are collected (the yellow caps with the Collect-A-Cap logo), No blank caps please.

Pauls will contribute 10 cents to our fundraising efforts for every specially marked Pauls Collect-A-Cap collected on our behalf.

Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:

KG & C Gordon
R Ryan

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