A Chair for Anne Marie with Huntington’s Disease
By Martina Tierney, OT & Clinical Director of Seating Matters
I want to share with you Anne Marie’s Story.
For me, Anne Marie and her family’s story is one as an OT that I hear about often, but it can be difficult to explain the discomfort and danger someone like Anne Marie could be in whilst sitting in a regular arm chair. Anne Marie and her family have kindly agreed to let us share their experiences, describing their frustrations of not being able to find a solution; that was until they found the Seating Matters Atlanta chair and Anne Marie’s life changed.
Anne Marie has Huntington’s Disease and receives 24 hour care. She lives in Milton Keynes, UK and is surrounded by a loving and supportive family, who like so many people we meet, only want the best care for their loved one.
It can be challenging to seat someone who has Huntington’s Disease. The symptoms include involuntary movements, making it unsafe and problematic when seated. In Anne Marie’s experience, she would slide from her arm chair every couple of minutes and would sometimes even end up on the floor. Not only was this frustrating, not to mention dangerous for Anne Marie, her family had to spend so much time lifting her and couldn’t leave her unattended for more than a few minutes at a time which caused an inevitable strain on the family.
Anne Marie’s son Liam and his partner Victoria play a huge part in caring for her so they have experienced first hand just how difficult it is to care for someone with Huntington’s Disease and the frustrations that come with it. Huntington’s Disease is an inherited genetic disorder causing the degeneration of nerve cells in the brain resulting in involuntary movements and neuromuscular deterioration.
Anne Marie used to sit in a rise recliner. “We were angry that there wasn’t a chair for her, it was incredibly frustrating. When you have a family member who has a debilitating condition and you don’t have the right equipment for their needs, it’s like the whole world is against you. It makes you feel like she is the only person in the world who has the condition and you ask yourself why is there nothing suitable? As she is peg fed it is dangerous for her to slide down
in the chair so it was scary and frustrating,” said Victoria.
Victoria took matters into her own hands and searched online and found the Atlanta chair. The Atlanta is a robust and durable chair which provides a safe and comfortable seat for those with vigorous involuntary movements while reducing the risk of sliding and falling from the chair.
Our Seating Specialist Conor visited Anne Marie in her home and brought a chair for her.
“Straight away she looked so comfortable and happy. When she was sat in her old chair, we had to tell her to sit up every few minutes and help her. In her new chair, for the first 40 minutes she sat without us having to move her.”
Hearing this brought me great joy. I am so proud to hear that the chairs I have designed are making such a big impact for people and their families.
Family members often play a big role and spend many hours caring for their loved ones. The Atlanta chair has given Anne Marie and her family some of that precious time back.
“We can enjoy our time with her rather than getting angry that she is falling from the chair.”
Victoria and Liam are even get much valued time back for themselves.
“When you work an 8 hour shift and you have picked Anne Marie up after her falling after several times and she is getting annoyed and frustrated, it can be such hard work and you just want to enjoy time with her. Now we can!”
I am delighted that we were able to help you Anne Marie, Victoria, Liam and the rest of the family. It is times like this that remind me why I do what I do. I love my job as an Occupational Therapist and knowing that not just Anne Marie has a better quality of life, but her whole family now does. Anne Marie and her family were happy for us to use their story as they felt it could help other people find a solution for seating someone with Huntington’s Disease.
If you would like to speak with a Seating Specialist about the Atlanta chair or would like to organise a FREE Seating Assessment, please contact us on 1300 001 050 or firstname.lastname@example.org
The purpose of this video is to give an overview of the product with some tips to consider on its use. This is not intended to be a substitute for professional or medical advice, diagnosis, prescription or treatment and does not constitute medical or other professional advice. For advice with your personal health or that of someone in your care, consult your doctor or appropriate medical professional.
In addition, the content of this video should not be interpreted as a predictor or guarantee of future financial or clinical outcomes with different patients. Clinicians and users must employ correct decision making, undertake proper assessments, education, comply with local regulations and ensure correct use of equipment.
If you’d like some support in person, you can contact us on 1300 001 050 or arrange for an appointment for a Seating Specialist to visit you, or email us at email@example.com