Hudson Star Observer story by Meg Heaton

Thank you Meg Heaton, journalist at Hudson Star Observer, for your beautiful article on Robin and the FTD Disease. Your long time friendship has been such a blessing to us both and now your words truly exemplify where our life is today.

Click the link to read the article:

http://www.hudsonstarobserver.com/content/degenerative-brain-disease-changes-everything-area-realtor

dysphagia ... what it is

A symptom of FTD and ALS is the atrophy of muscles and especially within the throat area. This leads to difficulty swallowing which is called Dysphagia.

Here are some facts from Mayo Clinic on the disease:
-"Difficulty swallowing (dysphagia) means it takes more time and effort to move food or liquid from your mouth to your stomach. Difficulty swallowing may also be associated with pain. In some cases, you may not be able to swallow at all."

-"It takes about 50 pairs of muscles and nerves to accomplish the simple act of swallowing, and a number of conditions can interfere with this process."

-"Difficulty swallowing can lead to:

• Malnutrition and dehydration. Dysphagia can make it difficult for you to take in enough food and fluids to stay adequately nourished and hydrated. People with difficulty swallowing are at risk of malnutrition and dehydration.
• Respiratory problems. If food or liquid enters your airway (aspiration) as you attempt to swallow, respiratory problems or infections can occur, such as frequent bouts of pneumonia or upper respiratory infections."

Robin's Dysphagia symptom has really progressed in the past few weeks. We are having speech therapy evaluations to determine her diet and what is best for her nutrition. She is consuming only thickened liquids (has been for some time) and all pureed foods. This part of the disease is truly scary because she is not eating nearly as much and not receiving the nutrition need to help her immune system. We pray for a solution to get her the nutrients needed.

motherly instinct

Today was a bad day in the book of Robin. She didn't take her morning dose of meds which threw her off for the entire day and spiraling downwards. She was combative, aggressive, weeping tears and not eating. I arrived after work, was able to feed her meds, shower her, curl hair, mini pedicure, brush teeth, and then bring to her the National Night Out Party. 

The Alton was hosting a great front lawn party with music, dancing, food and fun. Robin stayed for quite some time onlooking the music and young kids dancing.

After a while we came back inside to settle Robin in. She sat on the couch and I sat next to her. As I am completely exhausted, I naturally laid my head on her lap. She gave me the motherly touch of stroking my hair and brushing it back, tickling my shoulder, and squeezing my hand. It was perfection.