Being able to share is important

The KDA Chat Room and Forum

The Kennedy's Disease Association (KDA) offers several opportunities for people living with Kennedy's Disease to interact. Two of my favorites are the chat room and forum. The chat room provides everyone a voice that is interested in discussing anything related to Kennedy's Disease. It is real time (live) and you never know what you will hear. Chat rooms are excellent vehicles to discuss current research, interact with researchers and other guests, as well as share your thoughts and opinions. Usually, a chat will have eight to fifteen people present. Because of the time constraints, many people outside the United States and Canada cannot actively participate. The chat room was my first interaction with others living with the disease and is how I ended up becoming involved with the KDA.

The forum gives everyone an opportunity to share thoughts and concerns, ask questions, or provide helpful advice. It is more structured since it is not live. The forum is an excellent place to share links on current research or other topics. No topic is sacred. The forum has a much larger audience since anyone can browse the topics at any time and provide comments. It is now my favorite form of communication with others living with the disease because often people do not feel comfortable asking questions in a chat room environment.

What I have learned through active participation in both venues is that:

• people need help finding answers to their questions and concerns
  
• people want to help others by sharing their experiences
  
• researchers and other professionals are willing to share their knowledge and insights to help those of us living with the disease
  

If you have not participated in a chat room or the forum, I can honestly say you are missing a unique opportunity to learn and to help others.

The Permobil Rocks!

Two weeks ago I wrote about my first impressions of my new wheelchair. Looking back twenty or thirties years, I would never have dreamed that that I would become excited over a wheelchair. Let me say it again, this chair rocks!

I am so thankful for the MDA Clinic and the ALS Coordinator who was there last November. She was intuitive enough to ask a few questions and persuasive enough to encourage me to see a "seating specialist" before buying a chair. The chair I had already picked out was a Jazzy with a lift seat. The coordinator was familiar with Kennedy's Disease. She took one look at my medical necessity form and recommended against buying that chair. She was so right. The Jazzy is a good chair and would have been fine for a few years. The Permobil, on the other hand, is not just for mobility. It enhances your life in a very comfortable way.

I will once again recommend that when the time is right (and you will know when it is), ask your doctor to recommend a seating specialist (occupation therapist) before moving ahead with a purchase. It is worth the time.