TransFatty Lives

I decided to do my last Neuro Note on the movie TransFatty Lives. One of the first things that Patrick says to his son as the movie is starting is that he doesn’t want him to be afraid of him and wants to connect with him but is having a hard time doing it. Patrick was a 30 year old artist when he was diagnosed with ALS. Once he was diagnosed with ALS, he decided to make films, but as his condition worsened the camera started to be focused on him and his journey.

It amazed me at how positive Patrick stayed. At one time he even says that “it is unfortunate but you can’t help it so you might as well stay positive.” I think this is something that everybody can learn from. When faced with knowing that he is was going to die, he continued to keep his humorous attitude. Even in the later stages, he continued to make jokes about his disease rather than being depressed about it or dwelling on the hardships that he is going through. I think this attitude is part of what lead him to finding Laura and later having a son. Laura said that she knew after about a week that they had a connection. I think it is so important how they emphasized that he was already well into his disease. Many times people don’t realize that somebody with a fatal disease can fall in love and have the same feelings as everybody else.

I have to say I was so worried that he would not be able to see his son. Before Sean was born, Patrick said that he knew he wouldn’t be able to hold him, but they showed how he was able to interact with him and how Sean was able to lay on him. I was so glad that Patrick was able to spend time with his son and got to experience the joys of being a dad. Even when he made the decision of getting a trach put it, it emphasized that he was doing it for his son so he could see him grow more. I felt like on Father’s Day when Patrick says that Laura had told him Sean didn’t want to see him and that he wanted a real dad with legs, it took away Patrick’s drive to live. At that point in the movie, the movie started to get more depressed and it started to seem more like Patrick was apologizing for still being alive.

Patrick then goes to Boston to go to a new facility that is made especially for people with ALS. This seemed to brighten his world again. He specifically says that he is humbled once he arrives to the new facility in Boston. The new facility went on many trips that enabled Patrick to enjoy his life again, including one trip to Florida where he was able to see Sean again. This facility gave Patrick back his life by having many different activities that he was able to take part in. At the end of the movie, Patrick said that his Sean was now 7. I truly think that him having a reason to live and having the human interaction rather than just laying in the bed helped him to not only have a more meaningful life, but to also live longer.

I really liked this movie and how it shows the journey that he went through from the start to the finish. I think this movie would be a great movie for any person going into a health profession because it doesn’t leave out the good or the bad that a person with ALS goes through and makes you see it in a different way.

Memory Mobile

                           

Susan is a 55 year old mother of two, who was diagnosed about 2 years ago with amyotrophic lateral sclerosis, also known as ALS. She loves scrapbooking and playing cards with her friends and family. She struggles with muscle weakness and fatigue. People with ALS also struggle with hand- eye coordination.  This activity works on Susan's fine motor skills, her grip strength, and maintaining her hand-eye coordination, since ALS is a degenerative disease.  When asked how she thinks she has become stronger due to this activity, she said that she is now able to pick things up easier using her fingers, her hand-eye coordination has improved and that even more important to her she has something to leave behind for her family. When I asked about publishing this on the internet with her picture, she was very excited and hoped that our intervention could give someone else an idea that would help others! 





Step 1: Get a metal coffee can. The coffee can that we used was about 5 to 6 inches in diameter. The key to this step is to make sure that the size of the coffee can is appropriate for hanging things. If the can is too small you are not able to incorporate many strands hanging down.

Step 2: Get the ribbon that you are going to use to hang things on. The best length for the ribbon that we found was to between the same length of the can to 1.5 times the length.


Step 3: Determine and find the things that you want to have hanging down on the ribbons. Susan and I chose to use cards, seashells, and beads. Susan enjoys playing cards with her family and friends so we thought those would be a way that she could write notes to her family and incorporate those on her memory mobile. The seashells that she chose to use were some that she and her family found at the beach on their last family vacation.

Step 4: Choose the covering and the pictures to cover the coffee can. The pictures can be of whatever you want. Susan chose to do pictures of her family and her dog, Lola.

Step 5: Making use of the coffee can! I poked holes in the lid of the coffee can for Susan, since we needed to use an icepick to poke them. The next step was taking the background and pictures that Susan chose and gluing them to the coffee can. We decided that Susan would cut her pictures and apply the sparkle ribbons to make it more like a scrapbook page.

Step 6: The ribbons and accessories! Susan chose the sea shells and beads that she liked the most to use on her memory mobile. She said that she is the queen of her family so she made sure to incorporate the queen cards on the center strand. The other cards that she chose were the ace of hearts and ace of diamonds because they incorporated things she says to her children:
 that they are loved and more precious than diamonds. Before she glued the cards to the ribbons, Susan wrote a little note on two of them for her family. She then slid the beads onto the ribbon and glued the cards and seashells to it.

Step 7: We waited until the next therapy session to put the ribbons into the holes in the lid. I put the ribbons through the holes and Susan tore off the tape and taped the ends of the ribbons to the inside of the lid. Once that was done we were able to attach the lid to the coffee can and glue it into place so it didn't fall off.

Ronald Reagan

Ronald Reagan was the 40th president from 1981-1989. Lauren backed up to when he was just in the early stages of Alzheimer's disease. Ronald was an optimist who always tried to see the glass as half full. He enjoyed acting, horseback riding, and working on his farm. He was diagnosed with Alzheimer's disease in 1994. Things that he struggled with were getting a good night's rest, forgetting things, people's names and faces. More so than worrying about himself, he worried about the additional stress that he would be putting on his wife, Nancy. Part of the interventions that Lauren came up were sleep management, working with a memory board, possibly making him a video explaining things, and training and caregiving for Nancy. I really liked that she included the things dealing with his wife since she is going to be the one taking care of him.

TedTalk by Alanna Shaikh

I am doing my neuro note on the Tedtalk, done by Alanna Shaikh, How I'm Preparing to get Alzheimer's. Alanna started out telling about her dad and how he meant so much to her. He was a college professor, bilingual, her hero, and her mentor. Alanna points out that Alzheimer’s is hereditary and that since it is in her family she is likely to also get it. Alzheimer’s isn’t something that someone can really avoid getting but instead of dreading the future, Alanna is trying to prepare herself for dealing with Alzheimer’s. She says that she is working on improving three things in her life: her hobbies, exercising more, and being a better person. When she talks about changing her hobbies, she explains that while dealing with Alzheimer’s the things that you are able to do are the things that your hands know how to do- like knitting and drawing. Next she addresses exercising more. In this section, Alanna talks about improving her strength and balance so that when she gets weaker she has longer before she is unable to do things. Lastly she talks about being a better person, like her dad. She says that her dad was somebody that once he lost everything else, people wanted to be around him because of the love that he showed people. I think this is a very good way to look at things when it comes to dealing with knowing that you have an increased chance for something. I think this is a good video to watch for people going into OT because it embraces the whole person and what they can do to help somebody in the early stages of Alzheimer’s.  

Shaikh, A. (2012, June). How I'm Preparing to get Alzheimer's [Video file]. Retrieved from https://www.ted.com/talks/alanna_shaikh_how_i_m_preparing_to_get_alzheimer_s#t-357019

Montel Williams

Montel Williams is a family man who is very active. Aside from being a family man, he is a tv host, radio voice, and an actor. Montel's symptoms started when he was in the military with pain behind his eyes. He deals with pain, fatigue and depression. He has actually tried to commit suicide twice due to the pain that he suffers with. As of right now, he is independent and still active. He seems very dedicated to staying active and in shape. He wants to be able to continue to be the husband, father, and provider that he is. I feel like Montel doesn't let his disability define him and like he is working to create a new way of viewing Multiple Sclerosis.

Dr. Remy Hadley

Lauren did her case study on Dr. Remy Hadley from the TV show House. Huntington's disease is a genetic disease. Her mother and brother both had Huntington's disease, which her mother died from. She is a doctor, who was actually tested against her will. She likes working, gardening, and exercising. Dr. Hadley said that her main challenges are feeding herself, drinking without spilling her drink, typing out her documentation and coordination. Some of the adaptive equipment that Lauren suggested she use was weighted utensils, cups with lids and straws, and possibly an iPad with a speaking tool to help with documentation at work. Lauren also mentioned that moderate exercise would be useful as long as it did not cause further fatigue.

Tedtalk by Robin Morgan

For this neuro note I decided to listen to a Tedtalk. I listened to the video “4 Powerful Poems of Parkinson’s and Growing Older” by Robin Morgan. Robin Morgan herself was diagnosed with Parkinson’s Disease 5 years ago. Once she was diagnosed she found out that women were often left out of medication trials and felt like it was her duty to help women have more of a presence in these trials. She read four of her poems in this video: “No Signs of Struggle,” “I’m Donating my Brain to Science,” “The Ghost Light,” and “This Dark Hour.” I am going to say a little bit about my favorite one of these- “No Signs of Struggle.” In this poem, she says “growing small requires enormity of will” and describes different things that a person with Parkinson’s deals with such as being the “new kid on the block” when in a room with others with Parkinson’s disease and the “irritating help from those who love you.” Since my Poppa had Parkinson’s I have wondered what it is like to have it and what goes through the person’s mind. I never thought about the person with Parkinson’s being irritated by their family all trying to help but I can understand it. I know my family was always helping my Poppa and I am sure some of it annoyed him or bugged him since he was not able to do it on his own. I also never thought about how it would be to go into a room where you know that everybody else in the room has gone through the same thing. I imagine it would be very hard to look at people further into their Parkinson’s journey than you and realize that is where you will be in time. It would be like looking into a glass ball to see your future. When she said that “growing small requires enormity of will,” at first it didn’t make sense to me but the more that I thought about it the more sense it made. It takes will power to know that you are going to grow small and become “less” than you are now. I think it would be so easy to give up and not have the will to push yourself forward when you know what your future holds. I enjoyed this Tedtalk and liked how it was first-hand experience about what a person thinks going through Parkinson’s Disease.

Morgan, R. (2015, May). 4 Powerful Poems about Parkinson’s and Growing Older [Video file]. Retrieved from https://www.ted.com/talks/robin_morgan_4_powerful_poems_about_parkinson_s_and_growing_older?utm_source=tedcomshare&utm_medium=referral&utm_campaign=tedspread