LIVING WITH A DISABILITY
Living with disabilities can be more than a little challenging, but with the help of caring people and a little humor, you can still enjoy life. Whether you are dealing with a physical or mental disability everyday life can be difficult. I have Bipolar Disorder and Parkinson’s disease and it has been interesting learning how to deal with it all. My name is Tonia.
I am not sure which I would prefer to live with if I had a choice but over the years I have found ways to deal with it when I just feel like giving up. My hands shake so badly sometimes that it make it difficult to write, cook and really doing anything with my hands. Leave it to my son to make me laugh when all I wanted to do was cry. He told me I could make great milkshakes without a blender. I just broke out laughing because there was some truth to that. At one point I was using a wheelchair because my legs just would not cooperate. Guess they are stubborn like me. My kids were very scared by that. As a mother it broke my heart to see them scared to come near me. So one night we decided to play Candy Land. It was the only time the kids did not fight about who was going to win because they were too busy laughing at me. They wanted to help me pick my card and move my character but I was determined to do it myself. Well the cards ended up on the floor and I knocked everyone off the board but it was so wonderful to hear my kids laughing so hard and forget about my disabilities. Cooking is always fun with shaky hands. I made mashed potatoes once and I think over half of them ended up on the floor. I told the kids we should just have a picnic. Who needs plates? Of course we did not do that but it helped me not get upset with myself because I put mashed potatoes on the floor. Every time I clean my house I am always laughing when I look at the ceiling and see little splatters of food up there. At least I can cook a little. I do get frustrated when I cannot write because my right hand is shaking too badly. I do use the computer to just talk into sometimes but I enjoy writing with pen and paper. I was not going to let anything keep me from being able to do it. I taught myself how to write left handed. That was interesting but I was proud of myself that I did it. It is the simple things that sometimes give you the most satisfaction.
I think I have a harder time with Bipolar. It is not something people just know about you and can see how you may need help. I do not even know all the time what I need from people. The ups and downs can be tiring. I wanted to get my college degree so badly but I was getting very overwhelmed with going full time and raising my kids as a single mom. I thought I could do anything and I did not want it to be any other way. That is the problem with mental disabilities. You feel you should be able to do what anyone else can and in the same way. It was actually going through college that made me have to ask for help. I realized it was okay and I did not have to be ashamed that I have any type of disability. If I wanted that college degree in my hand then I had to break through my own thoughts and allow people to help me. I had to accept that I could not handle going full time and that it would take me more time to get my degree. I had a hard time accepting that. I was ashamed of that. I wanted to show my kids that you can accomplish whatever your dreams no matter what you are dealing with. That is exactly what I did. I took part time classes and had some great instructors who worked with me and I got two degrees. I am very proud of that. A few years ago I never would have thought I would own a home and have some stability for my kids.
Here we are in our own home with a little yard. Nothing fancy but it is ours. Do I like that I have to have a payee? Not always but I have finally come to realize it has been the best thing for us.
I also have to come to realize that having these disabilities is not all a bad thing. I have done things I never would have because of them. Speaking to the legislature was a wonderful experience that I never expected to do. I am proud I was able to do that. Even just being able to speak at little events and being able to help others to not be afraid or ashamed of what they are suffering from is a great feeling. I have also met some people that I never would have who are huge supports for me. On those days when I am crying for no reason I can turn to them and they remind me that I am okay.
It is not my fault I feel this way. Sometimes you just need to hear that.
What we all need to remember is no matter what we are dealing with, we all have abilities and it is up to us to decide if we are going to let our disabilities hinder us or motivate us. Some days are easier than other and it will always be that way. I am thankful every day that my kids are healthy happy and I am still here to enjoy them. That is really what matters.The center received a call from Community Action in September of 2013 requesting assistance for one of their consumers who was overwhelmed with everything going on in her life. We were told that Barb has only been able to communicate through e-mail because she is so emotionally fragile; she finds it difficult to complete a conversation. Staff sent her an email stating we would like to help and encouraged her to write back. She did and soon staff was communicating with her daily. Barb was finally able to come to the center in October where she met with staff and completed an intake. Barb stated that her first husband died and her second marriage ended in divorce. She has two sons from her first marriage, one has Asperger’s Syndrome. Barb states that she has multiply disabilities of Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome and Syringomyelia.
She stated that she is losing her home due to foreclosure because she can no longer afford the payments. Barb does receive income from SSDI and a small retirement from her last job; where she had worked for 20 years until the pain stemming from her disabilities became so severe she could no longer work.
Barb also stated that because she had not filed her taxes for a few years, her son could not complete the forms for financial assistance to help pay for his tuition.
Community Action had assisted Barb in locating a realtor that helped Barb delay the process of foreclosure while he put her house on the market. He was able to sell her home in December. DCIL staff assisted Barb in applying for housing, they helped her in applying for Medicare Part D, Medicaid, the SNAP program and they also assisted her in obtaining Widows Benefits from SSA. Staff also assisted Barb in straightening out her taxes so her son could apply to college. In February of 2014 Barb’s goal of finding an apartment was met. Together, Barb and staff visited the Emergency Food Pantry to obtain some food while waiting for her SNAP application to be approved.
Barb has been doing much better and is settled into her new apartment. Her son was able to attend the second semester of college and her second son has been to the center meeting with staff. He states that he is interested in the drivers permit course
A Story of Triumph
In the summer of 2012, Ardith Williams suffered a stroke that turned her world upside down. It was just another day in the Williams’ residence when Ardith approached her husband, Clifford. She told him that she couldn’t see, she was blind, and she was in pain. Then, all of a sudden, Ardith wasn’t making sense when she spoke. It sounded like a different language when she talked to Cliff. Clifford knew right then it was time to rush her to the E.R.
In the aftermath, Ardith was left with limited mobility, weakness, and cognitive conditions. She was in the hospital for a couple of months and was eventually recuperated enough to leave. However, she still needed more rehab and stabilization. So, she went to Dakota Alpha.
Ardith was admitted to Dakota Alpha on her birthday, July 2nd. She was using a wheelchair when she first arrived; but, the most significant limitation was something called global aphasia. People with this disability cannot speak to or understand their environment and what is going on within it.
While at Dakota Alpha, Ardith participated in physical and occupational therapy, as well as speech therapy. Little by little, Ardith began to conquer her confines. Physical therapy got out of a wheelchair and walking with a walker again. With speech therapy, Ardith went from interpreting nothing, to reading small words, to small paragraphs. Ardith began to understand and communicate language again. See, it would have been easy for Ardith to give up hope, but, she didn’t. She worked closely with her therapists and gave it her all in hopes that she would get better. And she did; Ardith certainly has come so far from the stroke that could have ruined her life. With all of the progress that Ardith made at Dakota Alpha, they found that she no longer needed skilled nursing care. Ardith was going to go home.
Ardith transitioned back to her home in Mandan using the Money Follows the Person Grant on March 4th, 2013. Ardith received a ramp, a new shower, and a signature stamper. She was also connected with out-patient speech therapy so she can continue to keep making progress in communication. Her husband, Clifford, reports that he continues to see Ardith’s progress. When she first got home, she couldn’t recognize what a key does or what to do after she gets in the house. Now, he gives her the keys and points out which key will unlock the door. Then, she unlocks the door, goes inside, gets her shoes off, and relaxes without getting mixed up. Even after all of the improvement that Ardith has made, she keeps making progress.
Although Ardith has worked exceptionally hard to keep improving, she also had a loving hand to hold during these trying times. Something must be said about the support that Clifford gave Ardith throughout the last ten months. Getting Ardith to the hospital before it was too late was the first thing Clifford did. He was in the hospital with Ardith almost all of the time. Once Ardith was at Dakota Alpha, he came to see her practically every day for dinner. When it was nearly time for Ardith to come home, he couldn’t wait; to him, Ardith couldn’t come home soon enough. Clifford stayed by Ardith’s side, guided her when she was confused or frustrated, helped her make important decisions in her own best interests (not his), and he offered encouragement through this whole process. Clifford and Ardith’s love for each other and refusal to give up helped both of them, especially Ardith, pull through.
On January 10, 2017, we met Cole when he came into the Dakota Center for Independent Living office to study for his Drivers Permit test. Cole stated that he had taken this test before and failed. He stated that he could read well enough, but he did not know enough to pass the permit test. Cole is only 16 years old and in High School, with a dream of driving to a job. He stated that he had 'test anxiety', so we tested in every class that we did with Cole, in order to get him used to testing; that way there would be no fear. Cole started out learning the Signs and Signals of the road, by using flash cards. Then we went on to learning the Rules of the Road. Cole attended every class, watched the videos on different driving situations and gained more and more confidence. He completed every chapter test and stated that he understood the information. We worked together on turns and the Right of Way Law. Cole worked hard and overcame his fear of testing. On March 13, 2017, Cole went to the DMV and took his Driver's Permit Test and PASSED!!! Cole's goal was complete, and complete with a smile.
There is more to Lee than the Wilson's Disease. Lee loves to spend time with his horse and used to be a Bronc rider. He is funny, witty, and always trying to get people to smile. Lee is a 33 year old man with Wilson's Disease. For those of you who don't know what it is: Wilson's disease is a rare inherited disorder that causes the body to store too much copper. If your body cannot eliminate copper property, it accumulates and can damage the kidneys, brain, and eyes. Liver disease, central nervous system dysfunction, and even death can occur if not treated. However, when diagnosed and treated early, many people with Wilson's disease live normal lives. Lee was diagnosed with this in his 20's. For Lee, there were many challenges that have come along with this disease. Some of those challenges include some deep rooted anger, including outbursts, and other aggressive behaviors which has resulted in Lee being in several different placements during his short 33 years. Lee got involved with The Money Follows the Person Program and we were able to assist him with securing an apartment in Bismarck, and getting his apartment services set up. Since his transition in 2016, he has come a long way in which his speech has improved, his mood is significantly better, he has decreased outbursts. Because of his progress, the amount of time he needs assistance throughout the day has lessened, and he has a better quality of life. He is getting to spend more and more time with his horse, both riding and training. Riding his horse has given Lee muscle relaxation and core strength to help decrease some of the symptoms of the Wilson's Disease.