It has taken me since July of 2011 to continue my post titled “This can’t be” About our then 33 year old son being diagnosed with Young Onset Parkinson’s Disease =YOPD
My main reason for not “continuing” my previous post is that this has been so very difficult.
PD is progressive and continual with no cure. Initially for our son PD took his job. He had a good job in maintenance in our school corporation since before he was 20. Yet due to his chronic fatigue, tremor, stiffness, and lack of balance he just could not maintain his employment. This is so very hard for anyone- particularly a young man with a family to support. He was awarded SSDI upon his 1st application. His biggest loss besides the emotional one is that he lost his insurance benefits. When you get SSDI you aren’t eligible for medicare for two years. He gets some sort of catastrophic coverage; yet he has a monthly “spend down” of several hundred dollars before his coverage will help him with medications or Dr. visits. Heartbreaking! We do have a Neurologist who has become a family friend and see’s Tony without co-pay and gives him samples of medications when available. Tony has also been to the movement disorder clinic at Vanderbilt two times to have his diagnosis confirmed and to be sure he is on appropriate medications. Physical therapy would be good for Tony- It’s expensive and right now he cannot afford it.
Symptoms of Parkinson’s are so much more than just tremors
One problem Tony has (now 36) is he has spells when he falls constantly. And his arms aren’t quick enough to catch himself so he often hits his face. In the 1st two years of his diagnosis Tony lost most of his upper teeth due to falls. The kind of restorative dental work needed is beyond what he can consider affording. So besides loosing his ability to work he’s lost being able to eat many things and he’s lost his desire to smile
Tony still hasn’t been able to grasp his diagnosis beyond being totally devastated about it. Some might say “Oh he should be able to just get on with his new life now and stop focusing on his disease”. But these people have no idea how much Parkinson’s interferes with his life on a daily basis. For one thing he is unable to sleep. Apparently this is common to many with PD. He lays down and gets severe muscle cramps particularly in his calves. The only way he can cope with these cramps is to stand up. He says it is pure torture to try and stand when one is so exhausted. If he does get to sleep he has REM sleep disorder. He often is screaming and trying desperately in his sleep to keep intruders (that he hallucinates) out of his home. He has kicked holes into several walls. He has broken doors. He has moved furniture around the doors to try and keep these intruders out. When he wakes the next day he is usually in pain from the injuries he’s caused himself during these episodes.
Tony’s wife Laura gets very little sleep as these outbursts keep her from sleeping too. Laura has had to take extended leave from her part time job because she needs to be home to care for Tony. She can’t fathom the thought of him falling and hurting himself when no one is there. She also must try and catch up on some rest during the day. They have two children and Laura has taken over the responsibilities for them. Parkinson’s affects Tony’s cognition thus his decisions aren’t always appropriate. Laura has taken over paying bills and trying to make their limited income at least keep them in their home.
Due to the insurance situation Tony no longer takes the medications that might allow him to deal with his symptoms a little easier. Even the drugs for parkinson’s he takes less than prescribed because: #1 He can’t justify spending money on expensive medications, when they need to maintain a home and vehicle. #2 he is deeply concerned about the jerky and unpredictable movements that form the side effects of the medication are known as dyskinesias. It is clear that dyskinesias are caused by long-term use of Levodopa- thus Tony is afraid of the prescribed dose of these drugs. None of them cure PD; they just make the symptoms somewhat less and more tolerable.
I have so much to share and I will do my best to add posts about our son’s #YOPD monthly. Because this was an overdue catch-up It is longer than my regular posts will be.
PS you may enjoy a letter Tony wrote to a local paper regarding how our community has helped him.