Our son & Young Onset Parkinson’s Disease

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.

6 Responses to “Our son & Young Onset Parkinson’s Disease”

  1. APDA November 19, 2013 at 7:42 AM #

    This story is so touching, and we want you to know that here at APDA we are here to help as much as we can:
    Contact Julie Sacks at our YOPD Center 877-223-3801
    The APDA National Young Onset Center focuses on developing education and support services that address the unique needs of young people with Parkinson’s disease, their family members and friends as well as their healthcare team.

    The Center and its staff are dedicated to creating opportunities for you to better understand and live with YOPD. Our new Young Onset Resource Guide does just that; it provides you with assistance and direction during what might otherwise be a confusing and overwhelming time.

    By developing a relationship with our Center, you not only have access to young onset-specific information and resources, you are able to receive personalized support while at the same time becoming part of the nation’s largest grass roots PD organization.

    The American Parkinson Disease Association, Inc. was founded in 1961 to “ease the burden and find a cure” for Parkinson’s disease. Headquartered in New York, the organization focuses its energies on research, patient services, education and raising public awareness about the disease. APDA supports nine Centers for Advanced Research, 60 regional Information and Referral (I&R) Centers, 56 chapters, and 250 affiliated support groups nationwide. Each year, the APDA Scientific Advisory Board reviews grant applications, and submits recommendations, for funding researchers whose work shows promise for making scientific breakthroughs or for finding improved treatments for Parkinson’s disease.

    We promise to be a reliable , genuine, and supportive resource for young people with Parkinson’s disease, their family and friends, as well as their healthcare team.

  2. Eddie November 29, 2013 at 11:53 AM #

    Thank you for sharing. I have PD, not as bad as you sons’s yet. People often forget about the sleep issues. I punch walls, people and lamps in my sleep. It sucks

  3. Robert Armentrout November 30, 2013 at 7:15 PM #

    Try to encourage your son to take the PD meds when he can – I was also a young pwp, diagnosed at 38, had symptoms several years before that, and I also had to retire way too soon. I am fortunate that I was vested, and got to keep my insurance, but as for as dyskinesis goes, I’ve been taking some form of carbidopa/levodopa for almost 20 years now, and I don’t have dyskinesis at all. Also, I met my wife in a Parkinsons support group, and she was dx’d the same year as I was, and she has been on meds as long as I have too. While her PD has progressed at a different rate than mine, and she did require DBS surgery, she also has very little dyskinesis. Parkinson’s is a mean disease, and “getting over it” doesn’t happen to anyone I’ve known with it, but life does go on, just at a different pace and direction than what we planned. Good luck to you and your family, please keep looking for support, it is out there, and you will be amazed at how many people are willing to help.

  4. iGranny December 3, 2013 at 4:07 PM #

    Thank you Robert for your encouraging comment. I have forwarded it to our son. He does keep a page on facebook about his Parkinson’s when he feels up to it.. https://www.facebook.com/myjouneypdlilant
    I’m going to keep up posting Tony’s story.


  5. iGranny December 3, 2013 at 4:36 PM #

    Thank you so much for taking time to reply to this post about my son’s YOPD. I will plan on getting more involved with young/parkinson/apda it is so encouraging to know how many people are out there to help. I don’t know if I mentioned in my blog post that my son has a YOPD page on facebook that he post on when he feels up to it. https://www.facebook.com/myjouneypdlilant It means so very much that you’ve reached out.

    Martha Garrett

    PS I am going to try and post at least monthly something on my blog about his journey with YOPD.

  6. iGranny December 3, 2013 at 4:38 PM #

    I’m sorry you have PD Eddie. But it is rather comforting to know that others deal with some of the same issues (esp the holes in the walls) Lets keep in touch. Please note that my son has a FB page about his struggles with YOPD https://www.facebook.com/myjouneypdlilant

    Martha Garrett

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