How do I get help for my son?

Posted by Joanne Eckert @joanneeckert, Mar 15, 2023

My son was diagnosed with Parkinson’s at the age of 42. He is now 48. He and his wife have 5 children. I found out last September that she has been dating. They live 3 hours away from us so it has been difficult to travel back and forth. She wants a divorce so my son gave into her. My husband and I used most of our life savings to purchase him a house just 3 miles from his kids. So now he lives alone except when the kids come by him. His memory is not so good and he’s on a lot of medication..21 pills a day. His doctor said he could still drive if he wants because he’s a grown man and needs to make his own decision. My daughter-in-law takes advantage of this by having him take the kids, even when she’s out with a boyfriend. My son needs someone to come check on him. He doesn’t think he needs this. But whenever I go there, I notice changes. A couple months ago I watched him put something in the microwave and then turn on the gas stove and walk away. I’m so sorry now that we purchased the house, but he would have had no place else to go. Even though the divorce is still not final, he couldn’t live with her anymore. She allowed her boyfriend to send flowers to her while my son was still with her. It was just awful. He will never leave his children and come live with us or his brother and I don’t blame him. I take care of his doctor appointments and we drive up to go with him. I also researched all his meds. I’m ALWAYS researching something. I would like to take him to the Mayo Clinic to be reevaluated but it doesn’t look like they do that. I’m desperate to help my son. Does anyone have any suggestions? Thank you so much for reading.

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What an awful situation. If you can find a PD support group or organization in your area, that would be a good start. Also many hospitals and clinics have social workers on staff who can steer you in the right direction. Lissu

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What a challanging situation for your son. I hope he establiishes a good and trusting patient/DR relationship with his nuerologist, Is he capable of exercise? He may be able to find one specific for Parkinsons and meet others who daily deal with many of the in-common symptoms. Always is good to have individuals who can relate with you. Has he had a recent assesment of his meds? 21 pills a day seems excesive, but if he needs them he needs them. Sometimes we neeed to go back and look at what we are all taking and why. I recently weaned off a pain pill that had clouded my thinking snd reasoning, I didn;t even realise it. My daughter brought my behavior changes to my attention. I hope he can mend from all he is dealing with. AND remember to take care of YOU in all this. Good luck

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I don’t think his neurologist cares very much. My son is just a umber…it’s just a business. With all the pills my son takes (21), which includes Oxicotin , he tells him he can drive since he’s a man making his own decisions. He doesn’t seem to be able to make any decisions, especially about his health. . I hope to get him to the Mayo Clinic for a reevaluation. The doctors he has in CT are the ones his wife picked for him. Sadly, she cannot be trusted so I cannot trust these doctors. Thank you, Deb, for caring. God bless you. I’ve been making a list (first names) of all PD people I meet along this journey because I BELIEVE GOD HAS A HEALING WITH YOUR NAME ON IT !!! ✝️💖🙏🏼✡️.
I will be praying for you every day!

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@lissu

What an awful situation. If you can find a PD support group or organization in your area, that would be a good start. Also many hospitals and clinics have social workers on staff who can steer you in the right direction. Lissu

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Thank you for replying. There are no local hospitals but I don’t mind driving to Long Island if I have to. I’m in Queens, NY on an island in Jamaica Bay. Can I add you or a loved one to my prayer list of PD patients?

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One of the greatest helps for my mother was having her put on anti anxiety drug . Anxiety Disorder is a precursor for many to PD. She was beyond difficult to handle before she was put on them at my request. Then I dealt with someone rational . By the time she passed 10 yrs later everyone’s kids on her unit asked for the same meds as my mom was the only one remotely happy and pleasant . I went on Effexor for GAD 25 yrs ago and some of my cousins show PD tremors and some have died……I have no tremors at all. There are many white papers about no gene found for PD but yes to gene found for GAD. That it’s an electrical short. I’d study up on that and make sure his doctors are easing his anxiety impacting PD with appropriate meds. Pay attention to signs like pilling of fingers….one of the PD ‘tells’……..

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Thank you for your response. I just began taking Effexor last year. It has helped me with all the stress I’m dealing with. I wasn’t doing too bad until my son’s wife decided to divorce him. She said she wants to be happy. She sickens me terribly. When my husband asked about their wedding vows, “for better or worse, in sickness & in health,” she said, “Some man made that up.” The worst thing for us is being 3 hours away from our son and now he lives alone. He takes 17 pills a day, which includes 2 Nortriptyline capsules for depression. He also takes one Trazadone at night which is an antidepressant and sedative. I believe he’s on far too much medication. I also found out that he never told his neurologist about his personal life situation because his wife was making sure she went to the appointments with him. Now, my husband and I travel to take him, and we’ve told him we do not want her present. Sadly, he’s having a difficult time letting go of his famiky life as it was. They have 5 children. The divorce isn’t even final yet and she’s been dating for about 2 years. I can’t even give details because it’s totally beyond comprehension that she’s doing this to him. He’s such a great husband & dad. I hope to have him reevaluated at the Mayo Clinic as soon as we tie up some loose ends here at home. I will definitely look into an anti-anxiety medication for him since it’s not the same as an antidepressant. Perhaps something like Ativan would help him. However, my biggest push is for him to see a Naturopath doctor and a chiropractor. Thanks for your input. It helps. I’m very sorry about your Mom. It must have been so difficult for you. You’re a good daughter. God bless you.

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@dkmielke54

What a challanging situation for your son. I hope he establiishes a good and trusting patient/DR relationship with his nuerologist, Is he capable of exercise? He may be able to find one specific for Parkinsons and meet others who daily deal with many of the in-common symptoms. Always is good to have individuals who can relate with you. Has he had a recent assesment of his meds? 21 pills a day seems excesive, but if he needs them he needs them. Sometimes we neeed to go back and look at what we are all taking and why. I recently weaned off a pain pill that had clouded my thinking snd reasoning, I didn;t even realise it. My daughter brought my behavior changes to my attention. I hope he can mend from all he is dealing with. AND remember to take care of YOU in all this. Good luck

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Deb, I can’t take care of him or myself. He often acted like someone very different. His wife has turned him against us and where we jive. In any event, we give her to the Lord so HE will soften her heart. Thank you for your kind advice.

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@lissu

What an awful situation. If you can find a PD support group or organization in your area, that would be a good start. Also many hospitals and clinics have social workers on staff who can steer you in the right direction. Lissu

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I’m still looking. Thank you so much for responding to me. Joanne

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I was diagnosed with Young Onset Parkinsons Disease at the age of 48. I am now 60. Two years ago I decided to see neurology at the Mayo Clinic Rochester. I had to wait about 2 months to get in but it was well worth it. I see Dr. Savica. He leads the Young Onset Parkinsons Clinic at Mayo. He is wonderful, very approachable, very caring. If you go to youtube and search for his name you will find numerous presentations he is a part of. I also keep abreast of the Davis Phinney Foundation. They are a wonderful group. Best of luck.

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@21amy

I was diagnosed with Young Onset Parkinsons Disease at the age of 48. I am now 60. Two years ago I decided to see neurology at the Mayo Clinic Rochester. I had to wait about 2 months to get in but it was well worth it. I see Dr. Savica. He leads the Young Onset Parkinsons Clinic at Mayo. He is wonderful, very approachable, very caring. If you go to youtube and search for his name you will find numerous presentations he is a part of. I also keep abreast of the Davis Phinney Foundation. They are a wonderful group. Best of luck.

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Thank you so much. I hope you’re doing extremely well. God bless you, Joanne

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