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My dad was diagnosed with PD about 5 1/2 years ago but has probably shown symptoms for about 10. In the past few months he's had increasing problems with swallowing. He saw a speech therapist who did a swallow test and they found he was aspirating quite a bit of the food he was eating and even mentioned the possibility of a feeding tube. I'm devastated. He will be 65 in February and to me, this sounds like a late-stage problem. If it were 10 years from now, I think I would take the news a little easier but I just can't believe we are already here with this. My question is, are there any options??? Are there any drugs that may help with this and see an improvement or at least a delay in the progression? What about DBT? Does that help this particular problem? He is still fairly active and until this, was coping pretty well. He's never had aspiration pneumonia. I'm just so afraid that losing the ability to eat (and have to rely on a feeding tube) just leaves not much quality of life any more. I'm not sure he will still have much will to live. I have 2 small children and I'm an only child. My husband is very supportive but my mom (parents are still married) is also not well - she has MS - although is in much better health than my dad at this time. I'm just so overwhelmed and sad. Thank you. Kelley |
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((((((((Kelley))))))))) That is a virtual hug for you. You have a lot on your plate and I am sorry that you have to face it all. My husband will be 66 in March and I turned 65 in July, so I understand that you see your Dad as a young Grandfather and Dad. Our daughters do the same. You don't mention his neurologist. Have you discussed your concerns with him/her? I will allow others to help with your questions, but please do not give up hope. I sense that you are overwhelmed as you try to be a good daughter to both ailing parents, a good wife in your marriage, and a good mom to your babies. Try to take a step back, take a deep breath, and take care of your needs, too. Good luck...hugs, Jane |
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Hi Kelly, welcome to the forum. As Jane said take a deep breath, I can't say what drugs would help, I don't know what He's on. But with the medicines available today many times We reach a problem and adjusting medication and or adding/withdrawing can help to get Us back on track for quite awhile. If the speech therapist isn't that familiar with Parkinson's Disease then as in your Dad's case they aren't much help ask his Neurologist to recommend one with experience dealing with Parkinson's Disease. (as with Doctors it is wise to get second opinions so it is with speech therapists too). Many side fields don't know that much about the quirks of P.D. they are learning but behind and catching up. Talk to his Neurologist about his swallowing problems, ask about medicine for it. I don't think DBS helps with that aspect of the disease but I can't say for sure. Did the speech therapist talk to him about posture while eating? Talking small bites? Have a liquid at hand to help with swallowing? Any little hints at all? I'm sure others here will have many tips I've forgotten or neglected to include to help you. Again welcome to the forum you've found a great place to ask questions and get help from some of the most caring and compassionate people around. (They're pretty smart too!) Please keep posting. Take care, best of luck and hang in there |
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Depending on what meds he is already on, he may benefit from amantadine. However,it depends on what meds he is already on. It may also make his voice stronger. If he has a lot of neck dyskinesia, that may contribute to swallowing and aspiration. You should also be aware of something called silent aspiration where no outwards signs of aspiration are seen such as coughing, choking. If he does havea lot of dyskinesia, a slight reduction in med. causing itmay also help. This dosease progression requires constant meds adjustment. Usually, the less is more philosophy is best in my opinion. |
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Thank you all for your kind words and your advice. I'm not exactly sure what meds he is on right now but I will talk to him about possibly needing an adjustment or to add something. He is getting a second opinion from another speech therapist and has already discussed the matter with his internist. He sees his neurologist next week I believe. The internist felt that giving him a feeding tube now was extremely aggressive given the fact that he has not yet had pneumonia so that was a bit more encouraging. He has been doing things like adjusting the consistency of his food and working on positioning of his chin and sitting during eating which has been recommended by a few different sources. My grandmother (his mom) died a week ago so the stress associated with that may also be contributing to his symptoms worsening. I'm hoping that when things get back to normal maybe this will settle down. |
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Thank you jane and Lurking .....we'll I have not surfed either...better day for me and my hubby...he is napping before his Pilates class and I loved the massage, am getting caught up and just needed to vent. Thank you and I hope everyone gets a little time off soon. It makes the world of difference |
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I hope your dad does get better. Stress does cause symptoms to temporarily worsen, so that as a good thought. I wish you the best. |
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Update: The problem has gotten worse in the past few weeks. Now it is not only a swallowing issue but food gets "stuck" in his esophagus in his chest (so far enough down that he doesn't choke) but won't move down to the stomach and causes chest pain until it finally passes (usually after a few hours). He has resorted to vomiting the food up to get it out as well. I made him go to the ER last Saturday and they referred him to a GI specialist to get some tests done, basically to rule out anything that could be causing it aside from PD. Of course, the worst case scenario is that it's just the PD that is causing it which pretty much means there's nothing that can be done. A feeding tube is starting to look more and more likely. I am so angry and sad that he has to go through this. If anyone has any positive stories of swallowing problems that have gotten better either with medication or therapy, I could really use some stories of hope right now. Thank you. Kelley |
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LSVT for voice? Hi Kelley, I've read some about LSVT-Loud - a voice training program for people with PD that is said to improve swallowing. It might be worth finding a speech therapist who can provide this service. My husband had the LSVT training and I believe that it helped his voice and reduced the drooling that is part of PD. In fact, since he stopped doing the exercises, he's recently suggested calling the therapist to come again to re-up his training. For us, Medicare paid the costs, and the therapist came to the house 3 times a week for several weeks to teach him the exercises. Don't know if your PWP is able to engage in this kind of training, but it may be worth investigation. You can find a therapist on their website. VV |
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Thank you Violet V. I haven't heard of that therapy but I will look into it. |
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Well, unfortunately we got a diagnosis even worse than Parkinson's-related Dysphagia. My dad had an endoscopy and it is esophogeal cancer. Apparently giving him the challenge of facing PD wasn't enough of a kick in the balls. God had to give him cancer as well. |
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Kelley, so sorry to hear that. I know it is extremely difficult, sometimes life just sucks. |
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So sorry to hear of your father's cancer diagnosis. I hope he can be kept comfortable and you can make room for this additional heartache while the next steps are taken. |
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Kelley, I am really sorry to hear about your Dad's recent cancer diagnosis. Truly, it must feel like there is no justice in this life. To have pd is bad enough. My heart goes out to you and I really hope you can dig deep and carry on, your Dad really needs your love and support and I know that you can be strong for him. Take care and be kind to yourself.. |
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Kelley, I'm very sorry for all the sufferings and losses your Dad is facing, one after another. The support of your loving family is a blessing to him. |
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Kelley, I understand...hearing, "You have cancer." is devastating. As Al says, when the doctor tells you that, you go into the five stages of grief. Give your Dad some time to digest all of this. Your love and patience are really going to be needed now. Life doesn't seem fair, does it? A dx of PD is bad enough, then this...I wish I could give you both a hug. As a cancer survivor, I know it is not always a death sentence. He will have some trials ahead just to face the cancer. Bless you both in this journey. Come back often to let us know how you both are doing. Conserve your energy and strength. Rely on the oncology team...and ask questions...get answers..Your Dad deserves respect and has the right to know exactly what is going on in the times ahead. I am very sorry you both have so much to face. I hope you find peace and a great deal of love and happiness along the way. Hugs, Jane |
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Oh Kelley, I am so sorry that you and your dad have to face this. Please do come back here for the love and support that are available here. He is lucky to have you. VV |
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Dear Kelley, I can't say how sorry I am for your whole family. I am keeping you all in my prayers. |
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Thanks for all the supportive messages. My dad is at one of the best hospitals in the country and we have a treatment plan. He's going to beat this. I am going to make sure of it. Hugs to all of you and your struggles with PD. Have faith that everything happens for a reason. Kelley |