Helping Those Who Care for Parkinson's Patients
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My father was recently diagnosed about a month ago. He is 53, which to me is young but I guess not. I went with my father to his Neurologist appointment and was there when he confirmed my suspicions. PARKINSONS DISEASE. I held it together until we left the office, then I broke down in front of my dad. You see I have experience in the medical field as an OT and know all about the 5 stages and the progression. My poor dad didn't know how to handle me, he just held me. My god all I wanted to do was be strong for him, but I couldn't. I tried so hard, but the tears just kept coming, and they still do. Right now all I can tell that's going on with him is his resting hand tremor in his righ hand. It's scary because in a course of 1 year the progression has gone from his fingers up his forearm and he is already feeling twitching in his bicep. He tried taking that Requip, but only for two days and he said he wasn't going to take it anymore because it made him feel drunk. My dad, a stubborn Hispanic man, refused to take the med any longer even with my encouraging and explaining that it takes a few weeks to get the med in your system to where the side effects are not so bad. He keeps saying, aw pumpkin I've lived a long life and I'm fine with everything. But I'm falling apart here! I want my dad to be able to see my future children grow up! I need him, we all need him. It's so sad because I know what its going to take before he will take any medication. The tremor and this disease will have to affect his daily functioning before he does anything. I don't want it to get to that point, I know and realize it will but he can at least be pro active. I tried explaining to him it would be like if I had cancer, he would want me to get chemo right? Well he said of course...same thing he needs to be doing something about it. I go through bouts where I get depressed just thinking about it. I almost just go numb. Something I've never experienced before. Then I try not to think about it so it won't hurt so much. And it's that much easier because my dad lives in a different town and I dont get to see him all the time. But this past weekend I went home, and the tremor is bad as ever. Bless his heart, I know he has to be embarrassed by it. And then while he was making breakfast for my brothers and I (all grown adults but breakfast has always been dad's specialty) my dad started dropping things by accident. Tears welled up, but I held it together. My poor dad, how much longer is he going to be able to work? Do my husband and I need to start trying to have a family now because my dad is going to get worse and worse? So many wandering questions. Then I find myself noticing other men my dads age, like someone I see at a the grocery store that looks like him, and I wonder and ask god....why are they healthy and my dad has this tremor....this disease that is going to take away his quality of life? Sorry I am using this forum to vent, I appreciate all comments and support. God bless |
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4mydee, Welcome and please don't apologize for venting, it's one of the uses of the forum! Give you're father some time to adjust to the dx. As He adjusts to life with P.D. He'll probably take another try on the med's. This is all new to Him and He'll find His way. As for You, you're probably in the minority here, being an OT you have some knowledge of the effects (prolonged) of P.D. to start with. You must try to remember that the people you work or worked with who have P.D. didn't get to those stages overnight, rather overtime. Try to not look or dwell on the future course of the disease. I know this is easier said then done! But you must try, if you find you can't and there will be times you can't, maybe if you make a mental note of a couple things you can improve around His home to aid him or make something easier for him.......You say He's stubborn, so don't try to change a lot just sneak in a thing or two over time so He won't feel you're trying to take over or force changes on Him. This may work. Finally, your talking about His refusal to take His med's reminded me of a television show several years ago about Mohamed Ali, His daughters were talking about His refusal to take His med's, they pleaded, scolded and still he was refusing. Asked how they got Him to take them they replied, on mornings when He refuses we just smile and place them by him and cheerfully say "It's up to you Daddy, here is your medicine, if you want to move today you'll have to take them. If you don't want to move then leave them there. Most of the time He takes them." I guess We Parkinson's patents are all stubborn, just the degree's of stubbornness vary. Keep posting, take care, best of luck and hang in there. |
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Welcome to our forum. We will be with you throughout this experience if you elect to stay with us. You are experiencing that initial shock that goes with the diagnosis of PD. It is natural. At this point I wouldn't make any life changing decisions but would wait until this initial period is over and also until you can see how your dad does. PD is very specific for each individual and I personally know two people who have had the disease for longer than twenty years. They are still relatively independent. You just can't make any genralizations about the disease. Being an OT I imagine you have seen the very worst of the disease and often people in the advanced stages. Many continue to work and stay active for many years. My husband worked as a physician for 14 of the 17 years he was diagnosed. Try not to be alarmed at some of the posts you read on this forum. Many of us are dealing with loved ones who have advanced disease and dementia. Not every PD pt gets dementia. We are also fortunate to have three PD pts who contribute to the forum and they can help you with what your father is feeling at this point. They keep the rest of us on track when we go off on a tangent. I would imagine that your dad is also going through a period of shock and it will take some time for him to take it all in. Give him some time on the meds - right now he wants to be a strong person in control of his life and taking these meds makes him concede that he has PD. There is a great deal of research going on right now. The stem therapy, deep brain stimulation and better meds to name a few. It will be a glorious day when we finally have a cure. Stay with us. |
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Hi 4mydee and welcome to the forum. Please don't apologize for venting. That's part of the function of this forum. It's true that everyone who gets Parkinson's gets it differently. Your dad is young and he can still lead a healthy active life for a long time. I too know someone who is in their 70's and has had it for over 20 years and paints and takes walks everyday. Parkinson's does take a long time to progress so there is plenty of time to make life changes and plan. Try not to bite off too much at once. I know that is easier said than done. My mom also refused meds for awhile. It was her choice and I didn't interfere. She was in denial for about a year. I have been by my mom's side thoughout her journey with PD and we have grown much closer than I ever thought we could. We both put a lot of emotional baggage aside and I'm not sure we could have reached that point if she was healthier. Life can be strange in that the lessons come where we least expect them. This forum is a good place to get info, vent etc... I know I'd be less informed and a little nutty(er) without it!! |
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I teared up reading your post, how well I remember, as we all do, that doctor visit where the dx was made. In an instant your life is forever changed. It's like being shot. Stay with us, this forum is the best support you will find. I had someone tell me the other day how surprised she was at how well I seemed to be doing ("seemed" being the operative word there), and while we are early in the course of this damn disease (and what a HUGE difference that makes), I attribute it to this forum. What a wellspring of support and comfort when you need it the most and from those who have been there. You will cry more than you thought humanly possible, and when you stop, dammit, you will cry again. If you are like me, you will cry anytime, anywhere, and you never know what will set you off. I recommend getting a pair of dark sunglasses because they will be your best friend while you work your way through the shock of the news and what it means to you and your family. Heck, I still use mine all the time because nearly three years after dx, the tears still show up, unannounced and unwelcome as ever, and I don't want our kids to see. I would also read as much as possible about PD but keep in mind everyone is different. The main thing is, just love your dad and be there for him, like the wonderful daughter you are. Good luck. |
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I will echo everyone's message to hang in there and allow time for your dad to adjust to his diagnosis. My husband has had Parkinson's for about 2 1/2 years. (that we know of). For the first summer after his diagnosis, I think he was depressed and in denial, and would get frustrated if I even wanted to discuss it. About 6-8 months later, he was finally ready to do some of his own reading up on the disease, and about 12-14 months after diagnosis, was ready to start taking medicine, although that scared him to death because he'd read about side effects. Before he finally decided to take meds, his hand tremor was constant, and his balance was tricky. Even then he would swear that he didn't notice that he was falling backwards, even though he had learned to position himself near large objects that he could lean on quickly! It is hard to take a deep breath and let your loved one deal with some issues on their own, when you want them to take action! We understand. You have fears racing through your own mind, and since you can't really DO ANYTHING to make the diagnosis go away, your thoughts won't let you rest. We understand that too. I went through many sleepless nights for those same reasons. It will take time for you to adjust and find some calm thoughts, just as it will take your dad some time to wrap his mind around everything. Stay with us, there are many here to lean on. |
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HI Please tell your Dad our Dr. told us it takes 3 months for the drug to properly enter his system ! My husband was only 41 at diagnosis, he's almost 57 now & is in late stage 3 ... Jims Wife |
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| 4mydee, hi, welcome to this wonderful forum. Use it often to vent and to obtain information and to help others. I look forward to viewing it daily. Yes, the diagnosis is quiet a shock but you have to take a deep breath and go at it a day at a day, remembering it is what it is. I take care of my Dad and when he was first diagnosed, I researched the disease and read everything I could on it - I still do. "No two are the same" is something I hear a lot. So, please hang in there and, again, take it a day at a time or you will feel too overwhelmed. God bless, Mary |