i feel that it is so unfair to my husband to have to care for me any longer. this has taken not only my life but his as well.
the sicker i become the more he has to stay home and care for me. he used to be able to ride his bike, go for walks, paint (he is a great artist) these are just a few. THIS IS SUCH A HORRIBLE WAY TO LIVE. we are both very depressed now....... i feel the only right thing to do is to end my life so that he will be free.....
please don't tell me about ''for better or worse''' etc...................
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czimmerman
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5 years. i have been to several doctors. they all say i hav to figure the dose out for myself. i take 1 1/2 sinemet every 3-4 hours. they do help. but this will never end.
I have felt this way for years but i have kept fighting. It has been a long 12 years. I was bad for the first 8 years but i am better now than 4 years ago. At 8 years i could hardly feed myself , only could walk maybe a 100 yards. Today i can run 2 miles dead lift 400 pounds. I am 64 and my wife is 63. I have improved by the use of meds and exercise. Please talk to your husband most loving partners feel pride in supporting there partner and it gives them purpose in life. Ending your life will do no one any good. Talk to your doctor get new meds. Don't let this thing get you. Post again.
Great advice Bailey_texas. Also in the mean time is there any way you can arrange things so he has some more time off to do some of those things again? It would make you both happier. Do you have any friends, family or care options that could make that possible? Even a short break could help take the pressure off while you look for solutions.
Improvement is possible. High dose thiamine, 2 grams 2x/day. Dr. Costantini has brought 150 PD patients into remission. I have already gotten some improvement.
Try taking Thiamine like RoyProp & park-bear. Exercise walk like John Pepper suggests or Crossfit like Bailey does or do Rock Steady Boxing (RSB) like I do (RSB is strictly for PwP's just like you that have symptoms & fears like you & they help each other cope). Your husband can exercise with you or be with other caregivers or go on his own for a couple of hours. But don't give up! Keep fighting! Here is the RSB website: rocksteadyboxing.org. Read some of the testimonials (I have one-Debbie) and watch some of the videos and see if there's one close to you. If you can't afford it, talk to the head coach and they will work something out. There are people that donate money so others don't have to worry about the cost. Keep us informed & don't give up.
Since you said only that you were taking Sinemet, does that mean it is your only therapy? If so, why not try to exercise as much as you're able, along with a few other recommendations here and see how you feel after 90 days? It may be within your power to change the situation. If your husband will join you, it will make him feel better, too.
You are need and loved. I know this because i love you and i need you to write another post here so i can know that you are doing better. You do not say what stage of Parkinson's you are at and i know 5 years is a long time to deal with Parkinson's. But you are not alone so lean on the people around you' You are not weak if you ask for help. By writing here you have all asked for help.
If i had done away with myself 7 years ago i would not have found this site and told my story. I believe i have affected at lease 1 person's life by being here and i hope it is a lot more than that. I would not be writing this in hopes of helping you.You have given me purpose. Also there would be maybe 3 people that would have lost their life if i was not here. I stopped to help 2 good Samaritans that were helping a man who had been hit by a car. It was still dark that morning and i had my reflective vest on. They were on their knees in the middle of the road and i was standing next to them. We were about 50 feet from the intersection and i heard the sound of a full size v8 chevy pickup acceleration at full throttle and then saw it and he saw my vest and slammed on his brakes stopping inches from me. We would of most likrlyhave been killed. He told me all he saw was my vest and that is why he stopped.
If i was to guess what % of people that have Parkinson's that has had the thought that everyone would be better off if they where dead i would be correct by say 100 %. That of course would include me and i have said a lot lately. But i have been wrong every time.
We are better off with you in this world because you wrote this post. You have remineded us that we are not alone and that there are people who need us and we can do something positive in their life regardless of what this thing we call life throws at us.
There are so many caregivers who have lost their partner posting on this site, about how much they miss that person, and what they wouldn't give to have more time together.
Many thanks to LostinHeadSpace. I am one of those--a wife of a PwP who recently died. I miss him more than I can say. He was my best friend. I would never have deserted him and would have been distraught if he had deserted me intentionally. So hang in there, czimmerman. Your life is worth so much to so many people -- to more than you can imagine. With much love.
Get yourself a wad of writing paper and start writing the names of people your life affects. Family, friends, previous work mates, people at your school, college, etc. Even the person at the store who serves you your groceries, newspaper, loaf of bread. The postman.
Your doctors, physios .Even the chiropractor that does your bunions.
Anyone and everyone.
By the time you have finished the list, months ,years you'll probably be over this minor, temporary depression.
Ok you lot out there!!!!. smile ,hands outstretched, one ginormous hug from all round the world to czimmerman
cz.i have an idea what your going through, as a lot of people have bad thoughts im one of them thats why i went to china for stem cell treatment..it helped me not cured me well,im 71 i have had pd for over 5 years now.im getting by with what im taking. and a lot of it i get from people on this site,but you must exercise at least 4 times a week, i do it 7 days a week.ok ill tell you one thing if i was you i would give up on sinemet as on this site you hear alot of people complaining about sinemet.me as well it made bad. i now take madopar,,i will give you a list of what im taking every day as im doing ok now ok here goes..i take 1 madopar 3 times a day 200/50 mg....in between you can take 1 madopar 100/25 inbetween the times when you take the full strength madopar...1neupro patch.a day..thats all the dopamine stuff..then i take 1 mannitol tablet 3 times a day 40mg..then 1 thiamine tablet thatsjust another name for vitamin b1 same.. 1, 100mg tablets 3 times a day..this tablet i take is a pain killer..tramedo 1 tablet twice a day.but all must be done with exercise..try 7 days a week..u can start going for walks then sit ups well go into utube theres lots of exercising there.ok hope this helped..dont give hope.regards john..
"you are handed a bumpy road, not a death sentence. Fight for your bucket list. Don't allow this disease to steal things. Your attitude and your activity determines your path. "
This quote is from a professor at Ohio State University who has PD. He participates in Delay the Disease. See if there’s a class near you or a Trainer Certified in it. Alternatively you can purchase their DVD online.
Exercise is proven to Delay or even reverse symptoms. Finding a Parkinson’s exercise class can give you confidence and support.
I am Certified in Delay the Disease and have worked with PWPs for 5 years. You absolutely can take back control from this disease
Also - your local Parkinson’s Foundation will likely have grants available for caregiver support and exercise if you can’t afford it.
I,too wondered about the burden I have become.my symptoms are not too bad as I constantly change my life around. BUT I will not let this bxxxxxx beat or define me. Tough, you bet. Returning from a dentist Monday, we were hit by a 18 wheeler broad side and pushed sideways for 168 ft. After that and without a scratch, found reverence to each other we wil never separate. This just happened 5 days ago. FIGHT,FIGHT,FIGHT. Don't wait until a semi hits to count your blessings, they are many, love you
Your post reminded me of an interesting post by the late John Schappi who wrote a good blog on PD called Aging, Parkinson's and Me. You can still read the blog and it is very informative and interesting. Here is a post he made on suicide:
I think there was another one that included a New Yorker article about it.
Try to stay calm and carry on. Try to do as much for yourself as possible. Probably you should go ahead and learn about suicide--it might help you get it out of your mind so you can forget about it.
I don't know if this will help you, I does help me. I still have tremors, but no more stiffness, pain or balance problems at this time. Also I don't take as much meds. I am gluten free, mostly eat raw veg and fruit. Mostly root veg, such as sweet potatoes, carrot juice and ect. This is not easy to stick too. I do eat meat, fish, eggs and cheese once in awhile as long as it is gluten free, also you may have some of your veg cooked or steamed, just make sure you eat raw as well. I have gone off this diet a few times and paid the price and it is hard to get back on, the holidays are the worst for me anyway. It is not a cure but it has made life a easier. It don't work for everyone, but it is natural and worth the try. Please talk to your doctor about your depression. As long as you are depressed, it will make your PD feel worse. Hope this helps you. For me I noticed a difference in a week, not as much pain or stiffness
Exercise is good for PD, but it is also excellent for depression. Double bonus! I tell my husband that I’m going to the drug store (gym!!) to get my happy endorphins. I exercised for years before diagnoses simply because it made a major difference in my outlook. It all starts with baby steps...you don’t typically begin working out 7 days a week...that is too overwhelming for this girl! I began with putting on my shoes, then walking out the door, then down the driveway, etc. and build a habit and set a goal to do more every session. Eventually, you have a healthy addiction to those happy endorphins! Maybe your husband or a friend would like to join you? I’m sorry you feel the way you are feeling. I pray you have a change of heart. You are loved!
My husband felt the same way. He is now seeing a therapist and it has helped him immensely. He was also put on an antidepressant, he didn't want to take it, but it has helped too. I don't want him to check out on life and I'm sure your husband doesn't want you to either. It is a crappy diagnosis but we get by day by day. He has good days and bad days but so does everyone else. If you are not seeing a therapist I would highly recommend you look into it, it gives you someone to vent to if nothing else. I also struggled with depression after his diagnosis and kept asking why this was happening to us. The thing is, no one knows what life is going to through at you, you just go with it and make the best of it. I wish I could help more, it breaks my heart that you are feeling this way. You are loved and needed, your husband married you because he loves you. I always tell myself that things happen for a reason, we may not know what it is at the time but somehow it will work out. There are too many things in life you'll miss and he'll miss without you. Exercise together also, that has helped me to feel better and stronger to help him. Please hang in there and talk to us or someone when you are feeling low. I'll be praying for you.
My husband has the PD, he started Mucuna about 10 days ago. He takes it as needed , up to 8TBS a day. He s also on Sinemet. He feels better and told me he no longer feels like crying and so desperate...It calms him and seems to have no side effects. I bought Mucuna Puriens Extract powder from Bulk Supplements on Amazon. It is natural dopamine. We have gone through what you and your husband are. He is 78, i am 76.He has had PD about 7 years now.
I have been dealing with PD for 5 years as well and I understand having some bad days and I am so sorry you are feeling the way you are , but everyone is right you are loved and we understand what you are feeling . There are other options as far as medication , exercise , cbd , massage ect . I take cd/ ld 2 every 6 hours and an azilect in the morning and add Comtan during the day . I also do cbd sprays and every 3 months I get Botox in my leg that has bad dystonia . I continue to do ultra running and work full time . Exercise makes me feel so much better . Please know that you are important and valued.
Thanks to all of you for the many supportive replys. It gives mee encouragement. I cannot reply anymore because it is extrememly hard for me to type. I have learned a lot of things to do to help myself more, especially exercise more. THANK YOU ALL.
When You sent me the website to the parkinson's recovery project. did you konw i live in santa cruz thank you so much. i live within 1/2 mile of 5 branches.
Is. there any chance you are Canadian? If you are you can access respite care for your husband so he can take care of his health and well being. Sounds like you are both tired. I can't imagine how tough it is, I hope you reach out and ask for help from your family and friends. My mother never did until it was too late. I had no idea how bad it was and I would have gladly helped had I known.
Hi there , I was back on checking on you , I’m glad that you are seeing some positive alternatives out there. I’m going to check out the Parkinson’s recovery project that you are talking about but I am in Sacramento , not sure if there’s anything near me. Keep your chin up we are all in this together .
I was diagnosed 3 years ago and have felt the same way about burdening my husband. He, however, laughs and says he's been caring for me the last 40 years, so what's another 30 or 40!
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Maybe your husband or a friend would like to join you? I’m sorry you feel the way you are feeling. I pray you have a change of heart. You are loved!
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