No not newly diagnosed almost 10 years. I spend the first 2 years in my room in a very deep depression. I have suffered from PTS and deep depression for many, many years, but had just moved to a new area so had to find a new Psychiatrist, I had liked the one I had had so very much, he became sick and died. I have spend iIts hard to go to new doctors and start all over again. The last years still at home, had no friends here, left my friends behind when I moved. Plus the tremors were so bad I didn't like to go out. With in this year I have made two really great friends here, 4 months ago I had back surgery. I live in a two story house and I have 18 stairs up to my bedroom, it makes it difficult to go up and down. My balance is not good and I have been falling plus the cramps in my legs and arms, which are so painful. Then there is the swearing, it is embarrassing if I am out, because it just drips off my neck. Denial was one of the reasons I never went to a support group before. I am doing the best I can every day, I have many hobbies, jewelry making is one and I still do it on my good days . I am having lots of head aches, does anyone else have head aches? I had the melt down after visiting family in another town and I truly believe it is okay to have a melt down once in awhile as long as it only lasts a couple of days.I also pay attention to my hair, make-up and dress as I always have. I am a christian and believe in God and his power. I have had much trauma in my life, from loosing my first born son when he was 3, I was married for 30 years to a man who drank and had affairs, I survived a violent rape at the age of 47, my childhood was not a happy one I had an abusive step father and it goes on, so I have questioned why this too. Oh yes and my second husband who was the love of my life, died after only 3 1/2 years. If it wasn't for bad luck I would have no luck at all. Sorry to go on and on, but I felt defensive and needed to explain where I was coming from.
Precious44
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Precious44
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Why are you feeling defensive? Have you done or said something you shouldn't have,because I do that all the time. Sounds like you have had a rough life and deserve to feel free to express yourself in any form you can and as log as you do not intentionally hurt someone, Get rid if your defensive attitude and learn to be proactive, Surround yourself with
You don't need to feel defensive. None of what happened to you was your fault. It was the actions of others. You also have no control over your PD. We all know that.
Is it possible for you to move the bedroom downstairs or can you move to a different place that is all on one floor so don't have to deal with stairs?
Thank you for your response. I live with my son and his family and one of the reasons they purchased this house was because of the Mother-in-Law room that is down a hall and kind of away from the other bedrooms. Plus I have my own private bathroom, the room is larger than any of the other bedrooms and it's the only one with a private bath, except the Master bedroom and it's upstairs too. They have offered to move me down stairs but the only room down there is 1/2 the size of my room and I'd have to go out of the room to the bathroom, which is really the bathroom by the garage. So, I think for now I'll stay where I am.
Hugs, Hugs, Hugs (I always give hugs because I need them)
hi Precious, i have lead a life full of stress , had a husband with a drink problem but got out in the end. I do believe that it was all the stress that gave me parkinsons.
i too have got to have back surgery and was wandering whethter it made the parkinsons worse after the anasthetic, and how long did it take for you to recover.
I don't know where you live, but I had one of the top ranking spine surgeons. I went to the Northern California Spine Institute, if there is one around you, you might want to check it out before your surgery. I had heard so many horror stories about back surgeries, but I am a success story. Yes, I believe the anesthetic did have a effect on my Parkinson's, but if you have your surgeon, anesthesiologist and your neurologist talk before hand they will come up with a better drug for you. I didn't do that, my fault.The other thing is have your neurologist talk to the hospital about how important it is that you get you meds everyday and on time. Do you have the hospital kit from the Parkinson foundation? I have been very lucky, it only took me about 6 weeks to recover after that I was pretty much pain free. I was to the point I couldn't walk or stand, my back problems had been going on for years. So anything would be an improvement, but I surprised everyone, even after 2 major set backs, this is another thing us Parkies get very easily pneumonia, and I got it while still in the hospital so had to stay an extra 5 days. Then after getting home I got it 2 more times with in the next 2 months. Have been okay now for 2 months.
Hope this helps you and good luck
Hugs,Hugs,Hugs
Precious44
For a start you feel as if you can get it off your chest by telling it to a load of strangers on this site; who are here to listen and hopefully help in some little way. That is positive!
I found a very good way of climbing the stairs, I do it doggy fashion on all fours, my dog thinks it is a wonderful and exciting game. Some people it seems can get a lifetime of bad luck, but I always think the bad things in life are there to try us and make us stronger as people.
I dont believe we get the bad luck all the time, but do believe that bad luck can lead to us becoming negative so that we don't recognise what is the good stuff that comes our way.
At least that is my philosophy. You never know from one day to the next what is round that corner. In many ways it leaves life exciting. I think taking the good and the bad in what ever portion it is dished out to us is something we just have to accept.
We all have enough to eat, somewhere to live, money in our pockets, can have medication for our illness..
To me the people who have nothing at all are the unlucky ones.
In my nursing career I have, believe me, seen people who literally have nothing.
As the that song goes ''count your blessings one by one''. No matter what comes, I can still count so many.
Hi Precious! OMG! As I read your story, I thought I was reading mine! Not everything but enough so that I can relate in a big way! I had a very dysfunctional childhood and we lost our only child in a car accident! There is NOTHING worse than losing a child! The effects it has on you and your health in every way, is profound! I also had back surgery in 2000! They removed two discs and I now have two titanium cages! I was in a cast from under my arms to my hips for 6 months! Between all of my emotional problems and the effects of the anesthesia and other meds I often wonder if some of these things have contributed to the PD? I also am a Christian. As you can tell by my name on here! I was a Chaplain at our local hospital for six years and I absolutely loved it! Because I didn't focus on myself! I focused on others and always was able to find someone that was worse than me! I truly believe that with whatever you have or have gone through, the best way to help yourself is to help others! I had to leave my job, which really was upsetting to me! But I am now facilitating a PD Support Group in our county with another gentlemen with PD! I did that with my daughter's death also! I facilitated a Support Group for parents that had lost children. Reach out to others and give them the best part of you! You are a sweet person with a big heart with a lot to give and share and help someone else in their struggles! Just my opinion, Precious. If you can find a way, give it a try! And when people asked me how I even get out of bed each day with what I have experienced, I always respond with; It is only by the Grace of God, and His promises. And, That I know I will see her again, it's not over! I will pray for you Precious! And that's what you are, is Precious! What a beautiful name! Every morning when I get up and look in my mirror I say: Good Morning Gorgeous! And believe me, I'm not looking or feeling very gorgeous most of the time! But when you do that you are starting your day with a positive! And I say that I choose faith, not fear! Hope this helps you and have a Precious week!
Thank you so very much for sharing with me. I am very grateful for many people and things in my life. The reason I use Precious, is because I never felt I was worth much, because of abusive childhood and marriage. Then I met Ron, the love of my life and he gave me unconditional love and would tell me I was precious. I had 3 1/2 years of pure joy with him and then he dropped dead from a massive heart attach in our garage and I found him. I miss him so very much. I'm really a people person and was going to volunteer at our local hospital..but I am having really bad balance problems and the leg cramps, so I have decided not to do that. At one point in my life I was a sponsor of an Al-A-Kid group for over 5 years. I think you probably know what that is. I was a member of Al-A-Non for 25 years..it and the friends I made, where what gave me the strength to finally leave my husband, the father of my 4 boys. I have wonderful, thoughtful, caring, and loving sons. I live with my eldest, he has provided a place for me to live ever since I got sick and had to stop working. Here in California you can't live on your own with just Social Security as your only income. I do contribute to the household expenses and purchase most of my own food, I have a problem with his wife's cooking, she is Filipino and uses a lot of soy sauce and the like. I have found I really don't have much of an appetite any more. I hope we can communicate more. Have a blessed evening and I will type to you again. Again, thank you
Dear Precious, I felt like you were telling my story too. Married 31 years to an abusive battering womanizing husband and I thought if I changed and he stopped everything would be hunky dory. I finally figured out--what's wrong with me that I stay with him! Hello! So we split up in 1994. I did live in fear he would stalk me but no.
2001 not a good year in NYC, I had thyroid cancer and thyroidectomy. My son died at 36 of mixed drug toxicity in 2002 and almost immediately my PD symptoms appeared. I have practiced Buddhism for 36 years, and faith and my support community carried me when I couldn't take a step. Met a wonderful man in 2004 and we had 4 fun years together before he suddenly died of lymphoma. Miss him, but I know some people don't even get 4 days!
Keep telling your story, it is your greatest treasure! Love, Pat
You are so right on about some people not even getting 4 days. I had 3 1/2 years of pure joy and unconditional love. Ron was such a wonderful man who loved me and he did so not only in word but in deed also. I had a life I had only dreamed of with him. I miss him so very, very much, he was only 59, his 60th Birthday was only 9 days away. I had planned a big surprise party for him, but instead it became his memorial. Thank you so much, Pat for your kind words and for sharing a part of your life with me.
We are preparing now to move and I hate it. Moving from NV to AZ as it stands now but
it might be WI or MD. Point is I know some of how you feel. Reason I want to stay here
is my friends, job, and know the area and have great doctors. Now we have to move. The
house and the wheelchair won't blend and work. I find myself crying when I think of it.
Been in and out of the hospital seeking a reason for the bad pain at the xyphoid. They
found nothing; but, they did see a problem with the gall bladder and took it out. I didn't see the scans so I really do not know what was wrong...I could go on; but I just wanted to share.
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