I have always been self sufficient, able to do my part, stand and argue and fight if necessary at least looking after my own. What happens now? This has hit me like running into a brick wall. Is this what the future holds? How does one change everything? I am serious. What happens now?
I said that I will not just quit but how does one do it when you cant walk. I am not looking for sympathy , I need real answers.
I too have never had to lean on anyone. I will be 64 in January and still carry my own weight most of the time. But i have learned to lean on someone when i need to. You too will learn to lean and to bend to the wind of time. When you can not walk you will learn to ride. These things we face do not happen instantly they happen slowly so we can adjust to them. At the age of 70 i know this not the first time you have faced something that changed your life. You faced what ever it was and got on with living. You will do it now just like you did it then.
Now for a short story.
Last Sunday i was on the way to my sons house. I stopped to get a soda and i heard a horrible crash and i looked up to see sparks fly up into the air. It was dark and that is all i could see. I call 911 and went to see what happened. I was the first one to get there. I found the car upside down with the driver still in the seat. I called out to him and he did not answer. I asked him to move if he could and he moved his shoulder and then he did not move again. I know now he died at that instance. At that moment someone lost a son a father an uncle a husband a brother. Yet these people will live on and lean on each other. That is what makes us human we adjust faster and better than any other animal on the planet.
I do not know what bothered me most , being 70 years old or not walking ,not having wings or perhaps soon getting them. I have never been afraid of my mortality before. For a few years I was superman but I lost that long ago.
No, it was not the birthday . It was the fear of being helpless, useless, a burden . What indignity will be next. Diapers, more of my life centered around me and my health. It is all so unreasonable and non negotiable . There will be better days .
Thank you my friend . I also have been with people at their last breath and watched, two when I spoke loud and I said goodby smiled and I have lost many , some many years ago ,no that does not bother me, He can take me anytime He wants.
Today so far , I have not worn socks or shoes and so far no curling , but it will happen.
I like that new song , better days, better days. I shall see if I can find it.
I try not to think about my mortality....sweep it under a rug and feel better being in denial. My biggest worry like you is being helpless and a burden. I am still in the early stages but occasionally play in my mind how I want my last days to go and who I can trust to help me pull it together. I like your Better Days song so much more than the previous...thanks for posting.
It does get one depressed but I do think I appreciate what I have more now that I know I will lose it a lot sooner than expected. I’ve been reading how Pope John Paul had PD and look at his life. Hell yesterday I almost passed out in a fancy restaurant. But met the kindest waiter ever. We hugged when I left. A negative experience with a positive ending.
Pope John Paul was a very strong willed man and he thought it was a test from God . Thanks for the pep talk . I am going out to hug a waiter right now. Seriously though Thanks for taking the time.
Happy birthdayFriend ! It's my birthday today too and I'm 70 yrs old too! Please know there are options available for Parkinson's patients. Have you considered DBS? It has given many people back a new life! Look into it! Keep the faith! Never give up! Learn to fly!
Hello Cookie, what a day it must have been , you, me and a few hundred thousand others. 23/24 Nov 1947, Maternity wards full and the baby boom had started, and what a ride it was and still is. The mantra has always been keep the faith, never give up , I guess I forgot. Thanks
Deep Brain Surgery, to tell the truth , have I considered it ? NO
😄please please please consider DBS. Look for a hospital that has ASLEEP DBS. This is a life, game changer! U-tube has some good info on it. Keep the flame of HOPE burning. There are still many options available to you!
Yes I did. My worst problems were tremors and rigity. So they concentrated on that. After the first "programing" my tremors were gone completely and no cog wheeling in my arms but my walking and balance were terrible, and I didn't have that before DBS. But I must say that there are different places they can place the probes in your brain according to what your pd symptoms are and for walking and balance there is a specific placement. My neuro said that he feels he can fix the walking and balance symptoms. It just takes some medication adjustment. . After 2 med adjustments , I am quite a bit better,. Not quite there yet but I.m getting there and I have faith that I will get there . I had my DBS on 9/11 /2017 in Boston while at the same time a hurricane was hitting my home in fort Myers, Florida. Never a dull moment around here! I hope this helps
I was 54 when diagnosed but problems walking , being unable to read my own written notes from meetings, tiredness started to be noticeable 3 years before that . My MD who is very knowledgeable and a very good doctor with 35 years experience had not seen PD before . After brain scans etc. he sent me to Neurologist who did not see the PD at first until he saw the last page of my questionnaire.
Retired at 61 , I was still able to lay a paving stone double driveway by myself, and build things like tables etc. Slowly the abilities fade and then at 65 I could no longer trust myself that I could drive an gave that up. The rate of deterioration accelerated and now it seems I can not walk. Now I am taking 2-1/2 Levadopa- Carbadopa 4 times a day , 10 ml Amantadine 2 times a day and Requip (hate it, hate it) 2.5 mg 3 times a day. Alergic to Requip and Statin drugs. Hope that answers your question.
Thank you very much. I'm at the beginning and I was curios about the evolution. It seems that after a while the medication does not work anymore. I hope your doctor finds a better solution for you. I wish you the best.
Oh the medication still works as well as it ever did. If I forget and delay taking a dose I know it very quickly. Almost total paralysis for 30 minutes after I take it.
Thank you for sharing your story Jim. Generally speaking, aging (with pd or not) is a lesson in humility. And it is not an easy one, however the bible says that God loves humble people and hates the arrogant. So, being a believer I count on divine grace and mercy to help me through whatever comes ahead. May you be granted peace in your soul, joy in your heart and the ability to take care of your needs. Will keep you in prayers for that.
I have been working hard my whole life to obtain enough points to get a "Get out of Hell FREE " card, but the statement in the Bible that you refer to is incorrect. God hates no one.
You are right, God hates no one. It was my loose interpretation of "God opposes the proud but gives grace to the humble" as stated in James 4:6. And even when God "opposes the proud", He does it out of love to teach them lessons.
From my own experience - unfortunately I've been quite arrogant during my young years and ironically, later found myself struggling with same (or worse) issues which I was criticizing people for. So, now I am trying not to be as critical and judgmental as I used to be and sometimes still have to work hard on it - keeping in mind my previos lessons
I’m a big supporter of the full anesthesia DBS as performed by Dr Kim Burchiel at OHSU in Portland.OR. Three years ago I was crawling to the bathroom to sit and pee with urinary retention 4-5 times a night. The foot dystonia was extremely disabling. It was less during the day but I had to take 25/100 every 2 hrs.
The day after the electrodes were inserted ended the pm crawling.... the unit was not even on yet. The placement of the leads was therapeutic on its own. I think that you might be better off with a DBS consult ASAP.
GymBag , your posts have always inspired me, and I wish you well. Several here have suggested DBS, it might be worth investing in a consult with a well regarded MDS. I have toe curling on my left foot, and wearing toe separators on that foot while out and about, and yoga toes while relaxing, has helped, and perhaps custom footwear may also improve your mobility. I have also found that the worst of my symptoms seem to come and go. Hopefully you will have better days ahead. Congrats on turning 70, I’m a 1947 boomer and a two time cancer survivor. Turning 70 was a big deal in a good way, PD notwithstanding.
hi gym bag well ill turn 71 in a few days time .a few months ago i went to china for stem cell treatment and it has helped me a lot,it is expensive but im very glad i done it.i even sleep well instead of walking up with aches and pains.i still get a few bits of pain but the stem cells are working.i walk about 6 klm per day and do different exercises for an hour every day.i even have abs at my age.so dont give up hope .i never give up hope.regards your pd friend john.
GymBag, Happy Belated Birthday. Hope you are feeling better today. You've been fighting this disease for many years and I hope you continue to keep up the fight. I know it's tough, but you're an inspiration to many of us. You've always had a good sense of humor and a level head. Seems PD has not affected your common sense/cognitive abilities which is something I struggle with. I know several PwP's that have had DBS and most of them are happy with the results. Take care and keep fighting! Debbie
Thank you for the reply because it gave me a chance to read it all again. Now I am 71, a year has past and life is good. I just got older and older, but some friends did not. They got their wings, so I am learning to fly . ready now . What a wonderful life. I could tell you stories. Did you ever see the movie "The Big Fish" great movie, my life. Coming up to my favorite holiday, another Christmas , so much fun.
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