My Major Problem - Too Soon To Die

PortMac
I can understand what you are saying. I am 66YO and with meds I have virtually no PD symptoms. My dad had a masssive stroke at 56YO that left him unable to speak and with no right hand or leg coordination. He drove race cars in the 20's, 30's and 40's. Had an auto repair business. Then he had the stroke and everything stopped completely. He never worked another day in his life and could not even drive a car. He lived another 23 years. It had to be he** for him. I saw it and vow I will never let my life be like that. My suggestion is what I plan to do when the PD is worse. Write yourself a letter. Tell yourself just what you said...."on a good day I realise how stupid that thought was". Tell yourself how things are on a good day. Then on a bad day read your letter. It might make things look better.....maybe not.

Dan

Port Mac,

I do not have PD, but I have something called Pelvic Adhesive Disease from having what turned out to be two unneeded pelvic surgeries at 2 separate times in my life. Only part of a second surgery was needed result of the first surgery. Second surgery involved a serious misdiagnosis of what needed to be done, procedures done beyond consent, no follow up to complications. In essence my small and large intestines scarred shut from severe internal scarring.

It took me 13 months seeing 11 surgeons at 7 major medical centers across the US. All the time being unable to defecate due to large bowel scarring and unable to eat due to small bowel scarring. Two times I mentioned wondering if I should just end it and got tossed into a psych ward after saying it once at one hospital, and "sentenced" to psych eval after saying it the second time to my PCP in my home town. TRUST me DO NOT voice this thought to any psych or medical person as they will take inappropriate action to cover their own butts!

What you need it the appropriate MEDICAL help. I found mine at a place that is on the cutting edge of technology and medicine but is a well-kept secret very little publicized. If you can, get yourself to the Lahey Clinic in Burlington, MA. They did what COULD humanly be done to save me and now I am going on world cruises, able to eat, gain nutrients, and pass waste, though not in the conventional manner, but still, I'm alive and for now feeling as well as I can. I do still have potential for possible future sequela, but maybe not, so I'm seizing the days! I'm now only 54 and would be in excellent shape other than having gone down the road I did, but I'm alive and functioning and enjoying life more than most people having looked death square in the eye.)

Through a friend of mine whose brother has PD and is being treated there, they do have some new PD drugs that are very effective and more are being researched there all the time. Google Lahey Clinic Medical Center and you will find their tel. number. Trust me, do not give up until you get seen by this place. Other major medical centers were just going to let me die. THis place saved me. Take my advice.

Been there, Rosemary

I have never been at the place that you are but I can tell you that there are times when I wonder how much of my problem is pd and how much is related to posssible other causes. I can be fine for a month or two and then everything seems to fall apart- like now - my feet and legs are swelling and some days it is very hard to walk and keep my balance...but by the same token, I can bend over and not get dizzy at all and have no fear of falling.
I am currently seeing a psychologist and she is great or me. She has pointed out that when my stress level gets so high that that is when it seems the worst..so I try each day to look at others that are much worse than I am and that helps a lot. You just have to keep as positive attitude as you possibly can whuch is not very easy to do. It is very difficult to explain to your doctor just what you are feeling because they themself have never experienced it - they just see a multiple of patients and try to sort it out. we are all different and react different to everything.
I hope you feel better soon. Keep in touch Smity

Are you seeing a movement disorder specialist or a general neurologist? Movement disorder specislists specialize in PD. They are above general neurologists regarding PD.

Dan

Port Mac,I can understand completely what you are talking about,my mother is in the end stages and I can see myself doing some of the same things she has done when first diag. and it scares the crap out of me..No one seems to understand. I have also reached a decision that I will not live like that I have discussed my options with my husb. I want to die with some dignity and not put my family through all of the things I have gone thr. with my mother I am here if you need someone to talk to who understands...

Cheerbabe
I don't remember seeing you post before. Tell us about your dad. How old is he, when was he diagnosed, what does he take, etc.

Dan

Cheerbabe
9 years is a long time on L-dopa (sinemet). Do you know if his neurologist is a movement disorder specialist? All neurologists are not movement disorder specialists. They specialize in diseases like PD.
It makes a difference. Find out. Let us know.

Dan

Cheerbabe
Do you mean deep brain surgery?

Dan

That is the only PD surgery that I know of.

Dan

I'm new on here and a little bit confused when people talk about "dying from Parkinson's". My understanding of the disease is that it is not a terminal disease. My Dad has had Parkinson's for 17 years now and for the first time ever a neurologist told my sister and I that he is "end stage Parkinson's". I assumed based on my understanding that Parkinson's is not a fatal disease, that he meant that there is no medicine or procedure that will continue to be effective in relieving the symptoms of PD. For example, he has been on Sinemet (Carbidopa/Levodopa) for the entire time and it seems to have completely destroyed his body's ability to produce it's own dopamine. I asked the neurologist what the disease will eventually look like in my Dad when no medicine will work at all and he said he will basically not be able to move. This is how I remember my great-grandfather, who unlike my father, had late-onset Parkinson's. He simply just sat motionless in his chair and stared blankly into space. This was in the early 70's before Sinemet was widely used and I imagine he may not have been taking any medications. Even so, I do not believe my great-grandfather died from Parkinson's. I believe he died from congestive heart failure. When people in this forum say "die from Parkinson's", do they actually mean die from the physical disease process of Parkinson's or do they mean from complications caused by the disease?

fooshoho,Technically speaking any disease may be terminal.Jack Daniels of whiskey fame died from complications brought on by a broken toe.Most pd er's do not die from parkinson's disease.Many simply die of old age with it.Everyone with this disease shows different symptoms,and different responses to it.Some sail thru life with little complications other don't.
All of us will age,and eventuually die.All we can change is our own attitude on life,and how we cope.I've been fighting this disease for at least 13 years,and have gone from 53 to 66.Age itself is slowing me down,but I'll carry on as long as I can fishing and visiting the grands.Life changes for all of us a new adventure is around every corner,and i will fight this disease till I die of natural causes.
I wish you all the best,and don't throw away your dancing shoes.Ed

hi everyone, my mom diagnized by PD like a year ago. as i read from the forum the first year of the diease can be a reference of how it may be in the future stages and the length of the stages. last few weeks sshe started to talk too much in her sleep (even hits) and today she found it very hard to keep her pee til the loo and wet herself a bit. i cant tell her mood symtomps as she has always been an unhappy person (ironic that my father has been telling her for ages that she might have lack of dopamin,wise man.) her shaking seems to be there only when she is stressed or upset. and she is on azilect. i really dont know if she is having slow progress or fast. she is 63 now.
i feel terrible, i just moved to uk 1.5 years ago (she lives in turkey) and she got diagnized 5months later, until now i didnt realize how serious effects and this period could be for her, so i am considering leaving my life in the uk behind and moving back home.