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Topic I have not been here in a- while Go to previous topic Go to next topic Go to higher level

By sube56 On 2010.06.21 20:00
I have not been to your site in a very long time, When I first started here I found much help and relief,but along with that came fear. I was learning to much.I also wrote to someone who had lost her husband,I ended that post with lol, I thought it ment lots of love,needless to say, I was so sorry and still am. I now know the difference.I pray for forgiveness from all.
Boy did i think that I had a handle on everything,Now hear I am angry, hurt,and really need to come back...if you will have me,sube

By parkinit On 2010.06.21 20:08
Your post reminds me of a time when I was attempting to communicate in Spanish. I saw a picture of the lady I was talking to on the wall in her wedding dress. I wanted to tell her that her wedding dress was "grand". I meant to say, "Your wedding dress is "grandioso." What I said was "Your wedding dress is grande" (meaning large). I didn't realize what I said until I was rehashing our conversation on the way home and I was mortified. I quickly called and told her I was sorry and it was my inadequacy with her language that caused me to say the WRONG thing. To make a long story short (if that is possible at this point), she forgave me; life goes on.

I'm not the person you spoke to, but in light of your error, I can certainly understand how this may have happened. We all need one another's support.

By RhondaM On 2010.06.21 20:50
Welcome back. I hope you get the support and help that you need.

By lurkingforacure On 2010.06.21 21:33
sube56, of course you are welcome, and we are glad to have you. I am curious, because you mentioned you "thought you had a handle" on things, but now are back, did you not have the handle you thought...in other words, what happened? I don't mean to pry at all, if it's too personal, please forgive me, but I wonder because some days I too feel that way, like I can handle come what may, but yet I don't want to get hit blindsided...I have tried to educate myself as much as I can, but yes, sometimes too much information is, well, just too much. Imagining my life, my husband's life, and that of our two young kids watching their father falter with this disease (some of the things I have read about, one naked and screaming dad chasing his teenage daughter down the street, etc.) is really not something I can fathom, much less really prepare for.

So I guess I am really asking, was there some catalyst that caused you to come back and if so, what? Anything you can offer to help us coming along this journey behind you would be very helpful, and again, no intention to pry into anything too personal. Just thought I'd ask. Who knows where I'll be a few more years down the road, mentally. Thanks.

By Reflection On 2010.06.21 21:53
So glad that you have come back, if you have found (as I have) this forum helps your path. I go in phases - research madly, trying to understand what's happening, what's to come - then back off for awhile. A warm welcome, and I hope you find help here.

By LOHENGR1N On 2010.06.21 23:46
sube56, Welcome back. We all make blunders with the abbreviated short hand online. No harm meant, no foul. The nature of this beast Parkinson's Disease is that just when you think you've got an idea of what's going on it changes! Many on the forum, myself included refer to it as family! Like families there are misunderstandings, spats, feelings unintentionally bruised, People move, loved ones lost. And like family we understand circumstances change. As a large family we know these things and we welcome our members in, new or those pulled away for whatever reason. So pour yourself a tea, coffee or stiff one and unwind, decompress and lay your burden down for a bit. We're still here for you however we can help my friend. Again welcome back, good to see you! Post away we'll try to make sense of it all. Take care, best of luck and hang in there.

By Lotsapies On 2010.06.22 01:15
Sube I'm pretty new here but I'm glad you posted again-

These online abreviations are sometimes hard to get used. In fact, sometimes I wish we had an area on this site for the frequently used acronyms. I don't know how long it has taken me to figure out that "FIL" means "father-in-law".

Take care and welcome back.

By Emma On 2010.06.22 06:09
We are glad to have you back. Your past "blunder" was just that, a blunder. We all make them, don't beat yourself up about it. I often have to ask my teenage nieces and nephews what some of these abbreviations mean.

It sounds like things may be getting worse for you and you need some support. We're here for you and will offer any help we can. Welcome back to the fold.

By karolinakitty On 2010.06.22 07:02
Lotsapies ....

Here is an online reference to almost all the abbreviations for texting and chat rooms:

http://www.webopedia.com/quick_ref/textmessageabbreviations.asp

You can copy and paste if you want for your own reference. I can't here because it is like plagerism.

By sannph On 2010.06.22 19:01
Thanks for that link--I also took awhile to figure out the FIL!

By sube56 On 2010.06.22 20:15
Thanks to all,You just don't know what it means to be back. Mom has PD,She is advancing in her symptoms,and like many of you I am her caretacker. When I first came to this site I was overjoyed. The people who really understood what I was just begining to understand.
The thing that happened was that i really learned to fast. I did not take the time to see That pd is progressive; I had all but decided mom was in her last stages.
To learn and let sink in was my problem,And Then the blunder,Well I was ashamed to get back on.
Mom has been offered the deep brain stimulation operation, she is78,Does Anyone know anyone who has had it,Her neuro doc say's that she is perfect for it,and in the same sentance said that medicare may not cover it next year.
sorry I've rambled on,

By LOHENGR1N On 2010.06.22 23:50
sube56, I know some that have had it and swear by it, however I know some that wish they never had it. I guess it's a toss of the dice. It won't stop the progression of this disease, She will still have to take Her medication's (some have been able to reduce the amount of medication, some have not). As I understand it, it can help reduce tremor and aid a bit with balance but it is a temporary measure. There are a lot of things to be considered as with any brain surgery the risk of complications is great. I myself am not a fan of this procedure. Some here on the forum have experience with it and are satisfied with the results. Sorry I can't give you a better answer. It is a bit of concern that the Doctor mentioned next year medicare may not cover it. It raises the questions why? This is still relatively new, meaning it hasn't had years of follow up to see what long term results are. It was rushed through to be made available without the regular study time once given these things. One would hope the Doctor did not mention the coverage as a leverage to get a quicker agreement to go ahead with the operation. As I said I'm sorry I can't give a better answer other than it is better to weigh all pro's and con's and make as good an educated decision as you can about this without having the doctor throwing a time limit at you. Take care, best of luck and hang in there.

By lurkingforacure On 2010.06.23 08:59
There are some threads on this forum about DBS, also there is a yahoo group forum just for DBS that is huge and should be an excellent resource for you.

I have read they are looking at placing the leads in different places in the brain and depending on that, there is different symptomatic control...but as Al said, it doesn't work for everyone and I'd be very careful about proceeding forward. It IS brain surgery after all.

The thing I would be mostly worried about, though, is just the fact that a 78-year old is having surgery in the first place. My FIL (79) had heart surgery last year and boy, the cognitive issues he had from the anesthesia were mighty scary....it took him over six months to "return", and he isn't back to where he was before the surgery. I'm talking he didn't know what year it was two months after the surgery, it was sooo strange. We all know the senior brain is highly delicate and exquisitely susceptible to effects from anesthesia....some recover, some do not....and there is no way to predict what you might experience.

I just dodged a big bullet for my own mom who was told she had to have this huge surgery (by four docs, no less)....I insisted on seeing a second opinion specialist who discovered, by actually talking to my mom about her symptoms, that she does not even need the surgery (he actually told us she needs physical therapy which could not please me more). In the course of that appointment, when we were talking about the surgery when we thought we needed it, I asked the doctor about anesthesia effects I could expect on my mom, and he said there would definitely be those, but he had no way to predict how severe they would be....noting that the longer one is under anesthesia, the more severe the effects might be (her proposed surgery was 3 hours plus, so I was really pushing for some alternative treatment).

I think this is one reason they are pushing DBS for younger PDers, the risk of complication is much less, in every way. It's such a hard decision, but at least there is a LOT of first-hand, anecdotal experience out there to review before you decide. Good luck.

By Emma On 2010.06.23 09:28
DBS is a hard decision, the potential for some improvement is there but so is the potential for serious risks and after effects. Not only can the anesthesia cause cognitive problems but so can the surgery itself, that's one of the possible risks. We went through this decision process last winter. Before we went to the movement disorder clinic I did a lot of research and talked to my husband about the risks and benefits. Neither of us was too enthusiastic but we went for the evaluation anyway. As it turned out he was not a candidate for the surgery because he has dementia. I was relieved that the decision was out of our hands.

I agree with lurkingforacure, I would be very cautious about subjecting someone in their 70's to elective surgery that may or may not help and carries serious risks. On the other hand, many people have had this surgery and been very pleased with the outcome, including some people on this board. Hopefully they will post about their experiences too.

I would say find out as much as you can and get a second opinion about your mom's suitability as a candidate.This is serious stuff and needs serious consideration. Good luck whatever you decide.

By packerman On 2010.06.23 13:46
hubby had his DBS implanted at age 51 (Nov 2007). surgery was at a major teaching hospital (Vanderbilt). it has helped a lot and given him a better quality of life than he had. his recovery was fine with no complications. He's glad he did it.

not sure i'd recommend any elective surgery for someone in their 70's, though. seems to take a lot out of people the older they get.

By sannph On 2010.06.23 22:38
My husband had DBS (4-09) at age 53. It definitely helped his rigidity issues; however, it did not make any difference for the balance issues that he has. His speech and swallowing has gotten much worse since surgery; his primary neurologist (who sent us to another neurologist/neurosurgeon team for the surgery) says it's because of the surgery. It is alot to consider, and if we could go back my husband isn't sure he'd go through it again.

By sube56 On 2010.06.24 16:07
We have decided NOT to have the DBS,Thanks to all for your input. We will continue to take the journey of PD. Mom is in her 3rd year of being told she has PD;although I believe that she has had it a lot longer, she has a lot of problems in the evening hours,Uncontroled movements,speach problems,stumbles. She is also showing signs of anger at me,I think that is the worst,the anger.I feel so helpless.And lonely, It's almost like being in jail,Being the only caretaker is The hardest thing I've ever done.(By the way ,I've never been in jail )

By Pearly4 On 2010.06.24 17:01
Your comments remind me of my time caring for my mother - there was so much anger. Everything was my fault from the disease itself to having to leave her home to having to come here to live, to living so long with the disease! I finally had to work hard at convincing myself it wasn't my mother, it was the disease talking, and get passed it. I turned from daughter to caregiver for a while. Its a rough road.

I can assure you though that once she died and in a very short period of time, I found that the good thoughts and times returned and I found too that it was easier than ever to see that its was the disease talking in the bad times. I will keep you in my thoughts, but know that while its the hardest things you'll ever do, I for one will never tell you that you won't regret it -- you will, and you'll hate it and you'll be glad when its over and feel guilty because you are glad. But in the end you'll get through it, you'll know you did the best you could do, and you'll remember the good times, have the good thoughts and find your mother again!

By hubb On 2010.06.24 17:52
The anger is very hard to take and nobody knows until they have walked that particular path how lonely and difficult it is to see a spouse or parent disappear over a long time, losing the history you've shared together, having to make hard decisions alone and having to put another person's needs and wants before your own can be very stressful. It's pretty difficult to stay pleasant and patient all the time. Al had posted on one of the other forums an article entitled "The Long Goodby" and that sums it up pretty neatly. I remember a Dear Abby column about caretaking and this whole subject was referred to as "grief-as-you-go guilt" and when you watch a loved one turn into an angry, helpless, needy individual, sometimes you just feel that you can't cope with it....but you do and you keep on going and doing. Just know that you are not alone. We all try to do our best for our loved one and that's all we can do.

By LOHENGR1N On 2010.06.24 19:57

sube56 and the many others who "think" their loved ones have had Parkinson's Disease prior to diagnosis. Yes, you are all correct. 80%, (some studies say 60% to 80%) of the dopamine producing cells in our brain have died before the diagnosable signs and symptoms of Parkinson's Disease appear and We are diagnosed. So We've had it for a long time slowly, quietly going about it's business until it can't hid anymore. I just wanted to toss this out so you would know that you are right as We patients do have P.D. long before it is diagnosed. Take care, best of luck and hang in there.

By rmshea On 2010.06.24 20:35
Thinking back, I know w/o doubt my MIL had this long before even her heart surgery. She obsesses over where the PD came from, how she 'caught it'...for awhile she thought it was from the apartment we moved her into. But her slowness, depression, weakness in her hands, anxiety, heat intolerance goes back 10-15 yrs. I've told her this but she won't believe me; she asks every medical person she sees how she got this--her gp, her cardio, her eye doc!!! As she was in her late 60's, everyone wrote it off as aging. Now that she's 82, her previous neuro was like, what do you expect?? You're fine...and she was not. I don't think medical people as a whole take people over 80 seriously.

By parkinit On 2010.06.27 22:50
My husband and I had a "come to Jesus" meeting at our last appt. He noted that there is a time to quit fighting the disease and sometimes fighting it can make things worse. The neurologist also stated that when it comes to the spouse, it is the "comments" that hurt spouses more than the physical or any other aid they provide. He said and it will happen, they will be angry, make rude comments, be unappreciative (I've already experienced all of these), but you have to understand that is mostly the PD disease and to not take it personal. A good word of advice for all of us.


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