For those who care for someone with Parkinson's disease
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By GladIhavehorses On 2012.12.30 00:55
Oh my gosh. I am so glad I found this site. My husband who is 64 has been diagnosed with PD 4 years ago. I must admit that I have been having trouble dealing with it. But after reading what others are going thru I realize That I AM NOT ALONE. I have learned so much about what a PD person goes tru that no Doctor has told us and no book covers. I am so grateful that everyone is willing to share their experiences good or bad.

By lurkingforacure On 2012.12.30 09:49
Hello, glad, I'm glad you have horses too, animals can be very comforting. Welcome to our forum although, I am sorry it's PD that brings us all together. You will find a lot of love, comfort, wisdom, and advice here, so don't be shy:)

By Trusting On 2012.12.30 11:43
Welcome! I still feel new at this too. I am just realizing that my husband is so much better than so many others. I sometimes get to feeling a little sorry for us until I read what others are going through. It has helped me and I hope this site helps you.

Please come back often and share and or vent.

By jcoff012 On 2012.12.30 12:05
Welcome, Glad,

Been four years for us, too, although for years several of his symptoms were sloughed off by doctors as symptoms of other diseases...Even though his Mom had Parkinson's for 22 years, misdiagnosis was possible.

You have come to the correct board. The posters here are at different stages of PD, so their insights are amazing and help in this battle. No one wants to be here, but we are.

One thing I have learned is opinions are just that...take what helps, absorb the rest, but rely on your/his doctors. Another thing Al has taught us is to realize that although this disease changes everything, the PWP is still the same person inside and what we see/experience as the disease progresses is the result of years of meds, continual loss of dopamine, and NOT something WE did. As he always says, we are in this together.

Hugs to you and keep coming back. there are some pretty amazing people here! Jane

By GladIhavehorses On 2012.12.31 00:31
Thanks everyone for the welcome. Even though its only been 4 years since my hubbies diagnoses, we too can recall symptoms as far as 10 years back. I guess i should start with something that concerns me the most about hubby. Since he has been diagnosed a day doesn't go by that he doesn't have his condition on his mind. He constantly refers to himself as a Parkie and blames any fumble or health issue on him having PD. I hate to say this but, I sometimes wish that the Doctors didn't tell him he had PD so that he would go on living instead of waiting for the grim reaper. Sometimes there is such a dark cloud in this house. And yes I am so glad I have my horses because I can escape into the stables and talk to my Girls (mares).

By jcoff012 On 2012.12.31 11:28
I think that's normal...not just with PD, but other life changing diseases. One always wonders, is this because of PD/cancer, etc...After five years, six in February, I was declared cancer free, but now have lymphedema in my left leg, so I cannot ever forget I had it...it's a constant reminder...perhaps your husband is fixated on something about PD and cannot let it go...at least some of the time! My husband needs to accept PD DOES limit him somewhat, instead of plunging ahead as if he were 100% ! To each his own as to how one deals with this, I guess...

Good luck and again, glad you are here. Jane

By tinag0131 On 2013.06.30 12:56
I am new too. I am so glad I found this site...so much info.....I have really been down lately..my husband has had PD for six years. I can deal with the physical but having a hard time with the mental. He is a different person day to day....I feel guilty for complaint and tend to say ..we are fine....believe me I needed this ..I dont want to be alone in this..

By phoenix On 2013.06.30 22:33
Oh, you are so not alone. I have often said the same thing, the physical challenges would be so much easier to cope with, but the mental changes just wear you down day after day. My husband can no longer be left alone at all because of all the things he does, and I never know what to expect from one hour to the next. Never feel guilty for complaining, especially not here where we understand.

By parkinit On 2013.07.01 11:54
tinag & Glad -

I'm glad you found this site, and I agree that the mental changes are the most burdensome.

I respectfully disagree with Jane's comments that our PWPs are still the same people inside. Mine isn't. His mental capacity, his thought process, his behavior does change and he IS NOT the same person I married a few years back.

I did not marry someone who was addicted to porn (as he has been in the past). I did not marry someone who frequently has harsh words (and rarely filters his words) and would strike out at a caregiver (as he has done recently more than once). I have had to come to terms with this "new behavior." I did not marry someone who happily drools in public and insists to others as I furtively had him a tissue, "It bothers her more than it bothers me." Yeah, it doesn't bother him at all. I, too, am afraid of what he might say or do in public.

Just a few months ago, we had a guest in our home (and I guess in his euphoric, levodopa high, he forgot this). I was visiting with her in the living room when he apparently fired up his computer. We heard loud moans and groans coming from his computer, and I had to harshly tell him I had a guest and to turn the computer off, please.

Yeah, we don't go out much either for all of these reasons and more. So, sorry, but it struck a note of discord when someone says my spouse is the same inside. He is not.

By lilflower On 2013.07.01 17:17
Welcome , yes we all need an outlet. Parkinson's does change our loved ones in so many ways. How we deal with the changes and handle the every day stress is something we all have to figure out. It's different for each of us. I found prayer has helped me in many ways. It's been close to 30 years Parkinson's has been a major part of our lives and I can honestly say my Hubby and I have gotten this far together. He is not the only one that lives with PD , I do every day and in every way. The past 2 years have been the toughest , yes your life changes , he changes and its not easy but always talk to each other keep the line of communication open. Remember the things happening are the disease not the person you love. It's tough and I know it's never going to get better but I want to believe everything I do to help makes his day a bit easier. We use humor to deal with some things, laughter helps and so does this forum.

By jcoff012 On 2013.07.01 17:52
Park, no need to "respectfully"disagree.
....disagree! ;) seems we all face this at so many levels and in so many ways that are different than the next person. So, everyone's experiences are helpful to everyone else. Hugs.

I think what I meant, is that we watched my MIL for so many years (22+), and she was still the lovely, kind Southern woman she always was...and so far, my husband is, too...he does have bouts of anger, etc., but I am trying as best I can to accept the changes as they come. Perhaps farther down the road, this may all change and we may be walking in your shoes.

I guess I just know how difficult these last years have been for my husband, so if stress was a factor in this journey, I want to accept what is coming, knowing our lives together may have worsened the PD. For now, we manage...I do thoroughly read all the problems and solutions posted here, sifting out what we may need sooner than later. I do appreciate your insights and wisdom. Please, no one ever needs to take offense to anyone else's opinion...all are based on life experiences...and, sadly, some appear to raise their heads at inappropriate or unwarranted times. Again, so far, we are managing...my heart hurts for anyone facing the impossible..I wish I could help. Jane

By carman96 On 2013.07.01 22:01
Yes I think the dementia is the worst. The physical part can be explained. But the mental part is a mystery . What will he be like today?
He's still the same guy in a lot of ways but sometimes he's just not all there. We are all on different levels but none of it is easy.

By LOHENGR1N On 2013.07.02 00:08
I'm confused, when caregivers speak of dementia and it fluctuating? Or appearing one day but not the next? Dementia is a slow onset and progression of executive thinking and reasoning. It comes on slowly and keeps progressing. The other D word Delirium can be caused by illness, fevers and medication. So it's confusing when reading who will show up today or tomorrow or change from morning to afternoon. Delirium can be helped. If caused by the medication adjusting the dose or stopping the medicine will stop it. It makes me wonder if Patients and Their Caregivers/Partners are suffering needlessly because of confusion of these two terms?

In light of the great posting about how some doctors may feel about treating terminally ill patients and thinking about television ads that bombard Us about new medicines that may cause side-effects and we should "discus them with our doctor as the doctor may think the benefits might out weigh the risks" If you'll follow along this line, We enter for our appointment and are complaining about movement or tremor, maybe freezing? The Doctor says well we'll try this it should help. We fill the prescription and start taking the pills. Soon We're forgetting stuff and our caregivers notice. Oh G-d! Is it Dementia? Is this another stage? Six months later at the next appointment the Doctor wants to know if the new medicine helped? It seems to but I think He/She's getting dementia you respond. The Doctor may nod their head or make a note and say well lets leave the dose as it is for now if it seems to be helping and see you in six months! We walk out thinking well it must be dementia. However what has happened is the Doctor prescribed a medicine it helped the tremor or other complaint we had before. They know a side-effect of the medication is fuzzy thinking or memory problems BUT ...it help the first original complaint or The result (benefit) out weighs the side-effect to them. Meanwhile for another six months We fumble around wondering what's going on with Us and You our caregivers lose hours and even nights of sleep fretting about the future sure it's dementia unsure of how long you'll be able to care for us what you will do suffering thru the days saddened by our decline and Jeckle and Hyde behavior. Thing like this happen every day. That said Dementia is very real and a problem of Parkinson's Disease however it is not as wide spread in Parkinson's as many believe. I hope you don't think I'm belittling dementia or down playing it. That is not my intention. my intention is to give hope and information to those who notice sudden changes in thinking and behavior. We have to ask the Doctors about the side-effects and what's "normal" to occur when taking a medicine. Take care, best of luck and hang in there.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By parkinit On 2013.07.02 00:32
Good points, Al. Most of the side effects of many of the drugs my spouse takes involve issues he has always had: constipation and "confusion." Okay, so is the only way to find out to halt the meds, and which is worse - confusion or rigidity (he doesn't have the tremors). He claims he hurts all over when he is stiff and he can barely talk, so do we allow a bit of confusion and enhanced constipation in order to allow him to move a little bit? It is a very tough decision and one I question more and more. Do you want to think clearer and not move and hurt or do you want to not think clearly and be able to move a bit?

Talk about choosing the worse of the two evils...

By carman96 On 2013.07.02 07:03
You do have a point Al. Dementia or drug side effects? Who knows? My husband has been diagnosed with Dementia by at least 4 doctors and I have seen his cognitive function decline for several years. And yet he still has moments of clarity and being his old self.
I saw this with my father who had dementia but no physical problems and on no drugs at all.
So with PD I guess it can be a trade off.

By Sheridan On 2013.07.02 10:32
I am also fairly new to this forum although my husband has had PD for 15 + yrs. I agree with Al that the MD's are giving PDers what they ask for, namely relief from their various symptoms. What bothers me is that they don't tell us what the side effects are, what to watch for and how devastating they can be. ( was I just not hearing?) Not all patients will experience all side effects so maybe that is why they hold back? The side effects happened gradually over time. After years of on and off behavioral changes ( ?? I often wondered if it could bedementia) it took a major crisis and almost losing my husband and marriage to find that many PD drugs are poison, especially after prolonged use. We were told that my husband may have to choose between his mind and his physical abilities. Living with the almost total physical shutdown sent us back to the MD for some relief. We were given 1mg Neupro patch and the physical results were dramatic but then the side effects, verbal abuse, paranoia and manipulative behavior started again as well. This time I knew what was happening and we reduced the 24 hour patch to 12 hours and have since had to reduce it to 6 hours daily. We will see if we can strike a balance but I am afraid my husband may not be able to take the PD agonists anymore and I know that I cannot live with the side effects...

By FrankieCat On 2013.07.08 03:21
Hello, I'm new to this site too. I'm in my early 30's and my dad has had PD for 14 years. My mom and I are his main caregivers. His PD was pretty manageable until a few weeks ago when he started showing signs of dementia. This has not been confirmed as dementia but he is very confused, has a lost look in his eyes and is unable to formulate sentences. I'm glad I found this website because I've been feeling pretty sad lately. I don't want to lose my dad but I know this disease is a vicious one and until there is a cure we have to keep fighting this tough battle together. Thanks for listening to my story.

By jcoff012 On 2013.07.08 18:56
Frankie, I am sorry to post and run, but I have to take my grandson to his Mom...we watch him so she can work. Just wanted you to know you are welcome here and someone has read your post. More will respond, and you will find many good friends here. Jane

By carman96 On 2013.07.10 23:59
Frankie
Please read other posts about medication side effects. Dementia comes on over months and years not weeks. Also watch for infections. Please talk to his doctor about this since the decline is so rapid.
good luck

By parkinit On 2013.07.19 18:06
Welcome, Frankie -

I agree, it is not dementia if it comes on suddenly. The first things I start checking if I note confusion are other symptoms (stomach ache, nausea, fever) of a UTI. This has usually been the culprit for us. Especially if they wear depend-like products or external or indwelling catheters. We qualify on two counts for above, so my spouse is highly susceptible.

We were also told by our GP that my spouse should have never been sent home with a kidney infection, which he was after a round of IV antibiotics and sent home with levaquin. Live and learn . . . we all do!


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