pd dementia

[JoAnn]

Does anyone have any advise as to dementia related to parkinsons? My husband does have some memory problems but nothing too severe, but he has a terrible time "seeing" things that are right in front of him. His eyes are fine and the md said it is the brain that is causing that. But it just keeps getting worse. He says he feels everyday that it is a little worse than the day before. I haven't found anyone who can help with this. Is there a special doctor that handles this particular problem with pd? Appreciate any help anyone can offer.

Thanks.

JoAnn

[MargieB]

Does anyone have any advise as to dementia related to parkinsons? My husband does have some memory problems but nothing too severe, but he has a terrible time "seeing" things that are right in front of him. His eyes are fine and the md said it is the brain that is causing that. But it just keeps getting worse. He says he feels everyday that it is a little worse than the day before. I haven't found anyone who can help with this. Is there a special doctor that handles this particular problem with pd? Appreciate any help anyone can offer.

Thanks.

JoAnn


Hi JoAnn,

I don't know about any special doctor to treat dementia but I was just thinking, maybe you could ask your husband's present neurologist or your general practiotioner if any of the medications he is taking could be causing this symptoms mimicking dementia. Your husband, as well as you are probably so stressed about this you are both getting afraid. Try not to.

I notice that when my husband Tony tries to "see" too many things at once, he gets confused or has something we call tired brain. When he eases up and does try to see one thing at a time at a slower rate...and stop the compulsion to take in a few things at a time, the situations corrects itself. His brain is very active, he just has to adapt to it not working at fast rates of speed.

Maybe the above will work out for your husband too. I hope so, very much.

JoAnne, if you aren't going to your husband's doctor(s) for a time, maybe give them a call. I wish you and your husband a good day.

Good luck.

Margie :)

[grldnklly]

Hi Joann,
What you describe sounds to me as if it might be the result of medication. My father (I am his carer) sometimes has these problems too, but not all the time. I have found that this problem can occur if my father is under-medicated. At first I assumed it was the start of dementia.
You should speak to the consultant, or even your own doctor. There is a very simple test that they can do to assess whether or not it is dementia.
Let me know what happens.
God bless
Geraldine

[bruce]

Does anyone have any advise as to dementia related to parkinsons? My husband does have some memory problems but nothing too severe, but he has a terrible time "seeing" things that are right in front of him. His eyes are fine and the md said it is the brain that is causing that. But it just keeps getting worse. He says he feels everyday that it is a little worse than the day before. I haven't found anyone who can help with this. Is there a special doctor that handles this particular problem with pd? Appreciate any help anyone can offer.

Thanks.

JoAnnHi, Jo Ann, I suffer from dementia. My dr., sent me to psych doctor. He gives me Airocept and nemendo (taken by alsheimer patients) He said he could only slow things down but can not stop dementia. I find reading writing watching game shows help me. I have very little short term memory left and consentration is difficult at times. I was given aregiment of test to assess diagnosis. I feel that I am holding my own and am extremely greatful for what I have left in my mind. bruce

[heather]

Hi all
Jim went to see a neurological psychologist,he was referred by the psychologist who was treating him for his depression,
they did a scan ,and then 2 days [ because he was getting to tired to concentrate] of memory testes ,mainly showing pictures,
and yes and no questions, some writing but he had problems holding a pen
The result was
Long term memory very good
short term not so good
but a interesting thing was, when he was getting tired his short term was terrible, so the second day they took him back one test, and he passed it no problem
So now if he gets over tired I try to give him simple questions
with a yes or no answer ,as i found he can't cope with full sentences,like tea time,i don't ask what he wants to eat,i show him ,and he point's to what he wants
hope that makes sense

[JoAnn]

I want to thank all of you who responded to my question re: dementia. You have given me some things to go with and try. Again. Thanks.

JoAnn

[JoAnn]

Hi Bruce. Thanks for responding to my request on pd dementia. You mentioned you are on airocept and nemendo. What is nemendo. My husbands doctor did try airocept for a month but that didn't seem to do much so he discontinued it. How much do you take of each med?

Thanks.

JoAnn

[bruce]

Hi Bruce. Thanks for responding to my request on pd dementia. You mentioned you are on airocept and nemendo. What is nemendo. My husbands doctor did try airocept for a month but that didn't seem to do much so he discontinued it. How much do you take of each med?

Thanks.

JoAnnMy dr. said that one works from one end and the other from the other end---What ever in the hell that means. I take each pill at bedtime. I believe they are 40mg each. They do make a difference for me. If I miss a couple of days I begin to get confused about little things. I hope this helps. bruce

[Roberta]

Thanks JoAnn for your question on dementia. I had begun to think that only my wife (Roberta) had dementia with PD. The neuroligist assured me that it was so but I had never met anyone with both. JoAnn I do not think you are being cruel in making decisios for Jim. My wife has reached the point where the only decisions she makes are no. If I want to go anyplace that is neccessary, I have to tell her we are going. I have purhased a van to transport her and she always objects to going anywhere but once I get her in and go, she seems to enjoy it. Think dementia is the worse part because she does not understand why she is in pain, why she can't walk or why she needs medication. Thank you all for your input. Roberta's caretaker.

[heather]

Hi Mr R :D
I bought Jim a converted van December
http://i10.photobucket.com/albums/a126/maesisaf/Picture036.jpg
http://i10.photobucket.com/albums/a126/maesisaf/Picture037.jpg
I had a extra seat put in so can have 4 passengers me and Jim
I find he would rather stay at home than go out, till we get out, then he enjoys himself

[grldnklly]

Hi,
I would agree with you both. I always have to coaxe my father to go out, but when he does make the effort he enjoys it. I think part of the reason is that he is embarrassed about people seeing him walking. He has often said to me that people will think he is drunk. I always say that if they think he's drunk they will probably be jealous.
God bless
Geraldine

[MargieB]

Hi,
I would agree with you both. I always have to coaxe my father to go out, but when he does make the effort he enjoys it. I think part of the reason is that he is embarrassed about people seeing him walking. He has often said to me that people will think he is drunk. I always say that if they think he's drunk they will probably be jealous.
God bless
Geraldine

Hi Geraldine,

I agree also. Sometimes we have to coaxe Tony to go out but as you all said...when he does go out he enjoys it. Tony is embarrassed about how he walks and looks. I'll tell him if they look at us, they'll leave someone else alone :D.

Just keep going out, enjoying the sunshine (or rain) and try to have a sone in your heart.

Love,
Margie:)

[Diane]

Hi, JoAnn. Your situation sounds much like ours. The dementia continues to progress (for my husband), but we have had some success with a cocktail of pharmaceuticals. In addition to his Parkinsons meds, my husband takes Zoloft (antidepressant), temazapam (sleeping pills), Seroquel (antihallucinogen), and Zelapar (not sure what it is, but Dr. said it increases the effectiveness of all the others).

The hardest lesson to learn about dementia was this: the PD patient will not tell the Dr. the entire truth about his condition and the problems it is causing, especially dementia. I think this comes from (a) he doesn't realize how bad the symptoms are; (b) he is embarassed about the things he does; and (c) it truly is the caregiver who suffers first from the effects of the dementia.

In my case, the hallucinations and the paranoia caused me so much grief and anger that I "exploded" in the neurologist's office. The dr. asked my husband how things were going, and he said, "fine". That was the last straw! At first, I spoke out in anger, telling the dr. about the accusations and the hallucinations. Since then, I have learned to speak out in frankness, in hopes of getting further help. As it turns out, the only help we have had is chemical, but I will accept any help we can get.

Now, we have come to a new crossroads: We have a different relationship, now, based upon my feeling that we can still be married but we will never have the trust between us that we once had. When the trust is gone, much is lost and changed forever. I have accepted that, but he cannot. He wants us to have our "old" relationship back, but I can't feel the love I once felt for him. He sees me as an untrustworthy person (and believes that I have done terrible things to him and to the foundations of our relationship) but he says he still "loves" me. To me, that is a contradiction. How can you love someone who you really believe is a traitor to the marriage and to you?

We are now going to try counseling again. Other counselors in the past have told us that my husband needs to work on the issues he has created in his mind. Now, we are to see a new counselor, and I know my husband wants me to work on trying to work around the mistrust. Frankly, I don't think I can. He has attacked me and my fidelity so many times that I am always on the defensive, wondering where the next attack will come from. I am not optimistic but please wish us luck.

Diane

[Juanita Mullin]

Hi Diane,
I wish there was something I could do to help you. I don't have the wisdom, or the ability. I do care that you hurt, and I believe your husband does also. I will pray for your situation and that you will find the help that is needed to take care of this. May good days be yours soon.
Juanita

[suzie Q]

Hi Diane hope you can get things sorted out .It is a cruel disease this parkinson's ,it robs us of so much ....Look after yourself

sue

[Diane]

Thanks to both of you and all the people reading this forum and "rooting" for us.

Roark saw the counselor last week; I saw her today. The result is saddening: she does not think counseling is going to help much, if at all. She believes he is suffering from nontreatable dementia. She is willing to meet with us a couple more times to facilitate our transitioning into our new roles. She says he might be able to see some things rationally when in therapy, but that such breakthroughs will not hold; he will soon revert to the dementia-induced perception of reality.

I hope those of you who are experiencing different problems will not be too alarmed by our experience. Less that 40% of PD patients develop dementia. I know I am feeling sorry for the two of us right now, but I feel like the physical symptoms are something we could have dealt with and had a good (not perfect) marriage and life. Add the dementia, and I am not sure where we will go from here. The counselor is concerned that I need to recognize that he will not get better, but only worse. I will have to be alert to the dangers he can put himself in by acting on his hallucinations and delusions. He will need more and more supervision.

I wish I had a more uplifting report for you, my forum friends. I will be back with a better face on it next week.

Diane

[Margie2]

Thanks to both of you and all the people reading this forum and "rooting" for us.

Roark saw the counselor last week; I saw her today. The result is saddening: she does not think counseling is going to help much, if at all. She believes he is suffering from nontreatable dementia. She is willing to meet with us a couple more times to facilitate our transitioning into our new roles. She says he might be able to see some things rationally when in therapy, but that such breakthroughs will not hold; he will soon revert to the dementia-induced perception of reality.

I hope those of you who are experiencing different problems will not be too alarmed by our experience. Less that 40% of PD patients develop dementia. I know I am feeling sorry for the two of us right now, but I feel like the physical symptoms are something we could have dealt with and had a good (not perfect) marriage and life. Add the dementia, and I am not sure where we will go from here. The counselor is concerned that I need to recognize that he will not get better, but only worse. I will have to be alert to the dangers he can put himself in by acting on his hallucinations and delusions. He will need more and more supervision.

I wish I had a more uplifting report for you, my forum friends. I will be back with a better face on it next week.

Diane

Hi Diane,

I am not new to the Forum, I have been a member since it started...but due to many circumstances in our lives, I have not been able to visit here too often lately. My husband has PD. He was diagnosed 5 years ago, but we are suspect that he had it quite a few years before diagnosis.

PD is a cruel, relentless disease that not only hurts the Parkie but all who love him/her.

I feel so sad for you and your husband. I understand your feelings of despair. But please don't give up on yourself...or your hubby. Just, maybe, this counselor is incorrect in her diagnosis and in what she is telling you. I don't know if you every heard the expression: "Nobody eats spagetti the same way!" The point I'm trying to get across is...if you feel there is a chance, even a slight one...in continuing your marriage...if you have hope...try another counselor. Even if you have to try a few...you need someone to help guide you and maybe...just maybe your husband will get the medication(s) he needs to rid him of the 'demons' that PD has inflicted upon him.

God bless you both. I will keep you in my prayers. Don't give up hope.

Sincerely,
Margie2

[Margie2]

Hi Diane hope you can get things sorted out .It is a cruel disease this parkinson's ,it robs us of so much ....Look after yourself

sue


Hi Sue,

Margie here. Just to let you know you are still very much in my heart and thoughts.

Things have been very tough here at home lately. But I'm hanging in there for brighter tomorrows for Tony and me.

I wish you sunshine in your days and peace in your dreams.

I think of you so often.

Margie2

[Margie2]

Hi Diane,
I wish there was something I could do to help you. I don't have the wisdom, or the ability. I do care that you hurt, and I believe your husband does also. I will pray for your situation and that you will find the help that is needed to take care of this. May good days be yours soon.
Juanita

Hi Juanita,
Those are beautiful sentiments you gave to Diane. It is so like you.

I think of you often and hope I will be able to visit our Forum more often in future days.

Things are not too good here at home...but I believe that the tomorrows will be much better.

Please keep your lovely smile (I always imagine you with a lovely smile on your face when I write to you...I don't know why...but I just do).

Margie2 (Remember me?)

[suzie Q]

Hi Margie good to see you back on the forum .i hope that Tony is ok and you are looking after yourself Don't ever give up hope there is going to be a cure ,one day we are going to wake up and hear on the morning news that they have finally found it We have to have hope and goals to look forward to.While i am waiting for the cure i am looking after myself trying not to let this disease get the better of me .i am working still keep myself busy ,enjoying my beautiful grandson and making the best of a bad situation .i figure we only have one life so we have to make the most of what we have .i have days when i get down and think why, but then i think at least i am here to enjoy my family i can do everything mostly that i have always done only a little slower.

make sure you come back again soon we have missed you


Sue

[suzie Q]

After what i posted yesterday .I woke up this morning and this article was in our newspaper



Parkinson's motor function restored

A Japanese university has succedeed in restoring the motor function of patients suffering parkinson's disease by injecting their brains with a virus with a built in gene that has an enzyme to produce dopamine.

Five out of six patientsundergoing the therapy hadshown some recovery in their motor functions.the Jichi Medical University said .

One patient who had been unable to move had become able to perform normal dailey activities, the hospital said.


It goes on to describe the disease and symptoms but we alll know these so saved my fingers typing.


As i said before remember the cure it will come .



Sue

[Margie2]

Hi Margie good to see you back on the forum .i hope that Tony is ok and you are looking after yourself Don't ever give up hope there is going to be a cure ,one day we are going to wake up and hear on the morning news that they have finally found it We have to have hope and goals to look forward to.While i am waiting for the cure i am looking after myself trying not to let this disease get the better of me .i am working still keep myself busy ,enjoying my beautiful grandson and making the best of a bad situation .i figure we only have one life so we have to make the most of what we have .i have days when i get down and think why, but then i think at least i am here to enjoy my family i can do everything mostly that i have always done only a little slower.

make sure you come back again soon we have missed you


Sue

Hi Sue,
I've managed to get a little time on my computer and when I 'peeked' on our Forum, there was the lovely note from you to me.

Tony is going through some very difficult times at the moment. But his new neurologist is encouraging us to keep up our hope and is working with Tony and his meds to help improve Tony's walking, etc. This doctor is the first that Tony has had that talks with us, listens to what we have to say, answers all our questions and is the main neurologist in an excellent hospital (St. Francis Hospital) here in Queens, N.Y.

The doctor believes a cure is coming, just as you and we do. So we will HOPE together, ALWAYS! I believe as you do that one morning we will wake up and hear and/or read in the news that the cure for PD has been found-plus- the cure will benefit all Parkies.

I'm so glad you are doing the things you always have done. Don't worry about doing them slower. My Mom had a saying: "Slow but Sure". That is so true! Never mind that you are doing things slower, when they are done, you have accomplished MUCH. I admire you and your persistence. Keep it up Sue. Tony and I are rooting for you.

I'm also so happy for you that you get to enjoy your grandson. I know he definitely enjoys you, his Grandma.

Will you join me and have a cup of tea (or coffee)? Whichever you prefer, I will serve.
http://i976.photobucket.com/albums/ae242/jenkinsonn/tea_11.gifBut we must have some pasteries too. Don't you agree? http://i260.photobucket.com/albums/ii3/silvereye64/french%20pasteries%201/100_0096.jpg
With love,
Margie

[Margie2]

Hi Sue,
I've managed to get a little time on my computer and when I 'peeked' on our Forum, there was the lovely note from you to me.

Tony is going through some very difficult times at the moment. But his new neurologist is encouraging us to keep up our hope and is working with Tony and his meds to help improve Tony's walking, etc. This doctor is the first that Tony has had that talks with us, listens to what we have to say, answers all our questions and is the main neurologist in an excellent hospital (St. Francis Hospital) here in Queens, N.Y.

The doctor believes a cure is coming, just as you and we do. So we will HOPE together, ALWAYS! I believe as you do that one morning we will wake up and hear and/or read in the news that the cure for PD has been found-plus- the cure will benefit all Parkies.

I'm so glad you are doing the things you always have done. Don't worry about doing them slower. My Mom had a saying: "Slow but Sure". That is so true! Never mind that you are doing things slower, when they are done, you have accomplished MUCH. I admire you and your persistence. Keep it up Sue. Tony and I are rooting for you.

I'm also so happy for you that you get to enjoy your grandson. I know he definitely enjoys you, his Grandma.

Will you join me and have a cup of tea (or coffee)? Whichever you prefer, I will serve.
http://i976.photobucket.com/albums/ae242/jenkinsonn/tea_11.gifBut we must have some pasteries too. Don't you agree? http://i260.photobucket.com/albums/ii3/silvereye64/french%20pasteries%201/100_0096.jpg
With love,
Margie
PS Sue, I am trying to submit reply but it isn't going through. It says that my message is too short, so I am adding these few lines just to see if I can submit it this way. Keep your fingers crossed. I know you will enjoy the pasteries (yum! yum!) Margie

[heather]

Thanks to both of you and all the people reading this forum and "rooting" for us.

Roark saw the counselor last week; I saw her today. The result is saddening: she does not think counseling is going to help much, if at all. She believes he is suffering from nontreatable dementia. She is willing to meet with us a couple more times to facilitate our transitioning into our new roles. She says he might be able to see some things rationally when in therapy, but that such breakthroughs will not hold; he will soon revert to the dementia-induced perception of reality.

I hope those of you who are experiencing different problems will not be too alarmed by our experience. Less that 40% of PD patients develop dementia. I know I am feeling sorry for the two of us right now, but I feel like the physical symptoms are something we could have dealt with and had a good (not perfect) marriage and life. Add the dementia, and I am not sure where we will go from here. The counselor is concerned that I need to recognize that he will not get better, but only worse. I will have to be alert to the dangers he can put himself in by acting on his hallucinations and delusions. He will need more and more supervision.

I wish I had a more uplifting report for you, my forum friends. I will be back with a better face on it next week.

Diane

Hello my dear dear friend
I no what you are going through, Jim started about 5 years ago, with the hullucinations, and vagness when i speak to him.
The one i find hard is, when he acknowledges other people, and turns his head away from me, when he does this i tell him off in front of the other person, as i feel he can't get away with it, especially if he is awhere of what he is doing, though Jim can't walk, talk, feed himself etc etc, i do feel my life is much easier than your's my friend, at least where i put him, be it his chair, or in bed i no he is safe
you take care and keep smiling my special friend
http://i10.photobucket.com/albums/a126/maesisaf/Friendship1.jpg
http://i10.photobucket.com/albums/a126/maesisaf/mess45.gif just to make you smile :D

[Diane]

http://i110.photobucket.com/albums/n91/OBXBandit/WIFE.jpg

<a href="http://photobucket.com/images/wife" target="_blank"><img src="http://i110.photobucket.com/albums/n91/OBXBandit/WIFE.jpg" border="0" alt="wife1 Pictures, Images and Photos"/></a>

http://i110.photobucket.com/albums/n91/OBXBandit/WIFE.jpg

Sometimes I feel more like this "babe" :D:D:D

[heather]

ditto my friend

http://i10.photobucket.com/albums/a126/maesisaf/ownlittleword.gif

[Margie2]

Hi Heather and Everyone!

I too am in my own little world...

Tony, me, Chris and the doctors, that's what our life has become. I keep hoping for a tiny little break and being able to laugh and enjoy a beautiful day together. Tony doesn't even want to go out.

Tony is retreating more and more into himself. For the most part all he wants to do is watch television. I'm not complaining. I just want to shake him and tell him I miss him so much. I do tell him in the nicest way possible but it seems to go over his head. He looks at me, says ok and then goes right on watching tv.

It seems that PD has robbed my husband of so many things including emotions of any kind. Or do you think that this is a safety mechanism that lets Tony not feel deeply? I am so confused and feel so alone. When I am here on our Forum, I don't feel so alone but I can't be here that often or that long. The loneliness is getting worse and worse.

I am not able to get out much as both my hubby and son do not want any aides to help out. It is just my son and me. So when my son isn't here, I am alone with Tony. Unless my daughter, who has a family of her own, can come and stay with Tony, I do not get out. Sometimes for four days in a row.

The above is not in any way a complaint. I realize I am at a down point at the moment but that doesn't make going through it any easier. All of you know what I am talking about, as you have experienced this in one way or another at some time. How did you cope with the loneliness? If you would care to share with me, I would welcome anything.

Thank you all for letting me write this way. I am so glad I've got all you dear, dear friends to help strengthen me at this time.

Please know you are in my prayers and always in my heart.

Margie

[heather]

Dear Margie
As you no i haven't been on for a time, mainly because i couldn't get into a positive mood, and being in a negative mood is not good, I didn't want post something we needed to work through first
As you no Jim only mimics P D so in some ways it's different, but as a carer it's the same my friend
Though i said we/ I was in a negative mood, I new we would and have got through it
I no what you mean "that his illness has robbed Tony of all emotions," please don't take this the wrong way, maybe it hasn't, he just doesn't no how to show it, Jim will cry when un happy, but also when he is happy, i have now learned to understand which is which, also my friend, please remember your loving husband is still there, don't look at the mask, look at the eyes, when Jim is naggy his eyes are dull, when happy, positive, they sparkle, like they ust to, just look my friend, in time you will find/notice it
Not working now is hard, as like you i find it lonely, if i didn't have my grandson Monday to Friday, i wouldn't have anyone to talk to except Taz and Major the parrot :D I don't get out, as Jim needs so much care, getting drinks, feed, and know antibiotics, makes it difficult for someone to come and sit.
The only time this few months we have been out, has been for hospital appointment, mainly due to the weather, as it takes me well over 10 minutes to get him and his chair around the back and into the van, and this wound infection we just can't get rid of :mad::mad:
we just celebrated [9 th August] our 40 th anniversary, so we have a lot more than most to be grateful, and i still have my health
I decided to take all my frustration out in the garden, and completely strip the conifer trees to the trunk, with lobbers, saw and pliers to cut the wire [ will do before after pictures as soon as i have finished it], also I'm looking on line for equipment to start using Jim's greenhouse through the winter, and grow plants,for next summer, as know i have a lot of space for more hanging baskets, and grow thinks to climb up the trunks, fingers crossed all will be revealed next summer
http://i10.photobucket.com/albums/a126/maesisaf/friends3f47.jpg

[Diane]

Margie, I feel so badly for you and Tony. Of course you are right that this disease robs us all of so much. My husband is often so lost in space that I start to (unconsciously) think he is intentionally going away from me. Then, he will say something so touching that I realize he would be 100% here with me if he only could.

Heather picked up on this when she picked up my quote: "He asked me not to be so angry and bitter about it." I know he still loves me and still wants me to have peace, even though it is his condition that is depriving me of peace. I am going to try to remember his words, whenever I feel the stress taking over. If I can stay less angry (at PD and what it is doing to him), I can try to enjoy my time with him, for what it is now. He is still the wonderful man I married, even though he is now often lost to his other-world reality. He gets stuck there, and I can try to either go to him there, or try hard to bring him here with me. We can still make contact by reaching out.

This all may not make sense to others who have not gone through what you and I have experienced. It might not make sense to you, either, but I think I have moved to a new level of acceptance of his limitations. He can't always be where I am, but I can always keep trying to reach him.

This was as much for me and where I am now as it is for you, dear Margie and Tony. Every day brings a different perspective and occasionally those new perspectives seem worth exploring, even holding onto.

Margie, I hope you and I can find peace and a measure of contentment. I do wish you could get out more often. It is the long isolation that damages us so much. Maybe you will have to make time for yourself, even though Tony does not want any stranger to come in. I now have a full-time "helper" for my husband, who drives him everywhere and keeps him safe while I work. He was very negative and resentful at first, asking me daily to fire her; but he now realizes that she is his link to the outside world. He depends on her.

You (the caregiver) really have to get away from PD sometimes, and that means getting away from the PD patient. You will probably find that you come back refreshed and ready to dance in the rain.

Diane

[heather]

Dear Diane
that says everything
reading this made me smile "This all may not make sense to others who have not gone through what you and I have experienced. It might not make sense to you, either, but I think I have moved to a new level of acceptance of his limitations. He can't always be where I am, but I can always keep trying to reach him.
this is so true, and until someone gets to that level of acceptance, will they find some peace of mind, it all takes time,, and each one of use is so different, but by staying positive, enjoying the good days, and working through the not so good days, means P D is the looser.

[kmorriseurich]

Hello Everyone,
I am new to this forum, my dad has pd dementia and we have him on 1200 mg of coQ 10, under the tongue supplements of B-12, Exelon (for Alzheimers) and yes, he too has a very hard time when under medicated or over, and when he is tired (oh my!) it is very frustrating

I need to pray for patience, as somedays I feel like beating my head up against the wall. Somedays he is fine. I am trying to figure out what works and what doesn't. But he has had it for 7 years (diagnosed) and so far, overall, I am grateful he has a lot left to him.

I want to be content with all life brings, because I do believe everyday is a gift.

Thanks all,
Katy

[Juanita Mullin]

Welcome, Katy,
We are happy to have you join us. I also am on 1200 mg of CoQ10. Mingling with the others on the forum who are experiencing the same kinds of things as you are will be helpful to you. It helps us to keep our perspective.
Juanita :) :)

[kmorriseurich]

Juanita,

Thank you. How lovely of you to welcome me. I do feel a bit lonely w/this disease and being a caregiver to dad. I have three little ones, 7, 5 and 2 years old. They take a lot of my energy and of course dad, who I just love, love, love does too.

I am glad to be doing something for me, and I think this forum is something for me, which it's about time I realize I need to take care of my needs too. Just talking things out with other folks in the same boat can be good therapy.

Thanks again,
Katy

[Diane]

Hi, Katy. I couldn't agree more about talking things out with others in the same boat. Everyone on here is so helpful and supportive, and generous about sharing knowledge and information gained either the hard way or by easier ways.

You are also right about taking care of Katy, too. You have to find the time and energy for that!

diane

[Juanita Mullin]

Hi Katy,
We are glad you came to this forum. It is a special place for
all who are on it. I find it so helpful and encouraging to be able to 'talk' to others that are in the same boat. It is refreshing to me and someway makes the way not quite so hard. Hope you find this that way too. And you do have your hands full with your three little ones and caring for your father. Come for a visit as often as you can.
Juanita :):)

[Patsy]

Hi Katy

http://i649.photobucket.com/albums/uu214/shortcut/welcome15.gif to the forum.

Looking after 3 children and caring for your dad is certainly not an easy task. I can understand your frustration, what you need is ME time, why not take a day off, have somebody look after your children and your dad, an do whatever makes you feel good.
I have PD for 10 yrs, I live alone, with medication I can do everything for myself. What meds is your dad taking.

http://i649.photobucket.com/albums/uu214/shortcut/thumbnailCANOWNIU-1.jpg http://i649.photobucket.com/albums/uu214/shortcut/thumbnailCAUGAPI0-1.jpg

http://i649.photobucket.com/albums/uu214/shortcut/ba445791b1ee6f2b693b2b12631c3b65.jpg

Patsy :

[Linnie]

My husband was just diagnosed with pd. We are pretty much in shock right now as this seemed to come out of the blue. Reading your posts about dementia really frightens me. Are all pd patients destined to have dementia? I am so broken hearted about this, my husband has always been so strong. He has been my rock since we were kids. I feel so selfish even thinking about myself. I have assured him I will always be here for him and always love him and both of those things are true but I am scared.

[Juanita Mullin]

Hi Linnie,
Welcome to the Parkinsons forum. It is normal to be in shock when you first receive the diagnosis of Parkinsons Disease but Parkinsons Disease does not kill anyone. The majority of people with PD do not ever have dementia. (I have forgotten what the percentage is.) Come to the forum with your questions and there will be someone to share with you who has experienced what your husband is going through and will share how they were able to cope. Come just to visit.
Juanita :):)

[Patsy]

Hi Linnie
Welcome to the forum. As Juanita said it is normal to be in shock when first diagnosed, I think it is "fear of the unknown".
I have PD for 10 yrs. (diagnosed), symptoms started 5yrs previous. With mediication i am living a normal life, maybe a little slower doing some things, but I can cope with that.
With PD the first thing is ACCEPTANCE it may take some time for your husband to accept it, when he does, then he can get on with life. "Live one day at a time and do not think of what tomorrow might bring"
Be POSITIVE it helps a lot, avoid stress and anxiety.
Do not be scared, just think of it as another phase in your husbands life, and by you been POSITIVE it will also help him.
Best Wishes,
Patsy :):):)

[Linnie]

Hi Juanita and Lonely, Thanks to both of you for responding. Your notes give me some hope. I know we will deal with this once the shock wears off but it is comforting to have someone to talk to who knows what we are facing. I am doing a lot of research but have been getting some conflicting results. Some info is reasuring but then I go to a different place and it will sound like doomsday. Hard to know exactly what to anticipate.
Thanks, Linnie

[Patsy]

Hi Linnie

Lianna (who started this forum) has written a book about PD. you can download and print it. It will answer an awful lot of your questions, and help you to understand PD.
I found it an enormous help.

Patsy :):):)

[Juanita Mullin]

Hi Linnie,
I agree with Patsy (Lonely) Lianna's book is very helpful. It will give you reasurrance.
Juanita :):)

[suzie Q]

Hi Katie welcome to the forum ,...i have had p.d for 6 years hope you enjoy being with us it is great to have others to share with

bye for now

sue

[suzie Q]

Hi Linnie

We all know how you feel ..it is just as hard for the partner.i have a great husband and family who are there for me.i couldn't do it without them .p.D affects each of us differently some may get dementia some not .we have to keep positive.but remember everyone is different what some have others will not.hope to hear more from you it is a great place the forum

all the best

sue

[notgivingup]

Diane from little town outside of Dallas.. I was wanting to know why your husband is accusing you of being untrue to him. I am wondering if its the disease that is causing him to act like he is or what have you found out. My husband was dignosised last week and I have cried everyday since.. Why does have to happen to such wonderful people and their famileis.. I just don't understand it..:confused:

[Diane]

Dear Notgivingup,

I am so sorry for your loss. The grief can be overwhelming. Please don't let it get the better of you. If the diagnosis is early, you probably have some really good years ahead of you. With the medications, my husband was able to continue working and driving and gardening and all his normal physical activities for about eight years. They call it the Honeymoon. If you get that, just enjoy it. Do all the things you love to do together. Most of the symptoms of PD have come on gradually and we have just slowed down over a long period of time. If I have learned anything, it is the advice of our friends on this forum: Don't dread what might come next. Just take each day as it comes and deal with changes in small bites. :)

As for the accusations that have caused us so much pain, please don't think this is going to happen to you. It seems to be rare and only happens when there is dementia, which only occurs is a minority of cases (I have read different percentages). In my husband's case, I believe that Mirapex contributed to the mental problems. He started having hallucinations and delusions. He "saw" and "heard" me doing and saying things that never happened. Even in the middle of the night, he would believe that another man was in the bed with us.

The doctor was reluctant to take him off Mirapex. He said the hallucinations might be worse with the Mirapex, but we were having so much success with the movement problems, he just didn't want to change it. Years later, a psychologist who was seeing my husband suggested to the doctor that the mental problems might be more devastating than the movement problems; he took him off the Mirapex a couple of months ago. My husband says the hallucinations have almost completely stopped. I don't know what he believes about me now; I haven't asked because he has stopped "acting out" and I am enjoying the respite.

I hope you can put this dread away from you and just do whatever you can with today's issues for the two of you. If you husband is in the early stages, try not to grieve about what he might lose later on. Try to think often about how much you both still have together.

Your question about why this has to happen to such wonderful people says it all. The unfairness, the denial, the hurt and anger we all feel when PD comes to live with us. When you visit this forum, you will meet so many people who have PD or live with someone who has it. As Suzie Q in Tasmania always says, "I have PD, but it doesn't have me."

Please stay in touch. Tell us more. Where are you from? How old is your husband? Does he have tremors? My husband doesn't have tremors; he has stiffness. We are always eager to hear what the doctors are telling the newer "Parkers" about what is in store. Has your husband's doctor talked of research for a cure?

Diane

[Juanita Mullin]

Diane, your advice is very good!! We are so happy for you that
your husband has been freed from the hallucinations.
Juanita :):)

[Mary]

Hi Linnie
I think everyone goes through same feelings as you when first diagnosed.I felt as though my legs had been chopped from under me when first told in 2001 (suffered from 1999)
Everyone is different and so are the effects and like you I read book after book and totally depressed myself- decided to put books away and deal with it on a daily basis.Now 10 years on like Lonely I can still do everything (albeit very slowly) and the progress is very slow.You and your husband stay positive exercise as much as possible and if prescribed medication does not agree there is always an alternative so request it
Best wishes
Mary

[Mary]

Hi Diana
So very glad you have good news about your husband. Re.Mirapexin I discusses increase in my medications with my Specialist at last visit and he said he would not increase dosage due to danger of hallucination. Does your husband take an alternative tablet to Mirapexin or was it just delted from his list?
Regards
Mary

[Diane]

Hi, Mary. Glad you are back. I don't know if you would call it and alternative, but I started giving him Parcopa again, to make up for the deletion of Mirapex. The neurologist agreed that was the right thing to do, and it does help with movement.
I have wondered if we could add back in a small dose of Mirapex; but so far we are just doing without it altogether.

Diane

[Mary]

Thanks Diana
Your reply is very well timed as I see my specialist tomorrow and will ask him about Parcopa.Many thanks and hope improvement in your husband continues and gets even better
Mary