Thank You
 

As you may or may not recall, I joined this forum about two months ago...as a carepartner to my pwp. At the time, I mentioned that I also belong to a caregivers' forum, but I was intent on learning more...becoming more educated from the perspective of those who are afflicted with PD so that I could be the best possible carepartner to my pwp. I have learned so much, here, i.e., related to the physical/medical aspects of this disease, but most importantly, I have learned something about human strength and courge. As I read your posts, I am constantly amazed and in awe of your ever-present strength and courage...your will to do what you must do to continue your very difficult journeys. Also so evident is the very caring support that is present among you. I am just so grateful to have been guided to this place, and I want you to know that you have provided...and continue to provide something that I might otherwise not have found...and that is HOPE...hope that my pwp and I will be able to continue our journey with the same spirit of hope that I have found here. I firmly believe that absent this element, the struggle with this demon disease might, indeed, have become "hopeless"...and so, I thank you, especially for infusing both of us (I share your messages with my pwp ) with a hope that will sustain us and enable us to be strong and courageous...just as you have so beautifully manifested your strength and courage.

Blessings to all...
Therese

thank you
 

therese, statements like yours give us energy to carry on. we all know it's much more fun to try to help or change something. And never been so important to work synergistically with other stakeholders, including industry. We are understanding each other much better I think - the orgs. It's like their job is to do what is true and right, even though it steps on toes, and oh the politics.

It's not been better I don't think, for as l ong as i've been paying attention. Please orrrect me someone if mistaken.

Synergy, connections....
paula

Therese..I certainly can relate to your gratitude.. I have gotten more than I could have ever imagined from being a part of this community..I was a mess when I got here, and found the same internal hope that you have..I am happy to hear that you have had the same experience..This community provides an atmosphere of healing

Thank You
 

I am adding my thanks to all of you too. I truly do not know what I would do without this site. I only wish my husband who is the PWP would become involved. He could sure use something. But he is in some world of his own and I can't seem to reach him. If it were not for all of you, I don't know what I'd do. You inspire me to try to keep pushing him to help himself a bit. I don't know if that's fair of me to ask him or even if it's possible. It just seems that all of you are victorious each day no matter what,and you do everything you can to enjoy life and stay hopeful and you have great love of family. I admire all of you so much because you keep on keepin' on. I seem to have lost my best friend and I don't know if I can ever get him back. Well this is certainly not thank you anymore it's turned into a crying jag. Not going there today. Best to all of you today and every day, Maureen

Take care of yourself
 

Dear Maureen

Along with taking care of your husband you have to take care of yourself. It's not good to be thinking only of him. Set some time aside for doing something you enjoy - curl up with a book for an hour, go for a walk, etc.


Dottie

Agree...all of the above.

In, 1999 I found BrainTalk and through the board met in person my first PWP, Paula. Shortly after that I met the Yahoo Dumpster Gang. And, life as a PWP grew from there. (I am also my own carepartner. Like being a single parent is both mother and father so many times.)

I could ask, "Where would I be today if I had not found BrainTalk?" Doesn't matter now, I did and what I found in the early years was what has already been spoken of above.

About two years ago...don't remember for sure...two members of this board, who have been friends of mine for many years, were preparing to have neck fusion surgery. When I send a greeting card to someone I can spend a hour searching the local Hallmark shop racks for the RIGHT card. Here is the card I sent to them. Yep, I typed it up and save it...that message was to strong to me...and to me it is also a message about this board.

The "wind" of course is PD.

Attachment 1388 THE OAK TREE

A mighty wind blew night and day.
It stole the oak tree's leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
"How can you still be standing, Oak?"

The oak tree said, "I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway,
But I have roots stretched in the earth,
Growing stronger since my birth.

"You'll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn't sure
Of just how much I could endure,
but now I've found, with thanks to you,
I'm stronger than I ever knew.'

The balance of the card says: I know you can get through this. You're strong and are surrounded by people who care.

Maureen...
 

I feel for you so much.I have always advocated with my own situation,that it is far harder for the carer than it is for the sufferer sometimes.Indeed I am glad it is this way round in my own family.My time and energy is spent in getting on with coping strategies,therefore I am busy doing that.The onlookers have such a hard task,both physically and emotionally.You must have days when your support,your suggestions,your encouragement seems to be falling on deaf ears and the loss to you is as great as the loss to your husband.I don`t know how long he has been diagnosed but until he comes to terms with this cruel disease,then for a while,things might be like this.

I try to see events as "seasons." They change and ebb and flow,and I am sure this is purely a transitionary period.There will be improvement.
But meanwhile,someone so very rightly said,you owe it to yourself to have YOU time...to have a friend you let out to...to have a time when you vent your fears and anger...to not give up the stuff you enjoy.
I think guilt plays a sinister hand in these situation s.
I felt guilty for a while that I had brought this on to my family.Guilt from my family that I had got this and not they.
It is indeed a testing time...but with support,not least from here,you will make it through to brighter days.

Thinking of you.
Steff
x

Thank you
 

Dottie & Carolyn,
You guys are great. And Carolyn, the words you sent from the cards leave one speechless, they are so beautiful. I am going to print it and show Rich. Thanks, again, Maureen

Thanks, Steffi
 

I didn't see your response when I replied to Dottie & Carolyn. Thank you, too Steffi, I always love reading your posts. I can only hope that what you say is true and that this will pass. Rich was diagnosed in June of '05. He never told me that his right arm and hand were growing weaker. His leg did drag, but he thought it was because he was always in pain from his back because his prostate was always bothering him. In October '03 he had a bad heart attack and I sometimes try to think if he was dragging his leg before or what. I guess it's a moot issue now anyway. I know that while he was weaker physically, he did not change mentally until August '05. And it was sudden. He thought our phones were tapped, he was followed, that his company had put people in the house down the road from us to watch him. My mother had a stroke the early part of August that year and he even went to the hospital with her. The following week he was really sick with another prostate infection and he called in sick. Wouldn't you know it, the hospital wanted my mother discharged to a nursing home at that same time. I did not want her to be taken in the ambulance without me because she is almost blind and 93. So Rich drove me in to the hospital so I could accompany her. I would never have asked him if I thought it would impair him in any way. The next day he went to the doctor to see about his prostate infection and swears that a car from his company was on our street watching him. That was the beginning of the end. I have bored everyone enough so I will end this saga now. I had only hoped that after almost two years and psychiatrists, neurologists, etc. that he would be in a better place mentally. In some ways he is because at least he's not chanting out loud anymore. Now he only remains on the sofa, silent. He has tried to return to work, but it's been so very hard for him and let's face it, they no longer want him there. Can't say I blame them. He will be there for almost 28 years in August and if you retire before 30 years, they penalize you tremendously. But at this juncture, there may be no other choice left. He is also very fatigued and that doesn't help. I try to encourage him to exercise for his heart and his Parkinson's, but every response from him is the same - - I will, tomorrow.
Two weeks ago, I took him to a different neurologist who was recommended to us. We really liked him. So he started to question Rich about why he was on antipsychotic drugs, etc. When Rich told him about his paranoia regading his job, the dr. said that was probably unlikely - - they would not be spending much money following him around. However, when the dr. asked Rich who he worked for and Rich told him, the dr. said, oh, maybe you'r right. They have cameras and are involved with homeland security, etc. so they probably were watching you. Can you believe this!!! I think he was trying to be a little funny; however, I am married to Mr. PARANOID!!!
Anyway, I have taken us off the subject of this thread - - the simple thank you that we all need once in a while to know we are appreciated and cared for. And I want all of you to know that I truly appreciate everyone of you and I do care that the best is yet ahead for everyone who is part of this fabulous community.
Many, many thanks.

P.S., Steffi, I wish I could meet your son. He is a chip off the old (no, not you) block.


Maureen

Maureen, I have to ask...do you/your husband see a Movement Disorder Specialist neurologist or a general practice neurologist?

Maureen?
 

Such a difficult position for you to be in and I can only offer my heartfelt empathy on what must be an extremely frustrating and saddening scenario.
You come over as a strong person and a loving one,so please do not let your own life totally diminish under the weight of all this.
Use this place as a sanctuary,and vent all you like.We will all try to support you and of course your husband if he decides to visit here.
Have you tried eeking out the upbeat posts...ones that are not particularly too informative about the future...to show him
[I am not negating the serious posts...just that he may not feel ready to know the full facts of pd yet]
Keep posting Maureen.Wish there were an easier path for you.
x

Carolyn
 

Yes, I don't want to mention the doctor's name here, but he advertises himself as the Parkisnon's Dr. He is supposed to be a movement disorder specialist. We also met with Andrew Fagin at LIJ-North Shore Hospital on Long Island and he is also supposed to be an excellent neuro and Parkinson's expert. At that time, his practice was involved in a clinical study for depression and wanted Rich to participate. However, they called back to say he would not be eligible because he had already been on antidepressants, etc. From there I took him to a noted psychiatrist to help treat the paranoia and that did seem to improve. But he had me fooled a bit and he still believes some things that are totally ridiculous. We were recommended to another neuorolgist on Long Island and it appears to be a very large practice. Several people who have Parkinson's recommended this doctor. So we went on May 16th. He said Rich was undermedicated for his Parkinson's and increased the Sinemet to twice daily and at the third week, 3X. He ordered blood work for thyroid, B12 and testosterone. The neurologist did say that his executive function is affected and that's pretty obvious. He also wants a sleep study done because Rich's airway is so small. Rich had that test done years ago and we already know he has that problem. He was supposed to wear this crazy looking thing at night, of course, he said he couldn't do it and that was that. I'm sure, too, that his heart attack in '03 also monkeyed things up a bit. It was a significant heart attack and they were going to airlift him to a hospital that could treat him as the hospital we were at lacked that capacity. Who knows.

I have also taken him to a doctor who practices western medicine as well as Ayurvedic. She teaches at Columbia Presbyterian and she is lovely. She recommended a doctor better trained in Ayurvedic medicine to Rich but he is tired of so many doctors and would not go.

He returned to work April 27 and it has been awful. He is going to have to finally retire because he doesn't make it there most days and they are understandably annoyed with him. He sleeps all day and cannot function at all. I now have to start looking for another psychiatrist for him again because the dr. we did go to was practically in NYC and that is a long trip all the time. I'm exhausted from the whole thing to be honest.

I have to go to work myself and I am a mess there as well, because it's difficult to focus while this continues. My mother is in a nursing home and I try to get there every week and I have my soon to be 95 year old aunt who stays with me most of the time. She is no bother, acutally, a pleasure to have around. But she is going down too and it's just that one more thing.

The reason I have been writing about this is in the hope that someone might know or recognize some of these symptoms and give me some guidance or suggestions. I don't want to bring everyone else down and I look like I'm having my own little pity party. I like being happy and having a good time. This is not stuff I'm good at. I'm only hoping to restore some sense of normalcy back into our lives and I am not getting anywhere near that goal.

Carolyn, thanks for everything you bring to this community. Without you and everyone else here I would be in a padded room right now.

Take care, Maureen