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Showing content with the highest reputation on 03/23/2017 in all areas

  1. 1 point
    To share..... Awhile ago, I posted "Drifting..." to initiate a conversation regarding cognitive decline. The conversation morphed into a debate whether I was over dramatizing symptoms. Later I made an effort to create a topic for persons entering 3 or 4 stage PD to allow PWP to exchange support, information, and conversation during transition to advanced PD. That site morphed into discussion of what "stage" meant...and then off topic into personal exchanges. When I came to this forum 3 years ago, I was searching for accurate straight forward discussion of the reality of PD. I found great info, friendly people...i called it a "family.". However, as my needs changed, the "family" seemed to leave the dinner table and move on. Pragmatic people openly discuss and prepare for reality. Reality is offensive to some. For those who are interested in the topic and might learn from my experence, I want to report. Regardless of brain exercises, Q 10, cocanut oil and other supplements, daily exercise, devotion to service to others, personal motivation regimens, and removal of stressors, my cognition and reasoning have declined rapidly in the last six months. Readers doubt the assessment because I write proficiently. That reasoning is precisely why I choose to open the discussion again. Some people have cancer eating away their bodies, yet show few symptoms. The brain deteriorates quietly...behind closed doors. It steathily self destructs while outward signs remain normal. Only the individual is aware....and very lonely...with feelings of isolation and grief. We are experiencing the truth...our capacity is lessening.....we are "drifting" away from our former self.....yet have no one who relates. It is a time when an understanding friend is needed to assist the transition. However, few people are willing and brave enough to openly discuss the process. A partial list of my symptoms include short term memory loss, incorrect word substituion, cannot follow directions, short attention span, cannot multi task, cannot follow a narrative...such as a movie or article. I cannot defend or describe the degree of impairment. Cognitive assessments affirm symptoms. And they are life changing. I no longer feel I could safely live independently. However, I still drive while with DH and have no problem with reaction time or reasoning. And I have been able to travel alone by air. Anyone regardless of age or chronic disease will have these symptoms. However, i know there are other forum members further down the path of PD who will relate. They understand ...in spades....what I am describing. When symptoms become transparent...and the deficiencies are exposed to one's world...an entire NEW transition occurrs...begging the need of compassion and understanding. Yesterday, it took over 5 minutes to pay at a grocery store counter using a debit card. A call to DH, patient clerks and fellow customers, and finally tears before I could complete a familiar process. As I left, the following customer said to the clerk, "I understand, we all have mental problems." Ouch. The young carry out woman consoled me and asked if I was ok. "Its just that I remember when I was smart." At that point, I received a message intended just for me. In casual conversation to divert from the situation, I discovered she...at 20 years old...was going to hurry home to make Thanksgiving dinner for her parents...since her mother has mental illness and her father has one arm. She went on to say ahe would have to cook at the neighbors since she could not afford propane this month. Hmmmm...i needed to hear her story. People dont see our baggage...and we dont know what others are carrying. We all have to just survive and hope we leave this place in a better state then we found it...and we have become better people. I know this is long...I have gotten your point. I hope this is helpful to someone. NN
  2. 1 point
    Saw my MDS today. She said your mindset & attitude can have a huge ettect on your PD. I've been exercising, and building an excercise program in my area. I'm feeling good and helping others as best as I can. She looked at me and said "you're doing great - I can tell by your posture. Keep doing what you are doing". So stay positive and stay hopeful!
  3. 1 point
    From my observations and experience with DH who is in end stage, there is a time when his brain is no longer capable of the focus to want to do the things you would like him to do or be. Make sure that the problem is not depression. Medication can help depression. If it is the progression of the disease and the brain function is impaired, what is is. Loving him, taking care of his needs and making him feel secure is about all you can do. We all want things to be better and feel guilty we can't make things better. If all the medical cause boxes have been checked--what is is. If his brain were not impaired by Parkinson's, he would be eager to be an interactive grandfather, resume his painting, listen to his music. We can accept that someone doesn't play the piano anymore when arthritis has gnarled the hands in dysfunction and pain. We wouldn't force it. We can't see the plaques and shrinkage in the brain that make function difficult or impossible, but it is real.
  4. 1 point
    You might try a photo album with the names of persons and date taken (or age) in large lettering beneath the pictures. Include lots of old photos that may rekindle some old memories and some recent photos that might help him recognize newer family members. My Mom ( memory loss but not PD) liked looking through them on her own and enjoyed it when family members looked at the photos with her. Music, especially music that was popular during their youth. The difficult part of this is getting a play back system that your dad can operate. Might have more luck listening with him and you playing or operating it or perhaps asking a nurse to help him with it. mara177's suggestion of sing-a-longs and live music is excellent. You might inquire at your church or other groups (4-H clubs, scouts) if there would be someone wanting to do some community service. Does a family member play guitar or piano? When your dad visits your home you might want to have a family sing-a-long. (My Mom loved this) Or, perhaps as a birthday present you might want to cough up the money and pay a local group or musician(s) to perform at the health care facility. My Mom loved to just take a ride in the car. It didn't need to be any place in particular, just a chance to get out and look at the scenery - maybe a stop for ice cream or something to drink. It is difficult watching a loved one slowly disengage from life. I could be wrong but I think is was harder for me to watch than it was for my Mom to experience first hand. Many times she was content to just sit back and watch. She sometimes seemed happiest just sitting on the front porch listening to family or friends talk or for someone to just hold her hand.
  5. 1 point
    Well your father sounds like he is in about the same stage as my DH. My DH is now in a Health Care facility. He also does not have any interest in anything, with the progression of LBD he no longer can read but does enjoy looking at pictures. He also has had surgery for cataracts on both eyes and his last exam his eyes tested good but with the Parkinson's his perception of where things really are is off. No cure for that. I tired all the above he could not even begin to color in a book, puzzles confused him and he had no idea. They have man activities at the Center and he always says NO when they ask him if he would like to join in. He does enjoy music and they have every week two days where people come in and play and sing. He will join and listen to the music. It is very difficult, I have tried a simple game of Tic Tac Toe and he got all confused. I feel for you, his nuerologist said he is at the stage entering stage 5 and with LBD it will progress even furthur. Right now he knows me and everyone that comes to visit him he still knows. But decisions, etc no longer. I am still seeking things and trying things but pretty much in vain. Good luck and as I said I know where you are.
  6. 1 point
    Put together a list of treatments that may be available in the future... https://tmrwedition.com/2017/03/23/the-future-of-parkinsons-disease-therapies/ Anybody know any I missed?
  7. 1 point
    For all intents and purposes it's dead...and has been that way since Linda G. started passing off the chicanery of "Dr." Charles Stanley as the spoken word. If not quite dead yet then it's on life support. DaveN - Spoken like a true bible thumper - Every single one of the sentences in your most recent post is, demonstratively false, my friend. Those about me were also insulting. If you feel like preaching...why don't YOU go and start YOUR own blog/website. Or, we could just be friends and curtail opinions on which we'll never agree and discuss instead, the horror staring both of us in the face, PD. Roger
  8. 1 point
    Pardon me Dave. I have a right to my opinion as you or anyone does. Dont give me advice on protocal for this forum. I have read far worse on other threads here. Maybe the person responsible for this thread or repeat supporters share some responsibility for the content. I totally stand for what i have writte.
  9. 1 point
    pdmanaz, You are not the administrator of this forum, just a user like the rest of us. The administrators have stated that this area is unmoderated. If you don't like the content, then don't read it. It really is as simple as that. If something really offends you, report your objections to the forum administrators. If you want a moderated forum for PD, shell out some money and start your own. This forum is provided to us free of charge. Dave
  10. 1 point
    The ketogenic diet has also shown some benefit for PD. I try to stay in ketosis, but it is really difficult to stay away from chocolate and ice cream for a long time.
  11. 1 point
    NN good to see you. I'm lucky I haven't too many cognitive deficits. There is always "that word" in conversation that I can't pull out of my mind. I know what it is, I know what it means, I can almost see it, but I can't say it. Conversations slow to a halt as I continuously search for that next word. Lots of apathy. I've never been the best house keeper but now....I often live in a pig sty with no desire to clean it up. Marciaj, I understand the running into things that are right in front of you. My doorways move a lot as I walk through causing me to plant my body midway. I blame it on the walls and doorways because I have no idea how to explain my inability to miss them.
  12. 1 point
    I belong to this club...this stage...this challenge...this point re: PD as all of you describe above. Hard does not even begin to explain how difficult it is. I was so glad to hear that most if not all of you have someone to help you. This was posted in another health forum I belong to (for MPD) and is such a good reminder to remember as we walk the path we are on with PD, as well: 'God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardship as the pathway to peace; taking, as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to His will; that I may be reasonably happy in this life, and supremely happy with Him forever in the next.' (--Reinhold Niebuhr)
  13. 1 point
    NN keep posting. You're not alone. I had been told I didn't need to use Grammarly (web based program), but find it is helpful with words and sounding intelligent when I write. I was at the pharmacy and it was a new clerk, who asked "should I put the receipt in the bag". I swear she said "Michelle is in the back". She didn't have any accent at all, but my mind scrambled her words. Oh crap. Have you done a Neurological Assessment? Six hours talking and taking test with a neuropsychologist, explained it wasn't dementia, but just cognitive. Irony is visual puzzle solving gave me a 95th percentile, yet on a spoken story and recall I was 35th percentile. Finger manipulation was 12 percentile (dominant hand) and 5th percentile (non-dominant hand). So written email, or forums, I do excellent. Spoken words, OK. (When my wife is talking to me I need to turn off the TV). Button shirts... oh no. Post DBS I noticed I am moving better (less hesitation) and managed to button my own shirt (YA). Only time will tell, but time marches forward for all of us.