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Showing content with the highest reputation since 08/24/2018 in Posts

  1. 3 points
    If it’s not Pd, you are commenting on wrong forum.
  2. 3 points
    I'm glad to hear that a rehab psychologist helped you so much LAD. I had never heard of one until Dianne mentioned it. It's something I will keep in mind. Saturday I started to go emotionally down hill again but it helped tremendously to just sit on the porch and take a break. Thanks to Dianne's post, I knew I had to stop and honor the "revised" me and realize I can't expect myself to accomplish everything I could pre PD. jb-the absolute best part of your post was when you said your symptoms were being handled nicely with the dbs surgery and equipment. I'm so glad to hear that. AND that Dianne is a Parky Whisperer-no truer words have been spoken. She's so gracious to offer a word of encouragement to us all though her own trials have been many. Marcia Good to hear from you. Thanks for taking the time to retype your disappearing post. The combines will be out in the fields soon. If I see Christina the Paperbag Princess out there I'll tell her "Hi" from you jb. I would go looking before they harvest the corn but that'd be too scary. LOL I'm thinking of Steven King's Children of the Corn. I'm going to go lock my doors. Feet to the sky everyone! Good Night.
  3. 2 points
    Hi Gardner, It's to bad integrity has declined so much today in medicine..Money sure does play the major part today in our local parkinson care.I've been getting along well,havnt seen a PD doctor over a year.last call for my comtan it was declined as inappropriate.This is the way center of excellence operates today. My major concern are for those who lost control of their meds and are now in nursing homes.One wasn't doing so bad but got talked into and now is in a very perilous state.He Has been very confused yet also walks without support,never falls or has no difficulty swallowing his food or choking.Yet I was told by this family member that he is on a fast decline.I also know he is medicated to control his med caused confusion.he also has lost a lot of weight.he also is carried for by our local center of confusion clinic. I turned his case into a patient advocate and waiting if he will be helped.Others here are either unmedicated or over medicated.Most should not be in any nursimh home if they had compassionate care. Also no help from the parkinson foundation,national or local. One idea I have is starting a PD org run by us and hire our own doctors who have no connection withe corporate state of medicene. We could also hire our researchers also. Things will get better if everyone votes.
  4. 2 points
    Hi all. We've been driving around.. We drove through the states and then up to PEI. It is so beautiful. Everyone had tons of flowers. The discussion moved to people who can not cross that long bridge to get to PEI. One way was to distract yourself with other things or thoughts. But can't do that if you are the driver. Another way was to take a boat across. But you would be closer to the water . There was another way but I forget what it was. It's very intimidating. I labored over crossing a couple weeks before we went. The trip back I was reading something and was across before I knew it. I vote for distraction. I sat and gazed ahead making sure I didn't look at the water. I also thought why did I make such a big deal of it. Parkinsons is worse. That didn't make me feel better. My DH wanted to see both coasts so we went to the West Coast which is very long ways and Atlantic Coast. Marcia
  5. 2 points
    If they said it’s nothing, why don’t you move on? They do this for living so they probably know more than you
  6. 2 points
    He has used a shower chair before, further unsteadiness and we’ll go back to it. I replaced the bath mat, cut and fit two together to make a better pad for him to stand on. Much better, he had his confidence back today.
  7. 1 point
    Not every day is good but there is good in every day! Or something like that! Find your joy Dianne! LAD
  8. 1 point
    Wow Marcia, you went to both coasts? That would be lovely. I have not crossed that bridge to get to PEI. Last time there it was by ferry still. Is it still an island if I can drive to it,? Anyone else have a nice drive somewhere this summer? Today my grandson starts college in Ottawa. The "growup fast" turbocharger is activated now, Good days to everybody. jb
  9. 1 point
    I have had 3 surgeries since being dx with pd i found that my pd seemed to get worse after each one and it took longer to recover
  10. 1 point
    My "team" is a movement disorder specialist and I try to go as little as possible. I really don't like getting sucked into the medical industrial complex. Just another point of view - not meant to be critical of those who like going to the doctor. Gardener
  11. 1 point
    If I push myself physically then I get emotionally fatigued also. I did not tie the two together until I discussed it with Dianne on a different thread. I started paying attention and sure enough, when I let myself get physically worn down then I tend to have problems mentally, like tearing up over what should be a normal life situation. Gardener- you're not "giving up" just because you acknowledge that you can't do as much as you use to. I feel like such a stick in the mud when I have to tell my husband that I don't feel like going out or I can't continue to work on a project with him. I've accepted that none of my family will fully understand my fatigue issues because they can't "see" it. I believe only those with PD or similar health issues understand. What I don't understand is why we are fatigued but can't sleep?????
  12. 1 point
    Their website has lots of good stuff! LAD
  13. 1 point
    http://www.invigoratept.com/blog//a-letter-to-my-clients a good read LAD
  14. 1 point
    Good morning everyone. Saturday, love saturdays. last time posting, i signed off "fist to the sky" . Borrowed thAT from the paperbag princess. Where is she now, maybe wandering lost in a big old cornfield, in Iowa? hi Christina, Anyways, it is ironic, cause I am still working against that rotator cuff/ frozen shoulder problem that I seemed to bring home following the dbs surgery,. I can't raise my fist to the sky unless that arm is holding the rope threaded through the pulley that I have rigged up to exercise my arms. I could revise that fist to the sky to maybe foot to the sky but somehow "foot to the sky doesn't" seem quite as defiant. Whatcha think. ??? My parky symptoms are being handled quite nicely though by the dbs operation and equipment, Hiya Em, glad that you like to hear from me. How did your town fare in the contest of beautiful flowers and such. And the Pope is arriving there today? And Marcia,where did you drive to for your camping trip this time. ? Lady, so nice that you got to the beach. And where your son could join up with you, Peace, i think Parkinsons has us all at the edge. In my case I could always do what ever physically needed doing. not now. Tears, let me tell you this. Previous to going for my dbs operation, I attended a yoga class. A young man lead the session talked to us at the end as we assumed the cool down positions. Saying things as we relaxed, like "just think about any problems that you are having, any worries, just break them into little pieces, work on them bit by bit, forget the stuff you can't change, there, the problem is smaller already, now just shrug some more off and wiggle into a more comfortable situation, let that stress flow out of your hands and your mind" by that time I was not sobbing but my face was just wet with tears of relief as that young man talked me down from where I was. And I think that is our Dianne. She is a Parky whisperer. Listen to her words, cause she, despite all she has suffered, can soon cut through to what is important in life. I sincerely believe this Dianne. And so, My foot is to the sky in defiance against parkinsons. love peace and hugs to you all, jb
  15. 1 point
  16. 1 point
    Peace, I'm glad you found my comments helpful. I have felt that letting-go-of-tension you described. It's amazing how much stress we carry without even knowing it. Give yourself a big hug. It takes courage to feel feelings and accept changes. Dianne
  17. 1 point
    If there’s anyone out there in the York, Pa area that wants Rock Steady Boxing-look us up! I’m a Coach and a young onset person with Parkinson’s! ROCK STEADY BOXING YORK LAD
  18. 1 point
    Hi Kai, You are right - this has more to do with my own expectations than those of others. I wish I could take care of my grandson so he didn't have to go to daycare and I miss going on sister vacations. When I was diagnosed my younger sister, who has down syndrome, was living with me. She was like a daughter to me but I had to make the difficult decision to have her go with another family member. I don't have visible tremor (I do have internal tremor) so my most troubling symptoms are not apparent to others. Thank you for your thoughts and good luck on this journey. Gardener
  19. 1 point
    Hi Gardener, I was also diagnosed 7 years ago and struggle with fatigue. Unfortunately many times family members only see the visible symptoms like tremor and don't understand the cognitive and internal challenges we have. Although its good to push ourselves because that's sometimes the only way we know how far we can go, it has to be balanced with learning to listen to ourselves and and our bodies and take a slower pace when we need to. I understand the want to "power through" and not letting on to others that you can't do it, but it's a strategy that created a lot of stress for me. I found it was not so much my family's expectation of me, but more so my attempt to keep hanging on to what I used to be. If your relationship with your family is such that you think having a more formal discussion about it is the way to go, then tell them about how fatigue is a major symptom and that sometimes you won't be up for doing things. In my case I did it more casually when specific things to do came up, I'd just say "that sounds great but I'm feeling a wonky today and will pass but thanks for asking". After saying that a few times, they got it. Regardless of which way you go, have some self compassion for yourself and find the rhythm that's right for you now and don't feel like you have to keep up with others. Best to you. Kai
  20. 1 point
    Peace, I had similar experiences when I was pushing myself to be as competent and productive as I was before PD. My body couldn't keep up with my desire to maintain the self-image I'd spent my life perfecting. I was exhausted and tears flowed easily. Seeing a Rehab Psychologist at the local Parkinson's Center of Excellence helped me through the lengthy period of learning to love and accept the revised me. I know the grief process is difficult; it's also unavoidable. Blessings on your journey, Peace. Dianne
  21. 1 point
    Nice poem Superde. This is a great thread to go to for a pick me up. Thanks.
  22. 1 point
    https://ladpdjourney2.wordpress.com/ new post if anyone's interested LAD
  23. 1 point
    While it's true that many who have Parkinson's have lost their sense of smell, it is not a reliable indicator for the presence of the disease. You can have Parkinson's and still have your sense of smell. I do.
  24. 1 point
    Welcome, Chic's Dad. You might be describing apathy. You might also be describing depression. Depression is a non-motor symptom in more than 50% of PD cases. Changes in sleep patterns are a common symptom of depression. It would be worth discussing with your neurologist or MDS. Have you noticed whether your fluctuations in energy level are related to when you have just taken your medication or when it is nearly time for the next dose? These fluctuations in energy are normal in PD patients. Stress also can diminish the effectiveness of your meds and make all PD symptoms worse. Dianne
  25. 1 point
    Hi my name is Sandra and I was diagnosed with Parkinsons at age 32. I started with symptoms 2 years prior to that (age 30). So I've had it since I was 30. Now I am 50 and during the past 20 years I had 2 miracles... my two healthy babies! My son who is now 15 years old and my daughter who is 10. They keep me going and have kept me alive, I don't have time to be sick. And yes I took Sinemet during the entire time I was pregnant, with both. SO DO NOT WEEN yourself off of NOTHING GIRL. I understand it not being comfortable and pregnancy is uncomfortable enough without having to suffer your parkinsons symptoms also! I am not a doctor but... I am a parkinsons patient with 2 healthy awesome children. If you would like to chat more I can give you my telephone number. I am not sure how to navigate around this forum I just registered to answer your question. So I will have to make myself more familiar with this site. God Bless you and your baby.
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