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Showing content with the highest reputation since 08/19/2018 in all areas

  1. 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.
  2. 2 points
    my blessings are many! ps..new blog post today! https://ladpdjourney2.wordpress.com/ LAD
  3. 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?????
  4. 1 point
    Their website has lots of good stuff! LAD
  5. 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
  6. 1 point
    what is the status of the sub q pump put out by neroderm
  7. 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
  8. 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
  9. 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
  10. 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
  11. 1 point
    Hi guys.. Haven't posted in a little while been a bit down but in saying that jb always cheers me up...thank you jb you have your uses ... I love your photo LAD...take care friends, to be continued ... Em
  12. 1 point
    Happy Parkinson’s shopping!!!
  13. 1 point
    We do not delay Sinemet in our practice. We believe it is a safe and effective treatment. The doses and the intervals should be adjusted by someone with experience but waiting until 50 years old is not a rationale we have personally used in our practice. Hope that helps.
  14. 1 point
    I use Vimeo for video and Flkr for pictures. You upload them and then share them by copying the URL. Copy & paste the URL onto your post. Hope that’s understandable. LAD
  15. 1 point
    Good morning, yes it is. Cause it feels like fall. We have had nice rains lately. A sweater feels good in the evening now. It has been so hot. I hope that everyone has had a great summer and weekend just passed. Everyone should go back and reread the poem about laying hens by Peace. Mr Descoop wrote of his encounter with a bear.(different threads) Lots of talent online here I think. Lori, you said you were going tothe beach. Where is that where you are. With your blessings. Nice looking family. Papa Jack, you were at the last echo Beach. I made sure that you got picked up in the shuttle cause you are from Wisconsin and I like cheese. I knew that you would bringing cheese for the pot luck buffet. And besides. you were the designated surfboarder instructor and did an excellent job of it. And the cheese was excellent. Mrs, Pathfinder, I hope you are well. Any apple pie left in your freezer, Soon be time for new ones to go in. Linda, I hope you have a good day and everyone else too. Like Dianne, and my longtime friends Emma, and the mighty Marcia. Fist to the sky, we will win. jb
  16. 1 point
    Beau's Mom, I know exactly what it is. It was originally used at Boston Children's Hospital for diaper rash (hence forth the name Boston's Butt Cream). It consists of the following: Lidocaine 5% Ointment 1 oz. Nystatin Ointment 1 oz. Vitamin A & D Ointment 2 oz. Zinc Oxide Ointment 2 oz. If the Doctor writes a prescription for it, you can take it to the pharmacy and have them make it up for you. If you don't want to see a Doctor, all of the products are over the counter and you can make it up yourself. I hope this helps and please keep me posted.
  17. 1 point
    Not sure if this counts but I’m off to Indianapolis to get certified as a rock steady coach! It’s going to be an adventure! LAD
  18. 1 point
    Hey all. I just started C-L 25/100, 1/2 of a tab twice per day. Long story short, I'm 33, had a negative DatScan after my MDS saw parkinsonian symptoms, called it Dopa-Responsive Dystonia and put me on C-L. Even though I have some symptoms that have nothing to do with DRD, I have started taking the pills regardless. As long as I get relief, I don't care if he calls it Funky Britches Disease. Before the DatScan, other neurologists put me on Mirapex, which almost gave me a heart attack, and Requip, which made me gain about 7 lbs of fluid weight and develop OCD-like behavior. So after my second night of dosing (have started on just one half per night to adjust, given that I am really sensitive to medication), I just wanted to see if others had similar experiences. After that half of a pill, my balance is way better, stiffness way better, posture way better, no "puffing up" of shoulders and chest like I had just worked out, gait is much better, muscle spasms better, tremor is non-existent, and dexterity is much better (able to sort through papers, hold things without dropping them, etc). Just pooling a little drool and the right arm is still not swinging as much. It takes about an hour to kick in and wears off after about 4 to 5 hours. On the flip side of that, the first night, I really didn't feel many side effects. I was a little wired, like after having too much caffeine, but nothing too noticeable. Last night, and granted I have never done drugs in my life, but it was probably as close to "high" as I have ever felt and it made me uneasy. Everything really felt in sharp focus, but I also felt really antsy and really scatterbrained, like a thousand thoughts were running through my head like a highway. I was pretty decently shaky as well, with a sort of jumpy feeling in my chest. I had trouble getting to sleep last night and had a couple of "fainty" feelings. Did anyone else do this when they first started taking it? I'm also on Metaprolol 25 mg twice a day to control blood pressure, but I took it after the C-L should have worn off. I really don't want to get off this pill if I don't have to, as it has given me a glimpse of the old Adam for the first time in 2 years of slow, steady symptoms; I just don't want to be "Adam on Coke" either. Thanks for any insight!
  19. 1 point
    The initial diagnosis throws a person for a loop. It can be a bit of a roller coaster ride. Exercise is a must! There is a lot of help on this forum.
  20. 1 point
    Keep exercising.... look up neuroplasticity.... exercises for your brain with physical exercises... Exercise is like medicine to me... welcome...life's going to be different but it can still be great!!! LAD
  21. 1 point
    Welcome to the club that no one wants to be in. Feel free to ask any questions about meds, exercise or any of the other fun stuff that we get to deal with. Keep up the lifting and maybe throw in some biking or walking or running if the joints can take it.
  22. 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.
  23. 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
  24. 1 point
    Update on baby Liam....all is well. He was born on October 18th, a couple weeks early, but healthy! I did end up back in the hospital with a blood clot, but am home now enjoying my kiddos, and loving our new addition <3
  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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