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

  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
    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.
  3. 2 points
    my blessings are many! ps..new blog post today! https://ladpdjourney2.wordpress.com/ LAD
  4. 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?????
  5. 1 point
    http://www.invigoratept.com/blog//a-letter-to-my-clients a good read LAD
  6. 1 point
    It probably doesn't matter. In my practice we use immediate release.
  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
    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
  9. 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
  10. 1 point
    I have been getting Botox injections for about a year now for foot dystonia. The results are different for everyone. The Botox helped some of the foot dystonia but not 100%. I would recommend it as some relief is better than none. My MDS coded it focal dystonia. My insurance paid for it after I met my deductible. Ask your MDS about a rebate check from the Botox company. You submit claim along with EOB insurance sheet online. You are able to do this for the amount your insurance does not pay. I have received two checks from the Botox company. I have now met my deductible so I can no longer apply for a rebate check. !-800-44-BOTOX The Botox Company is Allergan.
  11. 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
  12. 1 point
    Nice poem Superde. This is a great thread to go to for a pick me up. Thanks.
  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
    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.
  16. 1 point
    Last night i wanted to go fishing.many of my fishing friends have given up the sport.old age loll Well i went alone and caught three nice big salmon Moral of the story true fishermen never grow old including Parkies Lol Have a nice John Ps if ypu live near me i have lots of good salmon
  17. 1 point
    Dealtsea, I am not aware of any shortage of Rytary. By the sounds of the text message it appears that the pharmacy is ordering the medication through it's warehouse which usually takes about a week to arrive. I don't want to say it is a bad pharmacy, but I would make sure to talk to them and have them assure me that this issue will not happen again. Many pharmacies have an electronic ordering system which usually takes a month or two to catch up with the number of people on a certain medication. I usually recommend that after you have a conversation with the pharmacy that they are given one more chance to rectify the situation and gain my trust. If they fail to do this there are many other choices out available. I hope this helps and please keep me posted.
  18. 1 point
    So on my trip, I found the opportunity to educate a TSA agent. Going through security, my meds got separated from my bin...panic ensues...followed by tremors while in the body scanner. Upon exiting the scanner the agent says “ you need to stand still next time.” I laughed and reply “sorry not going to happen I have PD” after some awkward silence she replied “you never have to apologize for that” it all worked out and I’m guessing she’ll never say that again 😊
  19. 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
  20. 1 point
    Ludy, Let me share some words of wisdom from fellow forum member Hercules957: At first, it is overwhelming to say the least. You need to go through the grieving process leading to acceptance. Once in the acceptance place, you will encounter new symptoms that will force you to go through the process again. We can only find peace in the acceptance mode. Living in denial, anger, depression or compromise is more difficult. I deal with PD by 1. keeping a positive attitude, 2. looking for the right medication cocktail, 3. exercising, 4. resting, 5. eliminating stress, 6. staying warm. Having PD is like a new life you have not chosen. Forget the old one, or at least detach from it otherwise nostalgia will lead to frustration. Try not to look too far in the future as this will lead to anxiety, causing stress which will exacerbate symptoms. Be grateful for the positive aspects present in your new life. It is a marathon, save energy, don't rush. Be systematic and analytical. You will become the PD expert for yourself. Don't compare too much to others as we are all affected differently and progression is different for all. The future has too many unknowns, stay in the present as much as possible.
  21. 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
  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
    The more you read and research the more you will learn that Apathy in Parkinson's is the most widely miss understood and un-reasearch in PD patients. The best thing I have found is to make sure I stay consistent in my daily activities and force my self to get up an get moving. Once I finally get up and move and start to do something then it just get easier to keep moving. I do need one day a week to just sit around and do very little. You will see that a lot of people on here have similar problems getting motivated. Welcome to the forum and keep posting. Blessings Adam
  25. 1 point
    Another update.. my daughter continues to amaze me. She is a very healthy 3 1/2 month old. She surprises all of us with her strength and determination. She is very active...rolling over, inquisitive, holding toys and quite opinionated! My symptoms I developed during pregnancy have not improved. It appears they are permanent. As she gains weight I worry about safely picking her up. I have adapted a halo swaddle blanket with a sling type strap to give me peace of mind when lifting her. I can manipulate it with one hand. My left side continues to lose movement and my left arm/hand is progressively weaker. I still am able through creative techniques to provide any and all the care my daughter needs...yes I ask for help when I need it. I did the same with my older children prior to this disease. I will never regret the birth of my daughter. Everytime she smiles at me it melts my heart. I pray everyday I get to see this beautiful baby girl grow up. My children are what keeps me strong and fighting. bless u all.