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shirleyengebretsen

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Everything posted by shirleyengebretsen

  1. Removlel of thread

    I agree whole heartedly. Where is our freedom of speech?
  2. Treating Dystonia

    I have not experienced this, but i know there are other medications to be tried if that one does not work for you. Some people find the Neuro patch helpful Shirley
  3. Still In Limbo....No Dx

    Serenity now, I would find a neurologist that specializes in Movement disorders or PD. There are medications that have seem to slow the progression of the disease doe some patients, if caught early enough. It is certainly worth the effort. Shirley
  4. SSSSSSSLLLLLLOOOOOOOOOOWWWWWWW

    I think you are correct. Your internet connection may be the issue.
  5. Single with PD

    I see seminars for care givers and spouses, but nothing for people single and have PD. It is sometimes scary to think of the future without someone dedicated to walk through the journey with you. I am lucky because I have family and good friends, but I cannot plan to move in with them if things go poorly. I do have a strong faith and know God will be with me whatever happens. I just wondered if anyone else is facing this alone. Shirley
  6. Losing my Voice

    I learned at a seminar in Redding that there is a way to protect our voice. Dr. Shelly Von Berg a speech therapist and professor at Chico State University and on the Board of the Parkinsons Voice Project was the speaker. In summary, our vocal chords are muscles and need daily exercise to remain healthy especially forvPersons with Parkinsons. She specializes in Parkinsons disease. She has been my therapist for a year now. I can tell you, this is saving my voice. The sooner you start the Loud crowd or Parkinson's voice project, the better. You may not gain back what you have already lost,but you can keep from loosing more. The training book is free from the Parkinsons voice project. It is extremely helpful to have a speech therapist trained in Parkinson's. It makes a huge difference.
  7. A thread for anyone interested in topics of Christian faith--all invited.

    I am thankful for our shepherd who will never forsake us, today I experienced a little rougher road, so I opened His book to Psalm 150 and meditated on the reasons to praise Gof. It was nit long till my heart was lifted. Shirley
  8. Single with PD

    Lonnie, I enjoyed your comments on interdependence.
  9. Essential tremor and DBS

    I had DBS surgery a year ago. I had it done in a MRI machine, because I could be unconscious during the surgery. That meant surgery not 2 parts. First in insertion of the tubs in the brain j. Then a return in a month to have the battery installed. I was out of the hospital the next day in both surgeries.
  10. I need to manage memory problems

    I over dosed on C/L once and had to go to the hospital.. They gave me several shots of Benadryl and told me if that ever happens again to take a couple of those pills. Thankfully it has not happened again. I use a phone alarm system to remind me to take my meds.
  11. Considering Rytary

    I have been on Rytary since last fall. I take it three times throughout the day. It lasts 4 hours but begins to wear off the 3rd hour. I am on the 95 blue and white pill. I found Rytary very helpful. I am not as tired as I was on the 25/100 IR. However, recently I have been experiencing higher levels of anxiety when I am about an hour away from the next dose. I take a half a 25/100 pill to boost my system until the fourth hour and that is helping stop the anxiety. I have two concerns with Rytary. The first is the cost. I could not get our local pharmacies to accept the free dosage. My cost through express scripts is $112 every 90 days. That is not bad, but combined with my other medications it is becoming more difficult to keep up. The second concern is my anxiety levels have greatly increased. I read one of the possible side affects of Rytary is anxiety. But I also know PD causes anxiety as well. I am thinking of going back to the 25/100. By-the-way I also have DBS and wear the Neuro patch. Any one have suggestion?
  12. Rock Steady Boxing = ZERO Progression

    Thank you for posting this.
  13. Non motor manifestations

    I had noticed a drastic change in my ability to smell things and when I did smell something it was not accurate. This happened about ten years before diagnosis. I went through some tests to fine=d out if I had a sinus infection and they could never find out what the problem was. So my first symptom was loss of smell. Recently, I am experiencing trouble eating without coughing. I often swallow in a way that causes a series of coughing episodes. I have learned this summer at a seminar on Parkinson's disease, that it is because the muscles in the back of the trought are stiffening. They told us to use straws to help the swallowing process and to avoid ltilting you head back whenn you drink, like you do when you drink out of a water bottle.
  14. Single with PD

    There is an American book I would like to recommend to you Natasha. It is written by a psychologist and is tittle, "Never Go Back." It teaches principles of decision making that can help protect against repeated mistakes. It does not make decisions for you. It only gives things to look for when someone is claiming they have changed, be it a spouse, a boss or a friend. You might enjoy the read. Shirley
  15. I can't knit anymore!

    My friend just said there are knitting machines that are easy to feed in the yarn.
  16. Single with PD

    Roger
  17. Single with PD

    Rogerstar1, Beau's Mom and Lu states, It was so encouraging to hear from other singles. You are the first ones I have talked to. It was good to read your suggestions and support. Roger, I admire your strength to make such a difficult decision. I cannot imagine the cost to you and your friend. It encourages me to stay strong. Beau's Mom, I too became divorced after diagnosis. It was extremely painful. I don't know if it was your choice or your partner's, but either way divorce devastating. Thank you for the suggestions. I will eventually need to research the in home services. Though I hope that is awhile before it is necessary. Lu states, It can seem unfair that friends do not understand. I am afraid our culture runs on busy-ness. We can easily feel abandoned when we are forced into the slow lane. The fact that they are still friends tells me they like you. I don't think they would come around if they did not care. Feel free to send a chat my way as we both understand the life with PD. .
  18. 6 Days to go

    I am not a motorcyclist, but I like my bicycle. There was some talk in the first of this topic about therapy. I attended an all day seminar on PD last summer and learned about loud speech therapy. I learned that with voice exercise we do not have to loose our volume. I have difficulty in the off times with forming words because both my tongue becomes stiff and my upper lip is feels tight. The therapist who specializes in patients with PD gave me that hope. If you wait too long, there is a limit to how much volume you can retrieve, but you can maintain from the point you start. This was great news for me. My aunt had almost become completely silent with her PD. I was told the same is true for all of our muscles. They are affected by PD, but not necessarily destroyed by PD. Patients with MD or MS are not as lucky. So, I am exercising to maintain as much strength as I can. Instead of a physical therapist, you might enjoy yoga. It both relaxes you and stretches those muscles. Planks build muscle tone better than pushup and planks don't harm you back.
  19. Sinement Question

    Doc told me that Sinemet uses the same enzyme as protein, so you will not get the full affect of the meds. He suggests a half hour before you take meds or 40 minutes after you eat. I do notice a difference. I agree with having your heart checked. We can blame PD when we may have other health issues.
  20. I can't knit anymore!

    I had no patients for knitting, but admired people who knit sweaters and clothing. I used to crochet, but I cannot crochet anymore. A doctor who was unfamiliar with PD operated on my hand and destroyed it, so crocheting is out the window. I still grieve over it at times. So I can relate to your frustration. However, I have found fulfillment in trying other art forms. It will sound funny, but I get river rocks and spray pain them with my good hand. My first project was a small river garden in my back yard. I made with laying the rocks to look like flowing water. I placed small glass ducks by the river, a squirrel and put a couple of glass fish in with the blue painted rocks. People enjoy walking back there when they come to visit. I saw a photographic art display at he hospital by a man with PD. He let his shaking blur the pictures and sold his photography for $100s. Try exploring with paints, color pencils, or even writing. You have a way of ptting things that people relate too, You wrote, "while the rest of life was happening" and "my brain is leaking out" these are very descriptive emotional expressions that carry great meaning. I have a feeling you are a natural poet. (poetry no longer has to rhym.) You have much more to offer. Please don't let the beauty of who you are disappear in your limitations. We still see your worth. I hope you will too. Shirley
  21. Post DBS, immediately following surgery.

    I too an concerned. I had no negative symptoms after surgery. In fact, I was out touring San Francisco the next day. I was exhausted that night, granted, but over all was doing great. I know we are all different and some take longer to recover. There is a natural swelling in the brain after the surgery. The cause of his negative symptoms could be as simple as that and his function might improve after the swelling goes down.
  22. Somethings Different

    We often underestimate our importance to others. When we share our struggles and others reach out, we are not the only ones who are helped. Silent readers gain encouragement. Your going to lunch with the couple, I am sure will encourage them. I too have experienced mental changes. So far they are not too troubling. I notice a slight paranoia that was not there before, but I am able to reason it away. I was thankful to learn the difference between paranoid schizophrenia and paranoia that comes from having Parkinson's. The patient with Parkinson's can be reasoned out of the paranoia and understand the experience is not reality, while the other diagnosis is much more difficult to overcome. Nonetheless it is an unpleasant part of this disease for some of us.
  23. A thread for anyone interested in topics of Christian faith--all invited.

    These were written over a year ago.. What has become of you all?
  24. New member introduction

    Stress definitely brings out more severe symptoms. The good news is the worsening symptoms can reverse to your previous level, if the stressful situation is resolved or removed. I was diagnosed in 2011.
  25. What was your threshold for choosing DBS?

    I was diagnosed in 2011. My PD is very aggressive, so by 2013 I was having trouble walking. My left foot turned in causing me to trip on the back of my right foot. I was taking 1 1/2 pills every 2 1/2 hours and still having difficulty only finding relief for aiout 45 minutes. My Doc suggested DBS. I had it done in Sept of 214 and am walking with only a slight limp and taking 1 pill every 4 hours. I am so grateful. If any one is contemplating having it done, may I suggest San Francisco movement center at UCSF? They have developed a way to do it while you are completely asleep. You do not have to be awake during any part of the procedure. It is great.
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