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smalltownguy

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smalltownguy last won the day on June 30 2016

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About smalltownguy

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    Advanced Member
  • Birthday 02/03/1956

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    northwest Ohio
  1. Bible Verses....

    This is a great topic/thread! Thanks for the great posts! A couple of my favorite verses: Isaiah 26:3-4 You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock. To help me keep my mind on God there are time it's important for me to read through and pray the 18 attributes of God defined by A.W. Tozer. Here's a web link to them: https://www.allaboutgod.com/attributes-of-god.htm If I can stay focused on the REALITY of our great God, and his promises through Christ joy is possible. Another great source of encouragement is to listen to worship music on Youtube as much as possible. I"ve "saved" something like 200 songs in a list that normally begins my every day.
  2. Apathy - any suggestions

    A lot of helpful, great posts! Some things that have been helpful for me: Physical exercise has been very important in shifting my mood and helping to eliminate/reduce brain fog. The earlier in the day I exercise the better. Also (as others have said) I have to adjust my expectations...there is no way I can do what I used to, physically or cognitively. In addition I have discovered my physical diet impacts me physically, mood and cognitively. Sugar, especially, is a killer for me. Listening to encouraging music is also impactful for me.
  3. heavy legs

    When you say the legs are heavy....does it matter where the person is trying to walk? "Freezing of gait" is something I face. Freezing often happens worse in a narrow area, or sometimes dark. Crazy, for example, I can go up and down stairs with no problem, get to the bottom of the stairs in a doorway and the legs freeze. Is this the type of "heavy legs" or something else?
  4. PROTEIN WITH RYTARY

    Sinemet IR is "immediate release" and Sinemet CR is "controlled release. They have been around for some time. IR was (in my case) good for about 2 hrs before "turning off". CR was good, in some cases for 4 hrs. Rytary is a different product only available (in the USA) for I think that last 1-2 years. Fortunately I was able to get a subsidy from the manufacturer. Still expensive. I've getting 6 hours, elimating high/lows out of Rytary.
  5. PROTEIN WITH RYTARY

    Thanks, Dave! Glad things are working well for you.
  6. PROTEIN WITH RYTARY

    Thanks, very much, for the helpful input stump. Have you noticed any difference between animal or non-animal protein?
  7. Early PD and vigorous exercise

    Rock Steady Boxing is an awesome program. Would leave with sweat dripping off. Stenosis in the back put an end to that. Sounds crazy but riding bike is strengthening my back and great exercise. Can't wait until warm weather again.
  8. lost sheep

    Crazy, but I had the same problem logging in for a long time.
  9. PROTEIN WITH RYTARY

    I have been on time-release sinemet (Rytary) now for about 6 months. It's working excellent me. For a long time I"ve noted that my diet has huge impact on my symptoms so I'm seeing if anyone else has much experience with Rytary and diet factors. Let me give some background on my case of PD then further explain my diet question. BACKGROUND - PD: i was.diagnosed March 2003, Symptoms have been slowness of movement, rigidity, dystonia, fatigue and brain fog. By 2011 I had bad dystonia and dyskinesia. Further complicating things I had a nightmare reaction to a dopamine agonist,. Requip (personality change, crazy impulsiveness). I had DBS (first side Oct 2011, second side Jan 2014)...which reduced my meds by close to 70%. Huge benefit to get much of the meds out of my system. I had an MRI for my lower back 6 months ago and both stimulators were turned off for the procedure for 45 minutes. Unbelievable.....I could hardly move a muscle in my entire body. I've been told by my programmer at the Cleveland Clinic that there's only one other person in their system that gets as rigid as me when turned off. About 2 years ago my lower back started hurting from stenosis. This helped prompt "freezing of gait". The worse the pain, more problem walking. Have had radiofrequency ablation done twice, still waiting for a good result from second time. Freezing is my most troublesome symptom currently. BENEFIT OF RYTARY: Going to Rytary has virtualiy eliminated "offs" for me and exteneded time between doses. My current med schedule is: 6 am 1 3/4 -Rytary 23.75 mg / 95 mg 1 amantadine 100 mg (Started with 2 Rytary, gave me dyskinesia, use gelcap to reduce to 1 3/4 and works great. Not hard to do). 12 noon 1-Rytary 23.75 mg / 95 mg 1- amantadine 100 mg 6 pm 1-Rytary 23.75 mg / 95 mg 1 - Azilect 1 mg 10-11pm 1-Rytary 23.75 mg / 95 mg MY EXPERIENCE WITH DIET SO FAR: On regular sinemet I was very sensitive to protein intake, needing to avoid med time by 1 hr before and 1 hr after to be effective. In addition....for both regular sinemet and now on Rytary...if I totally eliminate protein for a period of time I feel fantastic. No freezing of gait, clearer mind, higher energy, less fatigue, and I need less sleep. I use 100% fruit juice (V8-Fusion) and cut it with 50% water. Drinking 2 bottles per day (equivalent of 1 bottle uncut juice = 27 grams carbohydrate, 0 grams protein). I've done this for 5 days before and, again, unbelievable how much less my symptoms are. Of course, I know I can't go with no protein forever!!! One more complication...I know I have a food sensitivity to at least potatoes (a nightshade). Eat lot of potatoes and the next day I have stiffness, joint pain, and fatigue. So, I don't know yet if some of my problem is "exactly what all I'm negatively sensitive to" or "protein sensitive". I know of at least 1 other person with PD who had the same impact of removing all protein for a period of time. Does anyone have experience with how much protein, impact of different types of protein, and best time of day to eat it! Sorry for the long message!
  10. It has been a long time since I've been on this website. For some strange reason I couldn't access it for a period of time. I had DBS on one side in October of 2011. Second side January of 2014. I can relate to agree with everything MIMILASTER said. DBS has been a lifesaver for me. My primary symptoms have spent stiffness, slowness of movement, dystonia. Never hardly any tremor. I'm so grateful for DBS. Six months ago I had an MRI done and my stimulators were turned off for 45 min. The result was "unbelievable". I turned into a hunk of granite. Literally could not move a muscle on my right side, and barely move my arm on the left. And this was still with medications in me. Diagnosed in early 2003, with symptoms starting two years in advance of the, I never dreamed at the time I'd be doing as well 15 years later. A couple of years ago I started having problems with freezing of gait. Severe lower back pain from stenosis actually started the problem. Still wrestling with this one. Other than that, people who see me are very surprised when I tell them I have Parkinson's disease. My how we take things for granted.
  11. So, the dystonia thing is legit

    Parkinson's is truly a journey...never knowing, for sure, what's ahead. I developed really bad dystonia back in 2009-2010. Would start in my neck, then sometimes go into my right arm and even the leg. Fortunate for me, DBS in Nov 2011 is still taking care of it. A God-send for me. I empathize with those of you getting botox shots. A pinched nerve in lower back has led to injections recently, can't say they are fun. I hope they come up with something that works for each of you soon. Dwight
  12. My dad, his young onset P.D and our relationship

    Piink, thanks for taking off your mask and being real and vulnerable with this group. That took courage on your part and I have great respect for that. Most of us "older dads" (I'm 60 now) all have some regrets that we can still carry looking back and wishing we had done something different with our children. We're not all very good at sharing thoughts and feelings with those we love the most. Having had PD now for over 14 years, it can be an experience somewhat like "early death"...which can give one the sense of "there's not much time left". That can also make one have more appreciative of the things that are really important in life. All of this to say that the stage is set for a very special time for both you and your dad. Keep going. There's a special blessing ahead for both of you...one that both of you need and deserve. God bless. Dwight
  13. DBS Adjustment Helped with Freezing of Gait

    So far I've not noticed any impact on speech from different program settings.
  14. DBS Adjustment Helped with Freezing of Gait

    Thankfully, I've not had any speech problems before or after DBS. My symptoms (before DBS) were dyskinesias (from heavy sinimet use), bradykinesia, stiffness and bad dystonia. Programming adjustments have been for progression of bradykinesia and stiffness, and then most recently freezing of gait.
  15. DBS Adjustment Helped with Freezing of Gait

    Swallowing has never been a problem for me. Group C is now helping my gait the most. Wish you well!
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