Marjorie Weiss
Forum Replies Created
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My husband’s use of Dial soap helped with the smell. I can smell the same thing on the people in his boxing class.
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My husband is a long-timer with DBS. Left brain was done in 2007; right brain done in 2009. He continues to have marvelous results from it. Meds NEVER helped him but this saved his life. A previous poster said DBS does nothing for stiffness but that has not been his experience. It loosens him up considerably.
Just last month he has it tweaked so that his right arm could swing again and get looser.
He has had PD For well over 20 years and still most people would not know he has it since he looks and acts fairly normally. Close up, of course, one can tell something is “off.”
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I’m interested in finding out from others how they locate the outside help and resources that can assist them. From conversations with other caregivers I am not certain that we know where to begin.
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My husband had DBS in 2007 and 2009 and still gets great benefit from both implants.
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I enjoyed them all.
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I am a caregiver to my husband who has had PD For at least 20 years (He is now 69.) He had Deep Brain Stimulation surgery in 2007 and 2009 and is still benefiting greatly from it. Marjorie
Feel free to message me.
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Melatonin has helped calm my husband’s dreams. We had to reaserch it ourselves to see that  it was helpful.  What would we do without the internet since drs don’t tell us these things?
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We are looking into a new bed right now, a split king adjustable with two twin XL bases. Stearns and Foster and Serta both make a firm mattress that provides more support when my husband will sit on it. (He does not like how he sinks into the one we have right now while sitting on the edge of it.) Those mattresses have coils so that provides a stiffer edge. A Sleepnumber bed provides no stiffness on the edges and he would just sink way into that.
As far as sheets go, we have had good success that has eased his ability to shift around by using bamboo sheets by Cariloha. (expensive but made such a difference in his ability to move around in bed.) They also provide more coolness than cotton, wicking away moisture. Other places call these tencel sheets lyocell. They are eco-friendly, too. I found that Mattress Firm sells bamboo sheets that may be cheaper than the Cariloa. You can feel the smooth sliding feel of them at Mattress Firm to get a sense of them.
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My husband went many years after his GBS surgery without taking any medication.
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My husband went many years after his DBS in 2007 and 2009 without taking any medication. He did not need it. He does take carbidopa levodopa now in a very small dose.  Neurologist, however, he’s not certain that it helps him right now at all since the GPS does most of the work.
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Such an wonderful response for you.
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Don’t wait too long because if you begin to have cognitive impairment you likely will not get approved for it.
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Good to hear about your positive result
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We have had good luck with bamboo sheets from Cariloha. Â They allow him to slide just enough to turn.
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Talk to his neurologist to get a referral.
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Try looking for a group in your area. Also, Michael J Fox foundation has info on this as well as a number of other sources online. Google it. Good luck.
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Look into melatonin for the sleep/dream issues. It has helped my husband stop having night terrors.
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Oh, Angela. I hope you will get a second opinion on that five-year window. My husband has had PD for over twenty years and Deep BRina stimulation surgery has been his salvation. He also participates in Rock STeady Boxing classes, and had been trained in LSVT Loud therapy for his voice and LSVT Big for his movements. There is help out there.
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I am interested.
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I am interested. How can you securely get our info as I would not like to post my email on this thread?
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JB, thanks for the response. My husband did the voice therapy and it made a big difference but he is reluctant to keep up with the vocal exercises to maintain it. I had to call him a fin asshole recently (and we are not ones to call such names) to get him to focus on my need to hear him so our relationship does not suffer more. So we practiced them one day and that was two weeks ago. Are you laughing with me on his diligence? I guess I will have to come up with a stronger name to call him. lol
Rock Steady Boxing classes have helped him with balance so if it is available in your area, check it out.
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You can also mix it in with oatmeal or into pancake batter or in baked goods. I also dissolve it in hot tea.
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Try some online things on youtube. There are lots of them for PD patients.
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What. Lovely thing to hear about.