Marjorie Weiss
Forum Replies Created
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My husband had almost no effect from carbodopa/levadopa and had terrible pain, stiffness and tremors. His neurologist put him on the highest dose that he had ever tried on anyone and it had absolutely no effect and the side effects were terrible. Hence, he got deep brain stimulation surgery which saved him. He had his first surgery in 2007 for his left brain and second surgery in 2009 for his right brain and still continues to have very good response. However, Parkinson’s marches on and has now messed with his balance. He’s had it for at least 25 years and is now 72.
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I’m so sorry it has not worked out for you. My husband has had a DBS for 17 years for his right side and 15 years for left and is still benefiting. Has Medtronic been able to help you?
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My husband is trying it right now. We both have read the book, Parkinson’s and the B1 Therapy. I also was part of a support group that zoomed with the author. You have to use B1 HCL. He is slowly working up in dosage as described in the protocol in the book. The Facebook group is also filled with helpful advice and the author of the book is active in that group. Many people are seeing remarkable reduction in their parkinsonianisms.
here is the link to the Facebook group.
https://m.facebook.com/groups/parkinsonsb1therapy/?ref=share
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My husband had surgery in 2007 for the left side of his brain and 2009 for the right side of his brain. It helped him control the tremors so that even all these years later they barely show up. The best thing for him was it took away the pain that he had from the stiffness. His neurologist once told a resident that he had had a remarkable response to DBS.
before the surgery medication did not help his tremor and terrible stiffness in his legs and arms at all. He was given the highest dose of CL that his neurologist had ever given a patient. It did not make a difference and the side effects were vast. Hence, the DBS surgery was an absolute lifesaver.
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following this topic for more guidance.
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My husband had DBS surgery in 2007 and 2009, for each side of his brain. Each time it was done in one surgery at Jackson Memorial Hospital in Miami. He was awake for the first part and then they put him asleep when they moved the leads into his chest for the battery placement. He went home the next day each time. Each time the battery was turned on/activated one month following the surgery.
He never responded to medication to reduce his tremor. He was always in pain in his legs and his shoulders due to the tremoring. He never had on time. Never. Â All of that went away after each surgery. Without DBS I believe that he may have ended his life since nothing helped him and he was in a terrible, terrible state, not being able to, hold a book, eat easily, or do any of his hobbies. His life was restored to him. After the second surgery he had the bonus of Joy in a way that he has not ever experienced due to how the surgery affected his brain and mood. It lasted for a while.
He is now 70 years old and still benefiting from DBS. He has had the batteries replaced three times. PD slowly marches on and his balance and cognition have been affected. However, he still walks without need of a walker or a cane. He plays pool. He goes to rock steady boxing. We travel.
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My HWP has the peeling, flaky skin. It is part of PD. His dermatologist calls it seborrheic dermatitis. He is now using Hydrocortisone 2.5% when it flares red and nasty and then Ketakonazole. We return to the dermatologist in five months for a review. It gets better when he is not in humid Florida where we live.
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We established a Legacy Trust ten years ago to avoid probate and get advice from the attorney if he needs nursing care. It includes our wills our power of attorney, our advance directives/living wills and a few other things.
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My husband has had good help with the freezing and falls through Physical therapy. Core strength had to be enhanced quite a bit. Also, a man in his Rock STeady boxing group has had great help for the soft voice using a Speechvive device. My husband is considering getting one. http://www.speechvive.com
speechvive.com
Speech aid for Parkinson’s patients | SpeechVive
The Parkinson’s speech device provides immediate speech volume and clarity improvement without additional therapy.
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A woman in my caregiver support group said DBS helped her husband’s dyskinesias a whole lot.
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Have you read the book? I found it to be very helpful to know how to dose. My husband was dosing incorrectly until we read it.
My own experience with Western medicine is that doctors so often know little about alternative treatments and nutrition. Functional medicine drs know much about such things and are usually also chiropractors. Good luck to you.
I also gleaned info from this website. https://b1parkinsons.org/about-the-b1-protocol
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Try hiding it in his breakfast cereal. Like hiding vegetables and things for kids. You never know maybe it’ll work. You might try the magnesium Glysinate since it is better absorbed. We have to be sneaky.
we get the psyllium husk at a health food store. Â That one really helps me when I need it.
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My husband tried mannitol, Brenda. He did not find it helpful after using off the whole bottles worth. So he did not continue. For his constipation he put a cap full of MiraLAX and a tablespoon or so of psyllium husk on his cereal every day and that keeps him regular. He also takes magnesium citrate every day which aids in sleep as well as pooping
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Interested in knowing about that life extension supplement. I always like looking for more functional medicine approaches to situations.
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Linda since you are in the southeast message me. I am in Florida.
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ally, I made a response and it has not posted. Lost?
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Bob, why not get a bed rail? My HWP uses one and it is a big help. He also has one that fits into his
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I am able to motivate my husband when I remind him that if he does not exercise and it affects us and not just him. Maybe that will help your mom see how important it is. I am glad my sharing has been meaningful to you
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What state do you live in? EAch are provide differing things.
Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.
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I found this article and plan to read it thoroughly. https://www.payingforseniorcare.com/parkinsons/financial-assistance
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A trust helps you avoid probate. A will always goes to probate. Â Glad you are doing well.
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Look into the LSVT Loud speech therapy for PD. It helps.
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My husbands devices are from Medtronic and he can have more than one program. He usually sticks with just the one.
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The speech issue is very interesting for me to have learned. Fortunately my husband has not had that issues, although the electrical signal can be changed so that he cannot speak at all. (He had a neurologist who thought that was fun to have done to him one day.! We don’t see him anymore.)
He had success with it controlling tremor and reducing stiffness. He did not have dyskinesia in 2007 or 2009 , the years of his surgeries, and only has gotten it in the last year or so when he takes carbidopa levodopa .
He had the surgery at Jackson Memorial/University of Miami.