Urgent question need advice
Posted 06 July 2012 - 11:08 PM
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.
Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.
Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml. Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.
Posted 07 July 2012 - 05:46 AM
I wish I had a solution to your hair problem but I don’t. I just wanted to object to your statement about not knowing how to be a caregiver. It seems to me that you are an incredibly good caregiver and even though you may not know how to solve every problem that comes up, your efforts alone must give your wife great comfort.
Improvise, Adapt and Overcome
Posted 07 July 2012 - 09:12 AM
Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD
Posted 07 July 2012 - 05:37 PM
I don't know how to keep her bald, but I have two thoughts.
-Try a silk satin pillowcase (it's slick, not like cotton, so might not be as irritating). Try to find real silk, not polyester, but any satin material might be better than cotton.
-Try letting her hair grow out? It might be that the razor stubble is what is irritating - it would be to me. If her hair were an inch or two long it might not feel as irritating.
Posted 07 July 2012 - 07:00 PM
Your wife is very lucky to have you! Please don't give up on her! She continues to need you, her rock!
I am my husbands caregiver and believe me I don't enjoy it, and I know Rick doesn't love it either. Neither one of us asked to be touched by this awful disease,however I will always be here with him! I am in the process of getting help. 2-3 days a week for a few hours so that I can do something for me. My husband is constantly needing help. He wets himself and the bed so I am up several times each night to change the sheets. I begin the day at 4 am getting Rick's medicine. He then wants breakfast and we start the day.
I write this so that you know you are not alone! There are many of us including you that are angels on this earth and we are here to help our loved ones. The idea of satin sheets and pillow cases was a grat idea. Good Luck and hang in there! Harolyn
Posted 08 July 2012 - 09:11 AM
I also talked to a friend who recently went through chemo for a stem cell transplant and lost all her hair. She also shaved her head at the point where she only had wisps and clumps left. I asked her about your wife's situation and she told me that what she found helpful was a very soft, very tightly knit "beanie" cap to wear at night - like the kind they use for newborns in the hospital. She said this minimized her discomfort, but you may have to try several before you find one that works and that it needs to be really smooth knit so as not to "catch" the hair in the cap itself (defeating the purpose).
She could not remember where she got it and no longer has it, but you could perhaps look online.
I found this website and from her description this sounds sort of like what she used. I can tell the solid colors are a fine gauge knit:
I think you want to get one that is a little stretchy and fits snugly rather than just a scarf type.
Just FYI, My friend also gave up on the wig and began wearing scarves, caps, etc. because the weather here is very warm and humid and a wig is just too uncomfortable. She looked gorgeous in her scarves and caps which covered enough of the "bald," and not having hair just drew everyone's attention to her strikingly beautiful eyes. Her hair has grown back now but she has kept her hair in a very short style because it really is so attractive on her.
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Posted 27 November 2012 - 02:42 PM
So while that particular $2 beanie didn't work for me, I have not given up on the idea.
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