Jump to content

  • helpline
  • donate

E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter

Urgent question need advice

  • Please log in to reply
6 replies to this topic

#1 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,987 posts
  • LocationSeattle, WA

Posted 06 July 2012 - 11:08 PM

This my wife's log in she is to weak to type. need advice. My wife is having sudden loss of energy that last several hours, The meds are being adjusted. But it is still happening. When this happens she walks and very slowly even with a walker.Chewing takes to much effort. She feels helpless and irritable. She can't get comfortable, Very stressful for both of us,She can only lay on her back.Do to hair loss she wears a wig. When laying down she takes it off I shave her head when it gets a quarter inch long. AS it grows out it is irritated by the pillow. I need to find a way to keep her head impermanently bald. I don't know how to make her comfortable when she hurts all over and doesn't have enough energy to adjust her pillow I don't know how to be a caregiver. Can anybody help?


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 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 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 115 caregiver hours/month keep me sane.


All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.

#2 Ken_S


    Advanced Member

  • Members
  • PipPipPip
  • 157 posts
  • LocationNorthwest Wisconsin (Lake Nebagamon)

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

#3 Golden01


    Advanced Member

  • Members
  • PipPipPip
  • 850 posts

Posted 07 July 2012 - 09:12 AM

Ray, I agree with Ken_S. You seem like a wonderful caregiver. Knowing what to do can be hard.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD

#4 katiemae



  • Members
  • Pip
  • 7 posts

Posted 07 July 2012 - 05:37 PM

i also think you sound wonderful and your wife is luckier than my mom, you are more patient than me and have clearly been doing it a long time, too.

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.

Good luck.

#5 tedybrs



  • Members
  • PipPip
  • 10 posts
  • LocationGainesville, Virginia

Posted 07 July 2012 - 07:00 PM

Hello Ray,
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

#6 katiemae



  • Members
  • Pip
  • 7 posts

Posted 08 July 2012 - 09:11 AM

Hi Ray,

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.
  • Beau's Mom likes this

#7 Horse N. Buggy

Horse N. Buggy


  • Members
  • Pip
  • 1 posts

Posted 27 November 2012 - 02:42 PM

A word of advice on the beanie... I have hair, but I suffer from migraines. I find that if I keep my head warm at night, the migraines are less likely to hurt. Since winter has just started, I found that the local drug store was selling these beanies for $2. I bought one hoping that it would do the trick. It worked great the first night. But now it's too big to stay on my head all night. Now, there are several factors in my case that are different from your wife's: 1) I am not bald 2) it sounds like your wife doesn't move her head around at night so maybe it wouldn't slip off her head as easily as it does mine 3) I bought a one-size fits all, as a woman I probably should have bought a kid's size 4) I got the beanie with no edge, I think a longer cap would feel like it is not slipping off my head.

So while that particular $2 beanie didn't work for me, I have not given up on the idea.
  • Beau's Mom likes this

0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users