Life is never about One Thing, even when that One Thing is Parkinson's disease that has a terrible way of making itself present in every corner of your daily routine. This blog will discuss a wide range of topics about life and living. Success, love, coping, gratefulness. Parkinson's doesn't stand a chance against these powerhouses.

Sunday, 12 February 2012

Looking Forward to Living life just a little bit differently with Dropped Head Syndrome

You can  no longer  look people in the eye , eat without dribbling food onto your newly ironed shirt and your computer monitor might as well be on mars.   An unwelcome nemesis has moved into your life  and its name is  'Dropped Head Syndrome" or as it's commonly referred to  'DHS '.
DHS is a symptom characterized by severe neck extensor weakness, resulting in chin-on-chest deformity in a standing or sitting position.   Catch phrases such as 'keep your chin up'  or 'look on the bright side"  do not quite have the same meaning anymore.   This problem is what some would call 'a pain in the butt' (I'm being polite here) and it can be a frustrating and upsetting way to go through life.  Ahh, 'LIFE" now that's where I'm going with this.   We may not be able to experience 'life' as we knew it but we can still experience  and enjoy it, albeit, a little bit differently.
Because dropped head does not always manifest itself with Parkinson's  but can be found with ALS and  Dystonia as well as other diseases, I would love to share with you some of the helpful things that my husband and I have done to cope with his dropped head syndrome. I hope the information I am going to provide will be helpful and,  as you implement some of these things your quality of  life will  get better also.    
Watching David throughout the day I try to analyze exactly  what he might need to help make doing  everyday tasks such as eating, drinking, holding a fork, getting out of bed or  lacing up a pair of sneakers a little easier.  These tasks  can be daunting to say the least  because when you can't 'look up'  balance and coordination is definitely affected.
 Let's start with eating.  Having dropped head syndrome where your chin is basically resting on your chest is not conducive to enjoying  a meal or beverage..   Swallowing can also be a problem for many with DHS.  Watching David struggle to bring a fork full of linguini  from his plate to his mouth was as difficult for me to watch as it was for him to do.
The Looking Forward Head Band and Hat System have been a tremendous help.  It enables David to eat more easily,  swallow food without choking, sip a cold beer and basically by getting his chin up off of his chest he can enjoy eating and socializing  once again.    
Along with the DHS, David  has a few other problems.  He has a resting tremor in his right hand. Watching him, I found that when his hand is 'doing something' it has less of a tremor.  Lifting a fork did not control the tremor but adding weight to that fork helped a great deal. I  found a wonderful  set of utensils that look like nice silverware but are three times as heavy .
These utensils were available for purchase on line from companies who specialize in devices for the physically challenged.   Search carefully as prices seem to vary from vendor to vendor.   The set we found are stainless steel and  include a fork, knife, tea and soup spoon.  They look  'almost elegant' and not at all like  'handicapped'  apparatus.  The soup spoon has a deeper bowl with a modified rim that keeps liquid on the spoon and off of his shirt. Wonderful!!  We sometimes take these utensils with us when dining out. And oh yes,  we alert the wait staff that we  have brought along our own tableware so that we do not  face the embarrassment of  being accused of ' helping ourselves to their silver.'
Once the fork and spoon problem were addressed, we had to conquer getting the food on to said utensil.   Again, an internet search unveiled a plate with a outer rim or lip so that when the food is pushed to the side of the plate the 'lip' kept the food from sliding off of the plate and actually helped push it onto the fork.  Wonderful !! More searching uncovered a bowl with the same principle and eating soup and chili is so much easier.
One other handy item you might want to have around are disposable clothing protectors. These are available by the box.  They stick to the clothing much like the protectors you find in seafood restaurants. They do not look like a child's bib and we find the whole family appreciates  using them for food that can be drippy or messy and they sure save on cleaning bills.
Just watching David  gives me endless ideas of how to make his life better. We've installed grab bars and a shower seat  in the bathroom and added a hanging basket next to the seat for easy access to shampoo and soaps.   In the bedroom I put a bed assist handle. There were quite a few to chose from .  The one I purchased has a rail height that can be adjusted from 13.5" to 16.5". It is tool free. The rail simply sides under the mattress and is held in place by " no slip foam" on the base bar. The rail can be used on either side of the bed and the handle is covered in foam for added comfort. It is all steel construction, solid and easy to clean. This bar  gives David some 'leverage ' and help with balance when  getting in or out of the bed .  It gives me peace of mind knowing he has that extra bit of support.
Other items we have found very helpful are stretch elastic shoe laces, shoes with Velcro closures and pull on sweat pants and trousers and zipper pull extensions.  These are little things that no one notices but makes David's life so much easier. They have helped to give him back his independence, so important to everyday living .   
The last thing I want to mention today is attitude. You won't find this 'on line' but you can look within.   Living life differently is huge. Changes are necessary and how you process these changes is  key.  We do not have a cookie cutter lifestyle and that's ok. What we have  is a challenge, made necessary not by our choosing.  We can see life change from ordinary to extraordinary if we realize that each and every day spent with those we love is a  gift and a miracle.  I hope you will take some of these tools I mention  and use them to  help you live life a little bit differently but live them with dignity and grace and joy.   
For more information on some of the devices I mentioned above, please feel free to contact me by e-mail or post your questions on our blog. I'm always glad to share and help.     


1 comment:

  1. From: Deborah Valenti
    Hi Marlena, I actually was 'looking' around on the net for some answers and possible relief for my Dad, Ernie. I came across your website and just had to forward it to my stepmum, Wendy. Since then she has contacted you and ordered and recieved your head 'band'. It has been a hard road for Dad with his parkinsons and other problems and now this not being able to even hold his... head up is heartbreaking. The worst is not knowing the why, as the doctors could not give an answer. After many hours reading about others like Dad, I can tell you it helps. Wendy has sent some photos of Dad at his support group meeting getting the package from you. He was telling them all about this new head band that was coming from the States and Wendy walked in with the parcel, so Dad got to try it on the first time in front of his group. The photo they sent of Him sitting in his chair with his head up and looking into the camera was sooooo great!
    Thankyou and I'll keep viewing your page! :) Debbie