National Parkinson Foundation - Marlena Juniman
Marlena Juniman from Upper Holland, PA Nominated by her daughter Nicole Tufaro
PARKINSON'S SUPERSTAR 2012
I would like to nominate my mother, Marlena Juniman for my Parkinson’s Superstar! My stepfather, David, has Parkinson’s. I myself, have Multiple Sclerosis. My mother has had to deal with both of our illnesses and has risen to the occasion! Most recently, she developed the Looking Forward Head Support System (Patent pending) with my stepfather David as the initial inspiration and model.
David has developed 'dropped head syndrome' and the Looking Forward has been life changing for him. It has helped him to be able to once again look people in the eye. He now enjoys dining out and has an easier time swallowing his food.
It is Marlena's hope that the Looking Forward will help Parkinson’s patients worldwide who develop dropped head syndrome, to have a better quality of life. My mom never ceases to amaze me! She and my stepfather run a business and my mother is also a fulltime caretaker of my stepdad. She never tires of researching and finding solutions to whatever is presented to her and she does so with a smile and a never ending positive outlook.
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.
Friday, 13 April 2012
Sunday, 12 February 2012
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.