Lucky Number 7

LUCKY Number 7

For some ‘lucky 7’ is their favorite number. There are seven days of the week, seven colors of the rainbow, seven notes on a musical scale, seven seas and seven continents.
Snow White ran off to live with seven dwarves, there were seven brides for seven brothers, Shakespeare described the seven ages of man, and Sinbad the Sailor had seven voyages. 
For Looking Forward Head Support it took 7 years to bring a dream to fruition.

Dropped Head Syndrome, caused by neck extensor weakness is found in a variety of neuromuscular disorders. My husband David has PD and In 2008 when his head began to drop I started on a ‘mission’ to find some way to help him. Day to day life was becoming difficult. Socializing and making eye contact was becoming a ‘thing of the past’. Neck braces were uncomfortable, confining and painful. Eating and drinking was next to impossible.

Working in collaboration with a wonderful lady and friend, Elaine Whittingham, (http://www.childharness.ca/) it took us almost 3 years to come up with a design that was effective and yet simple enough to use independently. Something that would enable those with Dropped Head Syndrome ( DHS) to walk about unrestricted without being confined to a chair.

Anything worthwhile is worth working for and in 2011 Looking Forward Head Support debuted. Since then, not only David but many others are helped and benefit daily from our LF system. We have customers in the U.S. U.K , Canada, Israel, Spain, Bangkok, Sweden, Russia, Germany and many other countries who are successfully enjoying a better quality of life with the Looking Forward Head Support System.

On December 1st, 2015, SEVEN years from its inception, we were granted a patent for our LOOKING FORWARD HEAD SUPPORT SYTSTEM by the United States Government. (PATENT # US 9, 198,794 B2)

Elaine, David and I want to thank all of our friends relatives and customers for their love and support bringing the Looking Forward Head Support on its 7 year journey.

Marlena Juniman 2015

 

 

 

Nothing is More Gratifying Than Achieving a Purpose 

Creating the Looking Forward Head Support System was a labor of love. My husband David, developed DHS (dropped head syndrome) about 7 years ago and  I had to find a way to make his life better.  After years of trial and error, The Looking Forward debuted in 2011. Since then, not only David but many others are helped and benefit daily from LF system.

We have customers in  the U.S. U.K , Canada, Israel, Spain, Bangkok, Sweden, Russia and many other countries who are successfully wearing and enjoying a better quality of life with the  Looking Forward Head Support System. 

An e mail we received on April 2,2013 is another affirmation that the Looking Forward is doing exactly what it was created to do. Helping to make life just a little bit better for the recipient. We would like to share this with you.  Please read on:

Dear Marlena,
Enclose please find a photo of my spouse Netta and myself, wearing your head
support system, taken the previous week in Portugal.
Thanks to your Looking forward system I was able to travel abroad. Actually
I am completely depending on this system for walking.
So far there is no definite diagnosis for my condition , a localized
Myopathy might be the nearest diagnosis .
I am also able to continue working partly in my profession as a cardiologist.
.
Best wishes , hopping to meet you in the future.
Z. S.

 

ADAPTING TO YOUR LOOKING FORWARD HEAD SUPPORT SYSTEM

ADAPTING TO YOUR LOOKING FORWARD HEAD SUPPORT SYSTEM

Looking Forward  Patent Pending

The LOOKING FORWARD HEAD SUPPORT SYSTEM™ is not intended to treat, diagnose or cure medical problems.

Because everyone is different and have their own physical limitations and unique levels of dropped head, there is no 'set in stone' rule for adapting to the Looking Forward Head Support System. 

The Looking Forward is to be  used as a 'helper'.  It is not a cure.  Wearing success can depend on just how much you wish to or can adapt to something new.  When we are suffering  from a headache we take a pill .  The instant gratification of being relieved of our discomfort is alleviated by swallowing that pill.   Instant gratification with the Looking Forward should not be expected. The reason being,  each  person has  their own level  of tolerance and adaptability.  The more you experiment with the Looking Forward the easier it will be to find your level of wear ability and comfort.  The more you WANT to get the benefits of the Looking Forward, the more success you will have.

While adjusting  to wearing the Looking Forward Headband or Cap,  you will need to  find the most beneficial place when crossing the band behind your head.    Some customers find that crossing it just  behind the neck works best while others find that crossing it lower ,toward the  center of their back is more helpful.    This crossing , pulling and stretching  of the band is how the head lift is obtained. Just winding the band around the forehead and torso will not contribute to the lift of the head.   Experiment with  placement when crossing  the band to meet your individual requirements.

When you have the band or cap correctly placed on your head or forehead , cross it behind your neck and then be sure to PULL DOWNWARD TOWARD YOUR HIPS TO GET AS MUCH STRETCH FROM THE BAND AS POSSIBLE. Then, bring the two ends of the band around to the front of your body and secure it under the breast. This pulling and stretching will assure you get the maximum amount  of head lift.        

Here are some suggestions from our clients who have been wearing  and enjoying their  Looking Forward  with great success.

1. The first time you try the Looking Forward Headband or Cap system have someone assist you.  

2. Plan on wearing the Headband or Cap for short intervals (we recommend 1/2 hour 3 to 4 times a day building time each day or weekly as you become comfortable) Please, take your time. Each person will adapt at their own level

3.A  good way to adjust to the Looking Forward  is to sit in a reclining position so that your head is supported.  When you are lying down or leaning backward the head will automatically have more support .   Leaning back in a recliner or propped up in the bed with pillows is a good way to try this.

4.  Sit reclining with the band or cap on for as long as you are comfortable. When you feel that  you want to try sitting upright in a regular chair, do so.  Should you tire, remove the band or cap for a while and begin again.  Many have said their balance becomes better while wearing the Looking Forward. This too is individual so please go slowly, at your own pace. When you are feeling comfortable you may begin wearing your Looking Forward while standing and walking.  

5. When dining or conversing it is a good idea to sit in a chair with a lower back that is no higher than your shoulder blades.  A high back chair does not allow your body to lean backward and will actually push your torso forward. This leaning forward will push your head downward.     Being able to lean slightly back in a chair  will help you to keep head  up more easily.   While sitting, keep  your back  as straight as possible. Don't slouch and try to remember to keep your  shoulders and hips pressed back toward the chair back.

6. If the band is covering your ears you can  lift and raise the band slightly off of the ear opening.  As you adjust to wearing the band the position of being over the ear will not be a problem.

7. If you wear glasses, the stems of the glasses can be worn under or over the band, depending on the style of the frames.  Frames with a flat 'arm' or stem are best with the Looking Forward System.

8. If you wear a neck brace, the Looking Forward can be put on after the neck brace is in  place. We recommend you discuss this with your physician before using the Looking Forward alone or with any other apparatus. 

The LOOKING FORWARD HEAD SUPPORT SYSTEM™ is not intended to treat, diagnose or cure medical problems.

National Parkinson Foundation - Marlena Juniman

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.

Having Parkinson’s is anything but easy, but my mom goes the extra mile to make sure that my stepfather has only the best care! Between my stepdad’s illness and mine, no one has shown more support, and been our champion!!! She deserves to be the superstar!

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.     

 

Foot Support, Head Support - When It's Broke Fix It

Foot Support, Head Support - When It's Broke Fix It.

Because lately, my life seems to be under the influence of 'Murphy's Law'  I want to share our traumatic month of  September with you.  I am a  real believer that when things are as bad as they can be that there is a lesson in there somewhere. Sometimes I have to dig deep to find it.  I guess it's an 'attitude' thing.  I can either have a pity party or knuckle down and find a solution to whatever it is that needs to be 'fixed'.

With Parkinson's and other neurological disease , not to mention the natural procession of aging (because we HATE to admit to that) may come foot and ankle problems.

Fallen arches, excessive pronation (causing the foot to turn inward) weakening of tendons and muscles, may result in an uneven, unsteady gait when walking. All of this can certainly exacerbate an already difficult way of life.    

My husband David had been complaining about pain in his ankle for about a month. Now that got my attention because he never complains. This man could be on fire and would not ask for help . You would not know he was burning until you smelled the smoke.

So, we played 20 questions. Where does it hurt, can you flex it, can you stand on one foot, does it hurt to walk. I had to drag answers out of him and in doing so began to realize that this needed immediate attention.

Being Mr. Indomitable he wanted to 'wait and see'.

By the following weekend the ankle was swollen and felt hot to the touch, David could no longer put any weight on his left foot. The pain was so bad that when I suggested going to the hospital emergency room he actually agreed. One look at his face told me not to utter an 'I told you so.”

From the ER David was admitted to the hospital. Numerous tests followed, including an ultra sound and MRI.

Diagnosis, a badly shredded tendon. He was treated with pain meds, corticosteroids, ice packs and instructions that if he did not take care,  surgery would be needed. It was, once again, a 'wait and see' thing.

I have been classically trained in ballet and danced most of my life. Feet are something I know a lot about. It is very important to wear shoes with correct support especially to help correct an already existing problem. I asked his doctor about the benefits of reinforcing David's shoes . The Dr. stated that this was exactly what he was going to suggest and in addition to medication and instructions of "RICE” (Rest – Ice - Compression - Elevation) he also gave us the name of an excellent orthopedic shoe store .

Two weeks later, pain was minimal, swelling down and now it was time for new shoes. The man who helped us was extremely knowledgeable and sensitive. David selected two pair of shoes. Today's orthopedics are not like the 'old ugly shoe days'. One pair, a sneaker and the other an ankle high hiking type boot are both surprisingly good looking.  

 Modifications were made to both pair. . A customized arch support was inserted in both the right and left shoes. (The right to prevent further damage to his arch.) On the left shoe a 'flare' was put on to keep his ankle from falling inward. This flare is very solid piece of molded leather placed on the outside material of the shoe. It is so evenly matched to the shoe's leather that it is not instantly visible to anyone looking at it. The placement of a 'flare' is individual to the needs of the patient.  David's is on the inside of his foot, just below the ankle bone. Along with the arch support this flare presses against his foot and keeps it in excellent alignment.

 Result, David's said that  the pain is gone and he feels more secure and confident when he is walking.

We are grateful for the expertise of this kind orthopedic salesman and his vast knowledge and experience.   I'm finding that in a world of what sometimes looks like hopeless despair, there is a wealth of helpful people, information and devices that keep us going.   

My man has a Looking Forward Head Support to keep him looking ahead and new supportive shoes to enable him to keep on doing that. What a wonderful world.



These shoes were 'made' for walking.



Adult Head Support. Physical and Emotional



Slight head drop 2008



Adult Head Support. Physical and Emotional

I want to talk about the physical and emotional effect that Dropped Head Syndrome has had on our family and as with any story, the best place to start is at the beginning.

Adult Dropped Head Syndrome is characterized by weakness of the muscles of the back and sometimes sides of the neck. This causes the chin to rest on the chest while standing or sitting.

We also hear terms such as Floppy Head Syndrome or Head Drop Flexion (when the head tilts forward) to describe this syndrome.

Having Adult Dropped Head can not only be physically restrictive but can also be emotionally traumatic. Not being able to look someone in the eye when speaking, to eat and swallow with comfort and go about a 'normal' workday is not an easy adjustment.

This is what happened to my husband over a period of about three years. I first noticed that his posture was not as straight as it had been and he began to look 'round shouldered'. Naturally, I'm a nag and was told so when I kept telling him to 'stand up straight', 'What am I , 3 years old?"was the comeback.

Naturally, we don't see ourselves as others see us and he was not aware of the dramatic change I was witnessing on a monthly basis. I began casually taking photos of him and making comparisons. What I saw was not only in his posture but an increased dropping of his head to a forward position.

We spoke with his neurologist who suggested a thorough neurological examination including a neck EMG ( an electromyogram) This is a test used to detect the electrical activity of muscle.) The EMG showed that David's dropped head was a symptom of his Parkinson's Disease. All other neurological aspects were ruled out.

Not all dropped head is caused by neurological disease . When a physical examination shows no neurological problems then dropped head is given a diagnosis of Isolated Neck Extensor Myopathy. (INEM) It can happen to anyone for no apparent reason.

David began physical therapy. We (I say 'WE' because when someone you love so much is going through something like this, "I" becomes 'We'.)  We bought a King's ransom in back and posture braces, neck supports and massage therapies. His head kept dropping and David could not hold his head up for more than a few seconds at a time without some support.

Treatment of Adult Dropped Head Syndrome is mainly supportive. The neck braces and collars he tried were uncomfortable and hot. They hindered chewing and swallowing and were irritating to the neck and chin. Socializing was hard. When you can't look at the person you are speaking with life is just not a lot of fun.

Seeking more help David went to Israel to see a Dr. who suggested he try Botox therapy. The Dr. had tried it on some of his patients with head Dystonia and had some success. It did not work for David and was counterproductive, making it even harder for him to lift his head. (No, in case you are wondering, he did not have a smoother , younger neck to show for the trouble.) Thankfully the effect of the Botox wore off in a few months.

Because we realized that this problem was not going to magically go away, caused me to take a long, hard look at what we were dealing with. You've heard  "If it's not broke don't fix it" I'm sure. OK, this was broke and I was determined to fix it one way or another. After years of experimentation, trial and error, make that tons of error, the Looking Forward Head Support System came to fruition.

The Looking Forward Headband and Cap system became David's way back, enabling him

to enjoy life to the fullest. To continue working, writing, socializing, dining out, and walking in the park without having to be confined to a chair is liberating.  It was a no brain-er what to call this

marvellous device. As David is heard to say "Life is good and I'm "Looking Forward to enjoying more of it."

The End of our story you ask? No way. This is just the end of the Beginning.  Marlena



Head Drop 2011