Some updated photos

I visited for a short while with Denny today to catch up on how he’s been this holiday season, and snapped a few more photos of his progression.

Denny needs two hands to open his pack of cigarettes.

Denny’s leg braces help keep him walking around the house without additional support most of the time. 

Denny shows how the progression of ALS has crippled his hands, and cause atrophy of some of his muscles causing them to sink in somewhat. 

 
A friend of Denny’s custom made him a cane that straps onto his wrist and gives a better handle for support than a traditional cane.

 
Denny shows off his new walker while talking about how he’s going to trick it out with some flame decals and such.

 This photo shows the laceration on the back of his head, suffered during a mishap in the house where he lost the strength in his leg momentarily.

Denny through Song

By Greg Allman – I’ll be holding on

I have lived my life my way For tonight and for today It’s the strongest hearts they say That always survive I’m fallen through the years As each dream it disappears When the night is full of tears
I’ll be holding on Now this life is instant black But I won’t be looking back The rain washed out the tracks
I’ll never find again I’m still reaching for the light I’m still wearing out the night And you know I’ll be alright
I’ll be holding on
When I stand alone I don’t stand on memories Of all the ones you’ve known
I’ll be holding on
I know how it is I know how it will be (When) All the rest are gone
I’ll be holding on
Well my life is made of sand It flows right through my hand Each day I make a stand
And I’ll see it through I’ll be reaching for the light I’ll be wearing out the night
And you know I’ll be alright
I’ll be holding on
When I stand alone I don’t stand on memories Of all the ones you’ve known
I’ll be holding on
I know how it is Cause I’m broken when I’m open And I don’t feel like I am strong enough
Cause I’m broken when I’m lonesome
And I don’t feel right when you’re gone away I know how it is I know how it will be
(When) All the rest are gone
I’ll be holding on.

By Iron Maiden - Wasted
From the coast of gold, across the seven seas I’m traveling on, far and wide But now it seems, I’m just a stranger to myself
And all the things I sometimes do, it isn’t me but someone else
I close my eyes, and think of home Another city goes by, in the night Ain’t it funny how it is, you never miss it till it’s gone away
And my heart is lying there and will be till my dying day
So understand Don’t waste your time always searching for those wasted years Face up…make your stand And realize you’re living in the golden years
Too much time on my hands, I got you on my mind Can’t ease this pain, so easily When you can’t find the words to say, it’s hard to make it through another day And it makes me wanna cry, and throw my hands up to the sky So understand Don’t waste your time always searching for those wasted years Face up…make your stand
And realize you’re living in the golden years By Seether –Broken I wanted you to know I love the way you laugh I wanna hold you high and steal your pain away I keep your photograph; Not know it serves me well I wanna hold you high and steal your pain
Cause I’m broken when I’m lonesome And I don’t feel right when you’re gone away ;you’re gone away; you don’t feel me here anymore The worst is over now and we can breathe again
I wanna hold you high, you steal my pain away
There’s so much left to learn, and no one left to fight
I wanna hold you high and steal your pain
Cause I’m broken when I’m open
And I don’t feel like I am strong enough
Cause I’m broken when I’m lonesome
And I don’t feel right when you’re gone away

The Good, The Bad, and then there is Great.

Sometimes my anger can get the best of me with people who just don’t seem to care about anyone but themselves. Ah a ray of sunshine, I read all the comments made about my Denny and all the love that pours out of each and everyone of you. A man truly blessed with so many people who love him and admire him. For someone to read how he has touched so many lives and made such a big impact. Denny is a man full of pride and a heart of gold. Denny is a giver, he takes care of people and it is very hard for him to finally have to ask for help. It touches his heart very deeply to have someone give back. As we all know by now how this ugly disease works, taking away your mobility to do the simplest things in life. Denny is starting to realize just how much help he is going to need and changes in his life that will be taking place. One of Denny’s very good friends, Scott Kelley, who is a Scout leader, took on the challenge of helping Denny. James Fyock, a Scout, wanted to help. You see Denny and Diana’s driveway is on a very steep hill and is all gravel; knowing that Denny will require a wheelchair and will be unable to get in and out of the house, James took it upon himself to get a driveway for Denny. Denny put James in contact with Joe Maite’s who tries to help families out in need. Denny use to work with Joe at Akron Special Machinery here in Akron. In turn Joe put James in touch with Perrin Concrete Construction Inc. After a lot of phone calls and planning it all came together. Denny was getting a new driveway donated to him. Denny is overwhelmed by the kindness and the help that these wonderful people gave. Special thanks goes out to: James Fyock, Eagle Scout project manager, Mitchell Kelley, Ted Wood, Justin Hayhurst and JacobWood Eagle Scout helpers, and Joe Maite’s for making the contacts and making this happen. Scott Kelley, Venture Crew Advisor and Lisa Fyock – Mom and helper. Chuck Perrin – 1 of the owners, Dan King – operations manager, Brian Hayth – concrete worker of Perrin Concrete Construction Inc. Also wish to include Pizza Hut donated 2 large pizzas for the workers and out of his own pocket Mitchell Kelley bought hamburgers for everyone. In Denny’s words: “There are people I have just met, through people I have known forever, all have donated their time and efforts to helping out a stranger or a friend, if there were more people like them in this world, the world would be a much better place. When it is all said and done I will be watching over all of you.” Denny would like everyone to know that this company, the kindhearted and honest people helping him and recommends them to anyone. It came to back to Denny later that Perrin Co. offered to pay the workers for their hard work and time. And each and every one of them turned it down. Great people or what?

Perrin Asphalt and Concrete 525 Dan Street, Akron, Oh 44310 Phone: 330-253-1020 Fax: 330-253-1042 Direct: 330-252-2125

Wonderful people, doing wonderful things! Again MUCH THANKS and you did a beautiful job. It looks wonderful and I know it is deeply appreciated by Denny and Family. It is Great to know that people can touch back to the man who touches to many lives. We all love you, Denny.

How does one handle this one?

I received a call from Denny, all excited, he had heard about a medical research facility that could maybe help him. He had heard from a friend who had a similar diseases and after going to this facility he was feeling stronger and better. Denny called them and told them all about what was going on with him and can they help. They set him up for the appointment; the facility was in Columbus OH. Diana and Denny drove there the night before and stayed in the hotel. Denny holding on to some hope that maybe, just maybe there was some help. Only to go in for his appointment for the doctor to be reading over his chart and as she was reading down the chart saying “I don’t see that you have ALS but reading this” Denny’s heart just stopped and the jaw hits the floor. And in Denny’s words, he was extremely angry for the wasted trip and getting a glimpse of some hope, the words he used, sorry can’t print here. The thought of “What?” comes to mind. But as the doctor continues to read down the chart of all the test “Oh yes I see you have been seeing Dr. ???, and if he says that is what it is then that is what it is”. “But we are sorry Denny we can not help you here for ALS. Because there is no cure for this and we do not”. “The research comes to us once in a while.”

Denny explains that, “I told you this all over the phone that I had ALS”.

“I am sorry there must have been some kind of misunderstanding. I won’t charge you for your visit due to the misunderstanding, but I will tell you there is no medication out there FDA approved that can help you.” The FDA approved one medicine that out of the 20% of the people that actually took the medication only 20% of them lived 3 months longer.

In Denny’s words: “I feel that the FDA approves what they want to approve, how do you like them odds? I feel that if it was one of their own, things would be different.” So heart in hand and hopes crushed yet again, Denny and Diana went home knowing what they already pretty much knew. I don’t know how many of you saw the story of “Jenifer” who also had ALS, died Dec 16, 2003. There was a lifetime movie of her life. She and her sisters are the founders of Project A.L.S. web site http://www.projectals.org/. But the point I wanted to make with this that if you saw the movie. You could see some of the cold, heartless medical personnel, and how they react to people with this disease. I am not saying that there are not some wonderful people out there who do understand and have a heart. I will never give up hope; someone out there has to find a cure. Medical science can create a disease to kill the world and make a vaccine against it. We can spend billions on this; we spend billions on cancer research and again no cures. Makes you wonder where the priority of our government lies; with killing or healing?” Denny has a few choice words of his own, but we will save this for the book. Wait till you get a load of that.

A guest writer

As some of you already know, friends and family of Denny are more than welcome to contribute articles to the blog. This is by no means a closed endeavor. You don’t need to feel obligated to write something for the blog - it is a difficult thing to do when you sit down to really think through it. To write is to reflect. To reflect is to comprehend. To comprehend is to make it a part of you. And making this subject a part of you is a large leap to undertake.

That being said, one more brave soul is taking that leap this week. The following was sent in by Jessica Sensenstein:

My 2^nd Dad

Contributed by: Jessica Sensenstein

I have known Denny Parsons since I was 11. I met Jessica his oldest in the 6^th grade and we instantly became best friends. I started going over to their house all the time. Denny soon became like a second dad to me. Denny is the type of person that makes you feel so comfortable and you can tell him everything. He is like a big kid. My high school years were very tough for me and Denny was there. He opened up his heart and home for me. Every weekend Jessica, I and some other girls were always over there and he would make breakfast for us and Pat from down the street would come down. They were my second family. Jessica and I would go down to Pats and goof off, and then we would steal, I wouldn’t say steal but borrow some of Pats stuff in his garage when he wasn’t home. It was so funny and he knew it was us and Denny got a big kick out if it!! No matter what I had problems with I could always go to Denny, if I ever needed anything. In December 2005 my dad died and Denny was there. I know my dad is up there looking down and is ok that Denny has become my second dad. No matter what kind of day I had Denny could always make me smile and anyone for that matter. Denny is an amazing guy and I know this is hard for him and everyone close to him, but I know he will fight his hardest. I honestly don’t know where I would be with out Denny and Jessica. I love you Denny!!

Opening Up

This is very new to me… I don’t tell people how I feel..what I think about.. My father Denny Parsons is a great man..really I mean that I would even think that if I was a stranger and had a chance to meet him.. His disease………god where do I start? It makes you think..why? why something like this could happen to a man that is such a great person? This effects the whole family..but most of all this effects him.. I remember sitting at his house one night we were talking and he looked at me and said ” Jessica I am scared” we both started to cry. We said a lot to eachother that night but that is the one thing that scared me the most of all……. When I go over to see him, he makes me smile he has such good spirits, he smiles, laughs, jokes around. Lately he has been ok he has braces to help his walking, he called me one morning and was happy he was feeling great. That made me happy I don’t think I have heard him that happy in a long time.

The New Driveway

On Saturday, November 3rd, a couple Eagle Scouts, Perrin Concrete Co., and some old friends got together under the leadership of an Eagle Scout candidate and did some real good for Denny. Sue will be posting another article soon with more details, but in the meantime, here’s some photos from the day.

More coming soon…

Last weekend some helping hands came out to Denny’s and poured him a new concrete drive and improved the accessibility into his home so that he could around a bit better.  I’ll be posting photos from that soon.  In the meantime, I couldn’t have said this better myself, which was scrawled on Denny’s garage wall:

My weekend with Denny

I will go back to Friday, 2 weeks ago. Denny had gone in to pick up his braces for his legs. I was all worried on how he was going to take the news. I called him to see how he was doing and he said he was really happy because he would be able to walk better. As Denny explains this to me the messages from his brain to his legs are getting scrambled and this makes it hard for him to walk. The braces help with what they call foot drop. He is doing very well with them. Glad to see him walking around. He has been talking about going out for one more ride before he can’t ride anymore. Will keep you posted if this happens. We invited Diana and Denny over for the weekend; we made a small fire in the back yard and had a little cook out. We have to watch as he walks down the stairs as to not lose his balance, both his wrist are wrapped with an ace brace to help support his hands. Still able to use them, but with very limited mobility, he is able to write but with great difficulty. But this man is so full of life and just fits right in with his laughter and loving smile. Diana watching everything he does always worried about him as we all do. As much as my Denny does not like to hear it, this is hard on everyone. But I wish I had his strength I have always tried to be strong around him. But it is so hard to not want to just hold him and tell him over and over again how much he is loved so that he knows and never forgets this. By the comments that have come in I hope he sees that many people care and love him. And as I have said before and I will say it again, to know Denny is to love Denny!

My intro to the world of Denny Parsons

I met Denny years ago, a man so full of life and hopes and dreams. His pride is his family, his 3 daughters Jessica, Jackie and Megan. Denny would help out anyone who would ask. Always there to lend a hand. The one thing that would always make his day would be to make you smile. I remember going to the store with him and he would go up to perfect strangers and make them laugh and smile. He loves to see people full of life and smiling and not worrying about all the little problems of the world going on around them. Over the years I have grown very close to him, he is my best friend. We have shared laughs and the tears. When he started saying something was wrong, he had pains in his hand and was having some trouble using it he finally went to the doctors. They ran him through all kinds of test, nerve test, X-rays, blood work etc. I got the phone call with what they thought he had, ALS Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s Disease. Which at the time I really did not know what it was. I immediately went to research and my heart just sunk to the floor. You see, ALS is “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.” They also say they have 3 -5 years from diagnosis. My Denny was diagnosed August 2006. Denny and his girlfriend Diana came over to our house after one of the many visits to the doctors. Denny looked into my eyes and told me he did not want to see me cry. Do you know how hard that is? But I did it for him. I will be writting about his life with all the good and the bad. I want the world to be aware of this disease as it is not as wildly known about as some of the others you hear about. We need people to be aware of this and for them to find a cure.