Summer '07
June 21, 2007
First of all, I want to apologize for not writing sooner. This has been very hard for me to gather my thoughts and put them in writing. Sitting here I’m still not sure where to even start the process. I know for sure that I am heartbroken. Who’s to say what is fair and what is not fair? Me! I have that right. This is not fair. To have such a wonderful man in my life and something like this UGLY disease take him away!? Well not without a fight!
Dave and I first started out as good friends. A friend that I really could share my thoughts and feelings with and not feel silly or judged. Not a familiar place for me to be in, when it comes to friendships. A true friend. After about 7-8 months, I got that feeling in my stomach that just …. there’s no way of explaining that feeling. I’m sure some of you experienced that same feeling when a friendship turns into something more or you know when you look at someone for the first time and you were meant to be with each other. Well at that point is when our romance developed.
We were married in 2001 at our home with family and friends witnessing our vows to each other and celebrating our next chapter in our journey of life together.
I have never had so many emotions go through me all at once. I get sad, angry, frustrated, fearful, and just plain sick to my stomach. Then there are the emotions of protection, wanting to nurture, courage and up for the biggest fight of life. (Those are just a few out of my many) The biggest part of having so many emotions, I never know which ones will come at me at any given day.
I totally understand that Dave is the one that was diagnosed with ALS. I see his sadness, his fear, frustration, even embarrassment at times, and I see him ready for the fight. I would never take away those feelings. They are validated. However, I feel that others forget (and even Dave at times) that he has a family and we are also living with ALS and the family dynamics does get greatly affected.
As I continue to add to this from time to time. I ask only one thing from all my family and friends. I will try to respect you at all times and I know that you will try to respect me as well. I will try to remain honest and truthful. I also want you to know that I am in a different situation than you due to me living with Dave and seeing changes, the conversations that Dave and I have to plan for our future. So I ask…If you really don’t want the honest answer and are not ready for that honest answer then please refrain from asking. I will also try not to give to much information, because I am aware that not everyone sees or feels what I am going through and may not be ready for the truth.
I will now sign off for awhile. My thoughts and prayers are with you all. Good health and enjoy what you have right out there in front of you, it may not always be there. - Jen
Spring '07
May 14, 2007
I am sitting here tonight, wondering what my next step should be. As you all know Dave is now with a higher power. Dave and I have had many conversations about what possibly can happen when we cross over. I always joked with Dave and said well it better be better than this. He agreed. I have to believe it will be and if it isn’t –it is now with Dave there.
I miss Dave so much already. I always heard the saying (and I believe I have used it many times during Dave’s illness) “I am heartbroken”; however, I never realized that it is such a powerful and physical pain. I know, because I am desperately trying to find a way to make this pain go away. I do realize that it will take a very long time before it will ease due to the amount of love I have for Dave held tight in my heart.
I do find myself at peace knowing that I was by his side until the very end and knowing that he died peacefully and quickly at the end. I am also at peace knowing that I respected his every wish to the very end. I can also say that I am not left sitting here wondering what I could have, should have or would have done. I gave him my all until the very end. There was eye contact between Dave and I that evening (Dave and I had to depend a lot on eye contact due to the disease silencing his vocal chords). That contact between the two of us told me that he loved me and that it was OK to let him go and that he appreciated me and all that I did. And with that, I knew what to do for him.
Planning Dave’s “Life’s Celebration” was comforting for me. It was my last gift that I was able to give to Dave. It really came so easy, and I’m sure I had some guidance from him. I just kept saying to myself, “What would Dave want?” and “What would Dave do?” --So how could I go wrong?
To my family and friends, it was wonderful having you all there whether it was in person or in thought, to share with me how much I loved and treasured such a wonderful man. I knew how important Dave’s family and friends were to him and I wanted to share and involve everyone that touched Dave’s life. I hope I did alright.
Dave was extremely important to me and a great part of my growth. As I type, I sit and ponder on all that he has taught me. One of the many lessons that I will need to continue to work on for the rest of my life, is that Dave always wanted me to be more confident with my assertiveness. (He could never understand why I had this problem because I certainly didn’t have a problem being assertive with him). He always encouraged me to say what was on my mind or to do something that I was uncomfortable with. I would try and I always felt comforted knowing that if I struggled or failed he would be there supporting me or stepping up and taking over. He always assured me that I never failed and that he was proud that I had tried.
He also taught me forgiveness. Forgiveness had been a hard one for me. I had experienced a lot of betrayal in my lifetime. I had to put up a wall to protect myself. If you hurt me, I was done with you! It became very lonely for me with the protection I had created for myself. And because of Dave, I had the courage to take down the wall and be able to forgive.
There is so much that he gave to me and I will share in time.
It had been a while since Dave and I had made an entry to his journal; however, it has been quite a journey sharing with each other and it became a struggle for me to share with all what Dave and I faced day in and day out. And for that I apologize.
I will do my best now to share with you what Dave and I have been up to since last year. There was the last entry that Dave made that was a little off, due to the struggle Dave had with communication, which also made him tired. I will work on that, I promise.
I was very busy trying to give Dave the best care that I could, which made me unavailable to help with advocating and giving back to all those who have helped and supported Dave and me. It now is my turn to give back. I am going to rest first and try to heal from my loss and then start my journey by giving back.
Thank you to all and I will continue to write and share with you what had happened since last May, which in turn will help me with my grief and loss of Dave. - Jen
Spring '07
May 9, 2007
Some time prior to Dave’s passing in May Dave had written a message intending us to share it as his parting words. Many of you heard this message
at Dave’s gathering as he wished. Here is Dave’s message in its original text straight from Dave’s computer.
Obviously, if we are all gathered here today, I lost my battle with ALS. First of all, I hate to lose so I am a little upset about that. I fought the best fight I could and I hope everyone can remember me for the way I was not the way I went out. I am now on the other side looking over all of you and missing you all.
I can’t thank you all enough, especially my wife, mom, Gill, and Mike for making these last couple years easier for me and my family.
To all my family and friends, it’s too hard to go into detail about the special times we’ve shared together because there are too many to mention. But I have enjoyed very special times with each and every one of you and as long as you keep those memories close to heart, I will always be with you. A little piece of all of you helped to make up the person I was.
I really do feel lucky for the life I had. I have always been surrounded by the greatest friends anyone could ever ask for. Every single one of us is completely different in our own way, but put us all together we are unstoppable. Don’t ever take for granted what we are all blessed in having. I’ll be looking in on every one of you, some more than others….. and you know who you are.
I got a better chance at life than a lot of other people ever got. I used to tell my friends if I had died at 18, which almost happened a few times, I would have been content because I felt like I had already lived a full life with all the fun and adventures we had growing up, and we had a lot. Well, I got over twice that amount of years, so I can’t complain. And what great years they were and I owe them all to all of you.
To the kids, Chris I wish you well in everything you do because you do have it in you. Brittany, my favorite daughter, who I will always have faith in, the offer is still open. If you ever need to talk about anything, anytime, I am still listening. Madison, study hard, take good care of your mother, and never stop smiling. I love you all.
To my beautiful wife Jennifer, I am so sorry I had to leave you so soon. I tried my hardest to stay. This was so unfair, out of all the people in the world who didn’t deserve this, it was you. You are the most caring person I’ve ever met, and I am so honored for the few years I did have to spend with you and our kids. They were the best years of my life. You also made the last part of my life worth living. I couldn’t have asked for anyone better to take care of me and be my partner. You did a great job. The greatest thing I have to leave behind for you is the wealth of love and protection from our friends and family. Use this wealth, it’s here for you. I will always love you and I will always be with you wherever and forever. I miss you.
I would like my wife to sprinkle half my ashes off the point of the island at North Pond. This is where I spent the most stress free, relaxing days of my life. The other half I would like buried in the family plot next to my dad.
Don’t be sad on this day. I hope that you will all truly celebrate my life and remember all the great times we had. Have a jello-shot for you and a jello shot for me. Why Matt?..…(pause). Right, cause there’s always room for jello. I love you all and I’ll see you on the other side!
Play disk.
Winter '07
March 21, 2007
All I can say is too much snow! Thank god for the deck and living room. I don’t use my wheelchair too often because they’re not many places to go when you’re snowed in. Besides, I’ve lost control on my hands and fingers so I can’t use the controls anymore. Instead Jen brings me to my soft reclining chair during the day.
Jen and Mike now type for me so that I can continue to let you know how I’m doing. I’ve got a communication device that I’m learning to use because it getting more difficult for me to speak.
Sometimes I just want it to be over and sometimes I’m glad I have another day. For example, the Valentines Day snowstorm we got over a foot of snow and it was so windy we had huge snow drifts in additional to the piles of snow created that were creates by the plows clearing the driveway. Mike came up the following weekend and dug three tunnels in the snow pile for Madison to play in. My sister in law Laura went in the tunnels to take pictures and then came into the house to show me. Mike is crazy, he dug three entry ways that lead to a room that was so big Madison could stand in it and also built a smaller room to hang out in. Madison and his friends played in it for two weeks! That was fun to watch and good for me to see the kids having so much fun.
Jen and I prepared my new snowmobile that I got a few years ago to give to Norm and Tina for Christmas. It’s the least I could do for all the work that the both of them have done for us. I asked one of my friends to deliver the snowmobile to his house and put it is his driveway along with the trailer. Jen put a big bow on it, Mike had primed it and it was ready to ride. They were elated! So now Norm and Tina and the kids are snowmobiling on the lake and river.
These things make me happy!
One more thing, we are getting more hits from around the world on our website - I LOVE READING THE COMMENTS in our GUESTBOOK!!! Hint. Hint.
And bye the way, if you are interested in the drug regimen that I’m taking please send us an email.
Fall '06
December 21, 2006
Finally, the house is done! We finished the garage, flooring, insulating, plumbing, electrical, sheet rock and painting and the deck. THANKS EVERYBODY!!!
Jen and I don’t have to sleep on the air mattress anymore! Jen picked out some nice furniture to put into our new bedroom, bathroom, and living room and my brother Mike haggled with the furniture store guy and got us a good price.
This years Halloween Harvest Fest was great as usual. The custom made multi media exhibits were brought up again in Gerry’s cube van from Boston. Since we used the same place last year what took us 8 hours to set up last year we did in 3 hours this year. I have to hand it to my family and friends as even though we had a hug storm that night with 40mph winds and driving rain it would have been easy not to go but everyone showed up.
Judi Keene did another fantastic job planning and coordinating the entire event. Like last year we had a silent auction, costume prizes, door prizes, and lots of fun. We generated so much revenue for the space we rented that they lets us keep the exhibits up there until the following day which made breaking it down much easier this year.
By the way, we have lots of special edition t-shirts commemorating the Harvest Fest. If you’d like one just email Mike and he’ll send one out to you free of charge.
We went to Jen’s sister house for Thanksgiving and had a very good meal, low key and relaxing which was just what I needed.
I began using a souped up wheel chair that I can power with my hand because now I can get around without needing someone to push me.
Now we are getting ready for our first Christmas in our new expanded home. It’s pretty good and makes getting around much easier. The bed and huge specially built shower is much more pleasant too. Jen likes the space better too because now she can make the old living room a dining room which she has always wanted.
Summer '06
September 21, 2006
Summer was fun and tiring at the same time. The foundation of our addition was completed earlier this summer. Jen fills the back of my pickup with returnable cans and bottles which we use to fund more beer for the guys. The framing was completed, walls put up, the roof put on and shingled, and windows and doors framed.
I stopped going to work in this summer to spend more time with Jen and the kids. The people I worked with were sorry to see me go but they understood that getting around was getting to be too much for me. They’re the best!
So many people have been helping out on the house that I can’t mention them all but I have to say a special thanks to Norm who comes over everyday after his regular job and even on his days off to work on the addition - and his wife Tina also does a great job helping me personally with my experimental drugs but also is very understanding with Norm spending so much time over here.
It has become to difficult to go upstairs to our bedroom and I wiped out again this time the back of my head hitting the corner of the coffee table in our living room. I was scared because I hit it so hard that my entire body was tingling for a few days but I recovered and the gash closed. We moved our bedroom downstairs into the living room and now sleep on an air mattress so that in the morning we can roll it up and make room for kids, friends and family during the day. I’m using a wheel chair to get around now so even small things like having a ramp to go outside or having more room to get around with the addition is pretty good.
My brother Mike came up from Boston a lot this summer to help Stan put siding on the house and other construction things as needed.
On the 4th of July we had a party and I got around the yard in my wheelchair and I also used for the first time a headset with microphone and amplifier that made my voice much louder. I had to do this because my friends get loud and it saves me the energy from having to shout over everyone. Mike, as always, was playing with fireworks and put on a pretty could show for the kids once it was dark and late enough.
July 13 was my 39th Birthday.
Every year Jen and I host a camping event in our yard of two and a half acres. Again our friends came through. We built an even bigger fireplace for a bon fire from all the granite stones that were dug up during the foundation excavation. I think we had over fifteen families, lots of friends which came in campers and tents. We made campsites for everyone and even made signs to designate who was camping where. We called our yard the LaFayette Family Campground. This year we got portable toilets for those campers who had tents and needed facilities. The event started on a Friday afternoon and went until Sunday night. Tina planned all kinds of events - it was really cool and better than what you could get at a summer camp and more fun too. We had nature walks, travels to friend’s pool, kids painting parties, poker tournaments, relay races and of course the big party on Saturday night which I don’t think too many people got much sleep. It makes me feel so good that I can make all those people happy with their families.
We are planning on putting in the doors and windows as soon as possible in the addition to keep the house warm when the weather cools in the fall. Jen and I are getting tired of the air mattress too.
Spring '06
June 21, 2006
It’s been a while since I last provided an update but things have really been hectic. The news story that ran in February was really good timing for Jen and the family. They did such a good job on the story and the local interest really helped my family out - and I’ll tell you why.
But first I have to tell you about my fabulous cousins and what they did for ALS in May.
My Aunt and Uncle, Jack and Phyllis have such a great family and their children Donna, Maureen (Maureen says I’m her favorite - so take that Mike:) ) and Sean do so much for us during the year. But in May Donna organized an ALS event to create awareness about this disease. She organized a Longaberger basket bingo all day event and over 200 people showed up! It was pretty fun especially since my brother Mike had to make a speech and really didn’t know much about Longaberger baskets so he just said thanks for participating to the Jagermeister thing - everybody laughed.
Our website is know getting 20,000 hits per month and some Australian sites are linking to us too. This is fantastic!
Ok, back to why the news cast was good timing.
Walking under my own strength has become more difficult and I’ve had two visits to the emergency room to get sutures in my chin when I wiped out at work walking to my truck in the parking lot and then a few months later on my eyebrow when I fell on to my deck railing at home; so I’ve started using a walker keep my balance. In April Jen and I decided to start thinking about modifying our home to make it wheelchair accessible and maybe putting on an addition because our bedroom is on the second floor and at some point getting up there will be very difficult.
My brother and I started out small by widening the front door entry and making a few modifications to Jag’s pen and realized we had to do much more and that’s when all the publicity we’ve created began to really help out. My old boss Ralph, from a high school construction job, showed up at my house one day with some of my friends and measured everything and scoped out the yard - it was funny to see so much measuring tape fly around - it was like bees buzzing around a hive. Anyway the next day Ralph came back with blue prints on how he was going to transform my house to make access much better and even build an addition where I could have our bedroom on the first floor and Jen could have a massage room and office to continue her practice here at the house. It was incredible!
So the spring began with lots of mud and digging up the lawn around the house as heavy equipment dug for the new foundation. I’m glad to have so many family and friends that reach out to help accomplish this huge task. Ralph is in retirement but was always the first to show up and last to leave. All of my friends made up a collection of framers, electricians, plumbers, carpenters, painters and general contractors - it was amazing to see them come together and start to build an addition to the house without any direction. I’m so lucky that they can work well together and do this for me and my family. We have so many people helping out that Jen sometimes jokes about having difficulty keeping up with the beer demand. She is right because at any one time we have at least four coolers going providing ice cold beer, juice and water.
We are going to try and finish the house by the end of the summer and hopefully enjoy the fall.
Winter '06
February 21, 2006
The fall went rather well. Picking up all the leaves was done with the rider mower. My wife helped out a lot. Even Madison once again wanted to be part of helping. At eight years old he was using the self propelled mower and doing a hell of a job. The handle was taller than him but he tamed it and showed it who was running who. I’m so proud of him.
In October we held a fundraiser, Halloween Harvest Fest ’05. It was great. My brother has been putting on a haunted house for years down in the Boston area for kids that would come from all around. He has handmade all the special effects, mixed with black lights, fog machines, moving parts, etc. It’s really a site to see. This year, my friend Jerry borrowed a cube van from work and helped us load everything up, drive it up to Maine where we met a lot more friends at the hall to set everything up. We had friends and family volunteer for decorations, tons the food, auction items, etc. We had a blast. Dancing, eating, drinking and spending time with the ones that you love and that care about me most. We had over 150 people show up, the bartenders had a hard time keeping the beer cold, but they made a killing. They said they had never quite had a party like that before and said we could use their place anytime. At the end of the night everyone chipped in again and it was like we were never there. I can never say enough good things about my family and friends, they are the best and I love them all.
The winter months this year weren’t bad at all as far as the weather goes. We didn’t get that much snow which made walking a bit easier. If I couldn’t snowmobile, I would rather not get snow. Although I do miss watching the kids go sliding and the dog trying to run after them in one foot of fresh snowfall. Madison wanted to learn how to drive the snowmobile this year. I told him no problem as long he gives me rides this year on the back and I can yell at him for going too fast. He’s a brave boy, sometimes too brave.
During November we also had a fundraiser with our local hockey team, the Lewiston Maineiacs. This was also a great time. The game went right down to the wire; unfortunately we lost in the shootout following overtime. We sold bracelets and t-shirts and had some raffles. It’s so nice to see people come together for a good cause. People I didn’t even know were coming up and hugging me and wishing me well. What a great feeling. Whoever bought a bracelet received a free whoopee cushion to get the other team and refs going. I had 150 seats reserved for family and friends. They filled those and then spilled into another section. Once again my support group comes through for me.
In December we went on a cruise for Christmas and New years. The boat stopped at the Cayman Islands, Isla Roatan, Honduras, Belize, and Mexico. This was a trip that my dad had planned two years ago but passed away on New Years Eve 2003. We wanted to carry out his wishes so my stepmother did a fantastic job orchestrating the entire trip to get us all together. My was my step mom Gillian, my wife Jennifer, Brittany and Madison, and my brother Mike had a great time and remembered my father and told stories about him.
The weather was fantastic, the food tremendous, and the kids really enjoyed it. The boat was huge and it did a number on my legs, but I said if I’m able to walk I’m walking. I rested for a few days after the trip. Plus I got to spend some time with Brittany since she still lives at her dad’s house. The only thing missing was my dad. He would have really enjoyed being with his family. I think he’d be proud of how my brother and I have attacked this new obstacle of my life together. I wish he were here to help as well. I really miss him.
January came and went quickly. We mostly laid low on weekends to rest up for the busy weeks. We would get some snow but a day later it would be like spring again and it would melt. Jennifer has been overly busy with school, work, taking care of me half the time and caring for Madison. A bunch of our woman friends have taken it upon themselves to cook us one meal a week to give Jen a night off to rest. Not to say that the men can’t cook. It’s just that the grills are put away for the winter. This has been a great help.
January went out with a bang as you’ll read in my next entry as I got a touch of stardom and rubbed elbows with Hollywood.
Valentines Day was quiet and relaxed. I bought Jennifer a big bouquet of wildflowers with an "I Love You" balloon, and a little something she could wear to bed that had a smiley face to help keep me positive. It works.
As far as my health has been concerned, I still feel great. My fingers have started to curl in, so I designed some gloves with the physical therapist to help with that. My arms have gotten somewhat weaker, and my legs shakier. I have a walker at home, an electric wheelchair at work but haven’t had to use them yet. My daily tasks have gotten harder, so I struggle more until I need help. The emotional rollercoaster still hasn’t taken a rest stop yet. I break down about once a week for a few hours with my wife. I still get angry but have learned to control it better. And mornings are still the worst part of the day. I told my wife that I wish I could wake up just one morning and look totally forward to the day. Not that I’m not happy to have one more day on Earth, because I’m grateful for that.
NBC’s ER Episode Body and Soul
February 2, 2006
On Tuesday my friend Judi Keene sent an email to all our friends suggesting we watch ER this week because the story would be about a man affected by ALS. I thought it would be tough to watch but then again it would be an opportunity to help spread the word about this terrible disease. I called my brother in Boston and he suggested that I get in touch with the local NBC station and ask them to use ER as the lead in to the 11:00 news stating that a local man has established a web site to help educate and find a cure for ALS. My brother wrote a three-sentence lead in and emailed it to me. I went to the NBC broadcast station in Maine to ask them to read the lead in and to my surprise they invited me inside for an interview to produce a segment for the evening news.
The news aired that evening with my story and NBC got so many positive responses that they ran the story for the next three days!
As far as ER was concerned I thought they did a terrific job with the story and the character Dr. Nate Lennox played by James Woods was phenomenal. I was so psyched about the portrayal of ALS and the recognition that it produced in the community that I sent actor James Woods a thank you note.
Would you believe it? James Woods called me AND left a message on our website!
- Watch Newscast about David’s ALS
- Listen to James Woods message to David
- Read James Woods comments on survivingALS.com
- Find out more about ER episode Body and Soul
"David, it’s James Woods. I got your lovely note and I posted a little response on your website survivingALS.com. I so much appreciate what you said and your kind thoughts and my hopeful thoughts are with you as well. I am very very touched that someone who has ALS would be good enough to take the time to compliment me. It really means a lot. I put my heart and soul into it and I’m really glad that you appreciated it. So please know that all my thoughts are with you. Thanks so much. Bye-bye."
Jen's Thoughts '05
November 21, 2005
First of all, I want to apologize for not writing sooner. This has been very hard for me to gather my thoughts and put them in writing. Sitting here I’m still not sure where to even start the process. I know for sure that I am heartbroken. Who’s to say what is fair and what is not fair? Me! I have that right. This is not fair. To have such a wonderful man in my life and something like this UGLY disease take him away!? Well not without a fight!
Dave and I first started out as good friends. A friend that I really could share my thoughts and feelings with and not feel silly or judged. Not a familiar place for me to be in, when it comes to friendships. A true friend. After about 7-8 months, I got that feeling in my stomach that just …. there’s no way of explaining that feeling. I’m sure some of you experienced that same feeling when a friendship turns into something more or you know when you look at someone for the first time and you were meant to be with each other. Well at that point is when our romance developed. We were married in 2001 at our home with family and friends witnessing our vows to each other and celebrating our next chapter in our journey of life together.
I have never had so many emotions go through me all at once. I get sad, angry, frustrated, fearful, and just plain sick to my stomach. Then there are the emotions of protection, wanting to nurture, courage and up for the biggest fight of life. (Those are just a few out of my many) The biggest part of having so many emotions, I never know which ones will come at me at any given day. I totally understand that Dave is the one that was diagnosed with ALS. I see his sadness, his fear, frustration, even embarrassment at times, and I see him ready for the fight. I would never take away those feelings. They are validated. However, I feel that others forget (and even Dave at times) that he has a family and we are also living with ALS and the family dynamics does get greatly affected.
As I continue to add to this from time to time. I ask only one thing from all my family and friends. I will try to respect you at all times and I know that you will try to respect me as well. I will try to remain honest and truthful. I also want you to know that I am in a different situation than you due to me living with Dave and seeing changes, the conversations that Dave and I have to plan for our future. So I ask…If you really don’t want the honest answer and are not ready for that honest answer then please refrain from asking. I will also try not to give to much information, because I am aware that not everyone sees or feels what I am going through and may not be ready for the truth. I will now sign off for awhile. My thoughts and prayers are with you all. Good health and enjoy what you have right out there in front of you, it may not always be there.
Summer '05
September 21, 2005
The first month after hearing the news, I was a basket case. The whole summer seemed like a never ending rollercoaster ride. Some days were good and others were bad. I was still doing mostly everything myself but I had helping hands everywhere. My brother was still doing research and setting up the website. My mother was doing research as well and running errands for me to save me time. My stepmother was cutting up veggies and fruit on alternating weeks for snacks at work to keep me eating healthy. My friends Jerry, Tim, and Norm helped me replace an entry door in the house that was rotting. Norm helped me put in a gutter to keep the new one from rotting. My wife is the biggest help of all. She does a lot of little things that I can’t do anymore, puts up with all my mood swings, but best of all, if I need a hug or a shoulder to cry on, she is there no matter what. That actually goes for all my friends and family, but I get more turned on from my wife. I’m lucky to have the friends and family that I have.
My brother came up to Maine early in the summer and brought his video camera. We shot some video for Extreme Makeover Home Edition because my house is nowhere near handicap accessible. It was sad at times but a lot of fun making it with the family. We still haven’t heard from them yet. We’re still crossing our fingers.
The worst part of every day was first waking up in the morning, without knowing how the disease progresses, you would worry whether or not you were worse than the day before. I would analyze any little thing while getting ready in the morning. Was I brushing my teeth the same way? Was it any harder to comb my hair? Was I going up and down the stairs with any more difficulty than before? All these things would make me worry and stress myself out more than needed. Stress would only make the symptoms worse than they actually were. Unfortunately, my wife takes the brunt of my bad days. If I get frustrated while having a hard time doing something, she’s usually the closest person for me to lash out at. I ask her not to take it personally and that I am just angry at the moment and that I will get over it, but it is still not fair to her. I’m sure it is hard for her to watch because she cares so much about me. Even though I am the one with the disease, she has a lot to think about and deal with also. I try to put myself in her shoes as much as I can.
As the summer progressed, my symptoms slowly got worse. Getting ready for work in the morning was getting slower and I was getting to work later. My boss and the owner have been very understanding from day one. They have always been fair to me. W.D. Matthews is a great place to work. You may not hear it very often from people, but I like my job. Walking through the door in the morning isn’t like a repeat of every other day. I also enjoy the people I work with. We have a lot of fun at work and outside the workplace as well.
Every Memorial Day weekend, for the past thirteen years, ten to twenty of my closest friends, male only, wives and girlfriends are not allowed. This is our one long weekend for just the guys to get away and relive memories and make new ones. Since it was all guys we would go to an island so that we would not bother anyone else on their long weekend. All we do for five days is fish, drink and consume large amounts of food. I am the only one who has never missed a year yet (I have a very understanding wife). This year I was worried about not being able to make it since we do rough it and it is usually cold, windy and rainy and I did not want to be anymore miserable then I already felt. After discussing things with my other friends, my best friend Matt Wolf called and informed me that they had all agreed that it would not be the same without me there and decided to have it at his house, which is on a lake. I had a nice comfy bed while everyone else was scattered on the floor, couches, or outside in tents. Once again, my friends pulled through for me. I will be posting pictures from these weekends once I get them scanned.
My family and I really didn’t get to do many extra curricular activities due to the fact that everything was still somewhat new with the disease. I was still worried about overdoing things and tiring myself out. We did get to attend some outdoor functions with our friends and had a few small gatherings at our house. We were able to share in the wedding of my cousin Elizabeth and her new husband Chris down in Massachusetts. We had a great weekend and they make a great couple.
At the close of summer I was happy that I was still doing most of my own work, especially being able to mow my two acre lawn that my wife insists we have. Although I can’t complain I don’t lift a finger in the house, except for the occasional cooking.
The University of Virginia, Charlottesville, VA
August 9, 2005
Tuesday morning Michael and I were up early and rented an SUV to drive from Baltimore to Virginia to meet with Dr. Bennett. Dr. Bennett was the individual that Valerie at Project A.L.S. had pointed out to Michael. We'd have to work quickly because we had to be back in Baltimore that evening for a flight to Boston.
Dr. Bennett was wonderful. We had tea in his office while we talked about his research, his approach, his expectations and what he thought were his next steps regarding R-Pramipexole on ALS .
Dr. Bennett is a proponent of R(+) Pramipexole that is a compound that protects neurons from the toxic action of free radicals, molecules that react with and damage the proteins and other components of cells. The body normally removes free radicals but in ALS there appears to be a problem with this defense. The investigational drug protects animals that model an inherited form of ALS. The best dose is sought in patients in this FDA approved study which began in April 2004. With ALSA-initiated funding, higher doses will now be tested for ability to slow progression of the disease. Safety and tolerability will continue to be monitored. The investigator will also test if this drug achieves levels in the patients' blood that are equivalent to those that have reduced death from oxidative stress of neurons grown in the lab (http://www.alsa.org/research/grant.cfm?id=709).
Dr. Bennett also offered to provide updates and education through our web-site once we got it up and running so stay tuned. His staff was very accomodating and very pleasant - we are planning a follow up with Dr. Bennett in the fall.
The Packard Center at Johns Hopkins, Baltimore, MD
August 8, 2005
I drove to Boston, MA from Greene, ME last night and stayed at my brother's place as we had an early flight to catch from Logan Airport Monday morning to go to Baltimore.
Once in Baltimore we grabbed a cab and headed straight for The Packard Center. Michael had set up a meeting with Ahmet Hoke M.D., Ph.D. FRCPC to talk about his research on neuromuscular diseases in general and specifically his study of a growth factor that can help damaged nerve fibers to grow back toward their original targets. We were also scheduled to meet with Dr. Jeffrey Rothstein who is the Director of the Packard Center and is considered the country's pre-eminent ALS researcher. During both meetings we gathered insight into the following topics:
- Insulin -like Growth Factor & Exercise help ALS (IGF-1)
- SOD1 getting more attention as a target protein helping ALS
- Also antibiotic minocycline calms microglial cells
- Myostatin retards muscle growth
We also met personally with the following people that provided lots of relevant data, information and guidance - a tremendous resource and organization!
-
Marjorie L. Centofanti
Assistant Director (Writes ALS Alert), Science Publications Office of Corporate Communications Johns Hopkins Medical Institutions
901 S. Bond St., Suite 550 Baltimore, MD 21231 410-955-8725
410-955-4452 (fax) -
Lora Clawson, MSN, CRNP
Program Manager for Clinical Research and Clinical Services, and Drug trials
410-955-8511]
lclawso@jhmi.edu -
Kathy Davis
Administrator for the Packard Center for ALS Research at Johns Hopkins
410-502-7677
410-955-0672 (fax)
ksdavis@jhmi.edu
Project A.L.S., New York, NY
May 24, 2005
As an overview Project A.L.S. provides funding for ALS research. Over the last six years Project A.L.S. has emerged as a leader in identifying promising scientific, medical, and technological approaches to understanding and treating ALS. Project A.L.S. has recruited world-leading talent to focus on ongoing investigations in genetics, accelerated drug testing, stem cells and cellular therapies, and identification of disease pathways - with historic results. Collaboration and innovation - the Project A.L.S. hallmarks - ensures moving farther and faster together.
Throughout my internet based research I had already identified over 40 experimental or trial drugs for treating ALS as well as many drugs and vitamin supplements that may or may not effectively slow down the progression of the disease. Everyone has an approach to treating this disease I thought. What the hell am I going to do? I can't do it all and who knows what works? Michael and I decided to narrow our scope and focus on the most promising clinical approaches, not as a total solution, but as part of an overall strategy to other standard and non standard treatments.
Michael traveled to New York on my behalf as I was at Mass General Hospital meeting with my physicians. Michael and I set three objectives for the trip to New York.
- Identify the most recent and promising approaches to fighting ALS
- Discuss optimum strategies for identifying trial drug programs
- Offer assistance in promoting ALS to drive contributions to research
- Coenzyme Q10 (CoQ10)
- Ceftriaxone
- Arimoclomol
- Pleiotrophin
- Myotrophin
As far as information The Packard Center at the Johns Hopkins appears to be the most thorough site for providing information on ALS and current drug trials. This will be a good source of information.
In terms of promoting ALS and creating awareness of the disease Michael also purchased the domain name survivingALS.com to develop our web site.
Next Stop - The Robert Packard Center at Johns Hopkins Medical Center
The Lantern Club of Boston, Boston, MA
May 12, 2005
After having begun to research ALS treatments I soon realized that because the ALS disease is so enigmatic that I needed to consult with experts as soon as possible to help narrow my focus. My brother Michael and our friend Jeanne heard that Valerie Estess, CEO and Founder of Project A.L.S., would be speaking soon in Boston. This was the beginning of my research that lead to many discoveries over the course of the summer of 2005.
Michael and Jeanne attended the speaking engagement in Boston. Michael met Valerie and told her about my diagnosis. To my surprise Michael told me that she mentioned my situation during her speech to the Lantern Club and even invited Michael to New York to talk about approaches for fighting and treating my ALS.
Next Stop - Project A.L.S
The Ride Home
April 5, 2005
After hearing the verdict, I had asked the doctor if anyone has ever made it through this disease. She told me that two people had through this hospital, and I responded that I’d be the third. After the appointment, my wife, brother and I went to a restaurant across the street from the hospital. I don’t remember talking about it much while we were there. I think we were all trying to process what had just been told to us. On the way back to our cars I started to worry about anything and everything. My brother told me not to worry about things and that we would get together soon and take care of things. That was a lot easier said than done. How does someone react after being told that you are most likely going to die? I am only 38 and I have a lot of plans for the future.
The 2 ½ hour ride home felt like it was the longest ride I had ever been on. My wife and I took turns crying as all the bad thoughts were going through our h eads. I’m surprised I kept the truck on the road trying to see through the tears while trying to be strong for my wife. Everything was spinning around inside my head. All the work at the house that needed to be done - Who was going to mow the 2-acre lawn? What happens if I lose my job? What about my health insurance? The house is not handicap accessible. How long do I have to get this done? I would have to organize all my personal belongings. What happens after I can’t drive? What’s going to happen with my wife, the kids? How will I support them? Every little worry had just turned into a big worry.
But worst of all, was the thoughts about the things I wanted to do with my wife and kids that I might not be able to do when I get older. My wife really loves the family home in Ft. Myers, FL. I was looking forward to be able to still bring her there after retirement and be able to relax just the two of us. I would like to take her places that she has never been to before that I know she would love. I look forward to our anniversaries; we’ve only had four. Madison is only 8 yrs old and there is so much to do with him, sports, school functions, dating, catching him sneaking out of the house like I used to in high school. I want to be there for all that.
On the way home there were family members waiting for the verdict also, so my wife, in between crying, made a few calls. The hardest one was to her daughter. At the moment she lives with her dad. I have always wanted a daughter. I finally got exactly what I wanted in a daughter in Brittany, and now I might lose her already. It was a school night and we told her we had to come by to talk with her, so she figured it out by herself that it wasn’t good news. We picked her up, went for a drive, and all had a good cry. I love her so much and I want to be around for all her activities, chase off the boys that aren’t good for her (in my eyes of course), visit her at college, and see her happy with a good man when she’s older, much older. All that could now be taken away from me, and I’m having a hard time dealing with that.
It was all too emotional to talk about it with my friends right off. I know how much I care about them and them about me. I had to write an email to most of my friends to let them know until I could deal with it better. This is a copy of what I wrote.
Dear Friends:
I hope everyone is doing well. Some of you already know the news, and to the rest of you I sincerely apologize for sending it via email, but it is the quickest and most convenient way at the moment to let everyone know what is going on. A lot of you know that I have been having some problems over the last 8 months with my muscles and somewhat with my speech. After many extensive tests at Massachusetts General, yesterday I was diagnosed with ALS (Lou Gehrigs Disease). I wish I could tell everyone that I care about face to face, but I am having a very hard time talking about this at this point. So once again I do apologize. I am planning on beating this with whatever it takes. I do not want anyone feeling sorry for me or giving me pity. After I get over these first few weeks, I want everything to go back to normal and keep a positive mindset so that I can get my body to take back control of what it lost. Any other positive thoughts or ideas I do welcome. The power of this group of friends or should I say family is greater than anyone has ever known, and can beat anything.
Everyone out there is asking what they can do for me. I appreciate it more than anything. But at this point there really is nothing, but trying to help keep me positive. I'm doing basically everything I always have by myself.
Jen is obviously having a very hard time with this as well. She's the best person I could ever have to go through this with. I love her so much. I know if anything ever were to happen, (which like I said is not going to) she is in the best of hands with all of you. She deserves it – and knowing that makes me one of the luckiest men around.
I'm sorry for the bad news, please pass this on to anyone that you know that I have forgotten, or if you noticed I have the wrong email addresses. If I did not include you it is only because I did not have a current address. There is no need to respond back to me.
Summer is coming and I hope to see you all soon with drinks in your hand and smiles on your faces, because I'm looking forward to it. Love you all.
Sincerely, Dave
The Diagnosis
April 5, 2005
My name is Dave LaFayette and I live in Greene, Maine. I'm 38 years old and I am married to a beautiful woman named Jennifer, who I like to call Jeni. She came into my life about seven years ago along with her three children. Chris, 20, who now lives on his own, Brittany, a very smart and pretty 15 year old, and Madison, 8, who likes to be called Mad Dog.
This site is going to tell my story of how I am living and most importantly surviving with ALS. I am going to share what I am doing to fight this disease through the medical field and alternative methods. I, along with the help of my brother Mike, who I would not have been able to have done this alone, have been researching this disease since the day I was diagnosed. Hopefully this site will help take some of the burden off of those who are newly diagnosed, currently living with ALS and also help anyone else who may have a friend or family member whose life has been darkened with this disease.
I will be updating the site regularly with more information, pictures, and stories of my research and travels. I believe that this disease can and will be beaten. I have a very positive attitude, and that can be the most powerful all natural drug in the world.. Stay tuned!
Let me preface this story to let you know prior to my being diagnosed with ALS, my wife had been through hell for 2 ½ years due to surgical complications. That turned into a week in the ICU, 2 units of transfused blood, 2 ½ years of pain, and loss of 2/3 of her right kidney. Her quality of life was non-existent. We finally had the problem taken care of at Massachusetts General Hospital in July of 2004. The doctors there were unbelievable and did what all the other doctors couldn't. We were finally living a normal life again. My symptoms started a month later.
My first noticeable symptom came in August 2004 when I noticed myself slurring slightly at a friends bar-b-que after drinking only 2 beers. I laughed it off for the time being but the slurring kept coming back now and then for no reason at all. After about a month, it got worse and I started to worry. I went to see my local family doctor in November. He said he couldn't tell if there was a difference in my speech but gave me a few minor office neurological tests. I passed all of them and he told me it would probably just go away, but to play it safe set me up with an appointment with a local neurologist. When I saw him, I passed all his tests and he also told me I sounded fine. The following weekend I was working outside in my yard. I filled up a wheelbarrow full of dirt, climbed up one small incline and by the time I got to the top, my upper legs had a burning sensation and I felt kind of weak. I finished spreading that load and I went in the house. When I laid down I looked at my right leg and it looked like worms racing around trying to break through my skin. I haven't stopped twitching since that day and over the next couple of weeks the twitching had made it to almost every part of my body. Now I was starting to get nervous. Of course I jumped on the internet, typed in "twitching" and "slurring" into the search box and the first thing that popped up was ALS. I had heard of it before because of the Lou Gehrig story but never really knew what the disease was all about. Now I knew. I didnt like what I read. I kept searching and found other diseases that had the same symptoms and thought was it possible that I could have ALS?
I was sitting at my desk at work watching my arms and hands twitching away pretty violently, it finally got the better of me and I thought my muscles were wasting away right then and there in front of my eyes. It scared the hell out of me. I finally ended up in the emergency room the next morning around 5 am. I couldn't sleep, the twitching was driving me crazy and the thoughts going through my head were making it that much worse. I had a CT scan of my head taken that morning which came out normal. My local neurologist got me back in his office that afternoon and by watching all the twitching, finally saw that it wasn't all in my head. He gave me a brief 20 minute EMG test and said there were slight abnormalities around my face that might suggest Myasthenia Gravis, but highly doubtful that it was ALS. I left his office feeling a lot better but his answers were not good enough for me. So, off to Massachusetts General Hospital again. I did my research and found they were rated 3rd in the country for neurology, so I made my first appointment in December 2004.
I was very nervous driving down to Boston that day. It was like I was now going to the experts and I was worried that something could seriously be wrong with me. The 1st doctor I met with was Dr. Merit Cudkowicz. She does a lot of work with ALS research. I went into her office and we started by just talking, but the only thing she noticed at that time was that my voice sounded nasal. She asked to look at my tongue from behind her desk and said that she saw some fasciculation's but said with ALS it would be much more noticeable even from that distance. I was starting to feel a little bit more at ease. I then went on to pass all the same office tests I had passed before, or so I thought. She had noticed a few weak points that I would never had noticed. Before I left that visit I tried to ease my mind by asking her if a lot of people come through here and end up leaving with a minor reason for their symptoms. She said "of course".
A few weeks later I was back visiting with Dr. Rabia Choudry, who works with Dr. Cudkowicz. I was sent to have an MRI of my chest to follow up on the Myasthenia Gravis. Again, that came back normal. I had some blood taken that day to test for lyme, which came back negative. I was then scheduled to have an MRI of my brain back at home to check for possible MS. That also came back normal. All these tests coming back normal, I was thinking "this is great". But in the meantime I was still twitching all over. Once in a while, maybe once a week, something would come over my whole body. It was very hard to explain to anyone, but I would just feel weak all over. It felt horrible; I wanted to crawl out of my skin. Certain noises would intensify the feeling, dogs barking, kids yelling, I wanted to curl up in a ball in the corner and just go to sleep to not have to deal with it. I also didn't want to be touched at all during these episodes. It would send a very unpleasant feeling right through me. My poor wife, trying to comfort me and all I did was snap at her and push her away. I would finally get to sleep and as quickly as it started, it would stop. I would have a hard time remembering how awful the feeling was, until it came back the next time. The worst one I had lasted three days, Friday morning through Sunday night. I barely slept, lost four pounds from not eating and stress, but finally fell asleep around 4pm Sunday, woke up around 7pm like nothing ever happened. I got up, ate three large sandwiches and went back to bed. This hasn't happened since January of 2005.
Since all my tests were coming back normal, I was scheduled for an EMG test on January 24, 2005. I will never forget that date. That was the worst set of tests Ive ever been through. I wont go into detail, but it involved a lot of shocking and sharp needles. Even after these tests the doctors couldn't figure out was wrong. The readings were inconclusive. I went back two days later for a single fiber EMG (more needles) which showed more abnormalities but was inconclusive as well. While I was there they administered a Tensilon test intravenously, which I passed and which would most likely rule out the myasthenia gravis. I was kind of hoping for it at this point. The next step was day surgery a few weeks later for a muscle biopsy. That was not that bad. You are awake during the procedure, they use a local anesthetic, you don't feel a thing. After a 1 inch cut into my shoulder, the doctor removed a piece of muscle about the size of a pencil eraser. It lasted about twenty minutes and we laughed through the whole thing. After this point the sleepless nights and nerve-racking days thinking about "what if?" only got worse.
Sorry, but I am going to go on a tangent. Despite all of these tests, I have never had a better experience at a hospital. All of the people that I dealt with at Massachusetts General Hospital are the most upbeat people I have ever dealt with. You walk in there nervous, they treat you like you were their best friend and you walk out smiling. Everybody is nice, they are always smiling. They make you feel like they are actually there for you, the patient, not just the paycheck. It must be a prerequisite to get hired there. What a pleasant change of atmosphere for a hospital.
At the next office visit, the results were back from the biopsy, I found out that I had a neuropathic problem, which I knew wasnt good. But there were diseases that fell into this category other than ALS that were treatable. I was hoping for one of them. My doctors considered my case very difficult. Nothing was pointing toward any specific disease. The next visit was going to be a case study and hopefully a good diagnosis. I was going to be in front of about 15 people, including the top ALS researchers, doctors, interns, etc.
My wife and my brother came with me that day for the final verdict. We were all in a conference room and Dr. Robert Brown Jr. was the doctor that questioned me on how everything started and then examined me again in front of everyone. Again, they made it a pleasant experience. A few times I even got all of them laughing. I think Dr. Brown was impressed at how much I had learned from doing my own research. He said I could probably get a job there at the Hospital. I told him he had to cure me first. After about an hour, they asked the three of us to leave the room so they could discuss the case and they would come back and get us. We were in the waiting room approximately five minutes when my doctors, Dr. Cudkowicz and Dr. Choudry came back out to get me. All that was going through my head at that time was that was too quick, the jury wasn't out long enough.
Instead of going back into the conference room, we went back into Dr. Cudkowicz's office. All of us sat down, and on April 5, 2005 I was officially diagnosed with ALS - Another date that I will never forget.
Next Stop - The Ride Home & Life after the Diagnosis.