You are invited to join the family at a Memorial Service in celebration of the life of Scott Spicuzza, who passed away on April 24, 2014.
It will be held on Sunday, June 1st, promptly at 1:00 - 3:30 p.m., at the M.R.C.C. Banquet and Convention Center at 23401 Mound Rd., in Warren Michigan.
To acknowledge Scott's passion for hockey and love of life, everyone is requested to wear a hockey shirt/jersey if they have one or if you don't, at least something bright and cheerful - no black please. Let us all feel the glow of Scott smiling down on us as we gather to celebrate him and share memories of the times you had together.
In order to enable us to accommodate everyone who wants to attend, please let us know if you will be able to join us for dinner following the service, at approximately 1:45 p.m.
Number Attending ____
We would appreciate a response no later than Saturday, May 24th.
If you don't have my email or are not on FB with me please put a comment on this page if you are attending and how many to give us an accurate count.
If you think there is someone who I have missed on the invites please pass this along to them.
I hope that this website, the facebook page, and anything else we have done will have impacted you in some way. To be able to share this information and create an awareness for this devastating disease is such a comforting thought when thinking about how our life is. I hope that by being able to share our experience will help to bring more research and funding towards this disease to stop other families from feeling the anxiety, sadness, and anger that I have felt.
It has been quite a while since we have posted anything, but Scott is doing as well as to be expected.
We have learned the hardships that this disease brings and with the help of others that are in the same position as us, we found the Care Calendar. It allows people to go in and see what I going on with us, stay updated, and help out if they so please. I will literally be sending this to every single contact I have, whether you wish to help or not, I hope that you can look at it and know that this type of help exists for people, if you are to ever come across friends or your own family that needs this kind of help.
The HELPER logon is used by family and friends
that would like to sign-up to help a loved one.
Scott got his Tobii computer on Wed. If any of you got to see the news report on channel 4 the other day it explained a bit about it. This can be a more permanent fixture on his wheelchair for him to be able to communicate plus it will do just about anything his normal laptop will do. Pretty amazing.
Scott did have his first outing by himself this week too. He went to get his haircut, so be on the look out because you never know where you might see him zooming around, and when I say zooming, his chair really cruises.
I heard it was Gratitude Day! So in honor of that I would like to thank everyone who has donated money, their time, help, items, information, love, friendship and support to our family this past year. We are so very blessed and grateful for all those people in our lives.
Having a bowling fundraiser Friday, October 11 to help pay for van, additional equipment, possible bathroom remodel and care for Scott. Lots of baskets, 50/50, bucket of booze. Includes 2 games, pizza and pop for $20 pp. Coach tote bags, Benihanas cert, Bavarian night stay with 2 dinners, cert for Macomb performing center, zap zone party, The Melting Pot, Andianos, Starbucks, Kona Grill, golf cert, margarita maker, martini maker and so much more.
Contact me thru FB, send me an email or send money to me for tickets. Need to set up teams and get head count, so the sooner the better. Checks made out to "Scott Spicuzza Fights ALS". Thanks to everyone who has already purchased tickets! It's gonna be alot of fun.
Hey everyone, we finally have a van! It's the one in the picture I posted last time. Very nice for a 2004, and surprisingly easy to manuever for me! Biggest issue is that I am short and need to raise the gas pedal. But other than that it is good. Ok except for the stupid person that parked next to me at Costco in between my handicap parking space and the next handicap space that was already occupied! Hello????? I need 8 ft for ramp and Scott to get off ramp and this stupid person parks next to me. When he came out he thought he was there before me. Hello again....the ramp is positioned at your window and can't go down any farther and Scott is in his wheelchair outside the car! I don't think you parked before me. Some people. The van even has a sticker on the window stating it needs 8 ft for ramp. So after parking it for about a week or so, there isn't many handicap parking spots, even van accessible ones that really work. I maybe able to get Scott out of the van, but if someone parks next to me, he can't get in. Definitely going to the cop shop to see what kind of answer they will give me on where I can really park, without parking in the back 40 to get a wide enough parking spot. Everyone, please take a look if you park next to the handicap spots and there is a van parked there. You may have blocked the person in/out.
Let me tell you, it has been an experience all around!
Scott also got his wheelchair that cost more than the van and anyone of our cars we have ever purchased! boy oh boy but is it nice! Very sweet ride for him. All of us are adjusting to this new phase in all this, but this chair makes life so much easier for Scott! That is the most important thing.
Last Saturday, Jake's hockey team the 99 Jr Oakland Grizzlies and Coach Dwayne from 99 AAA Grizzlies hosted a fundraiser at JD'S Key Club in Pontiac. What a great time we all had, especially Scott. We had never been there before. It was great seeing/talking/hanging out with all the people who came to support us. We are so very grateful for their friendship, love and support. It means the world to us.
Ok, so it's been a month since I last updated this. Unfortunately Scott is getting weaker. He is now using a walker to get a round the house, but the good news is that Scott should have his wheelchair by end of the month. He jokes that his wheelchair costs more than any of his cars.....See, he still is a smart***. As usual, each day is a new struggle or challenge with many more to come, but Scott still doesn't complain. He is looking forward to Jake's hockey season with the 99 Oakland Jr Grizzlies, the Red wings, and then Renee's bowling season at Stevenson. He is on the computer/tablet daily so if you want to you can contact him or texting is fine too. Still trying to get him on facebook but he keeps saying no! Lol.
We did find a van thanks to my in laws. We are hoping to get it within the next 2 weeks so he has it when he gets his wheelchair. Hopefully I can get the picture posted thru my tablet. With everyone's generous donations we are able to put a down payment on the van.
We are also needing to find someone who can do some bathroom remodeling, so if you know someone, please let me know. Hopefully just to change our tub situation to keep the costs down.
This past weekend, Scott's former workplace Yanfeng hosted their golf outing in honor of Scott and raised money for him. We were invited for a wonderful steak dinner and everyone stood and cheered when Scott came in. They have been so caring and generous even though he is not working there anymore.
Will update with JD's key club fundraiser that Jake's hockey team is putting on for us Sept 6th plus the bowling fundraiser my friends and family are throwing on Oct 11th. Save the date!
Again remember that even though physically Scott is changing, mentally and spiritually he is the same person. He may need more help obviously to do things, but he is still the same person inside.
Once again, we are so very blessed with everyone's generous donations, help and prayers. Please keep Scott and us in your prayers as we continue daily in dealing with all the challenges we are faced with.
Yesterday we went for the wheelchair appointment. Considering that Scott has to get one, we will know for sure next week if we will be able to get the newest model which has a few more upgrades available. Scott even picked out viper blue as his color of choice. This motorized wheelchair has so much to offer for comfort and capabilities for Scott's daily use. It will be so much better for him for daily use of getting around and won't tire him out. Thànk God that our insurance will pay for most of the costs. There are a few things that we want additionally on the wheelchair that will come out of our pocket, but Scott needs these extras even if the insurance company doesn't deem it necessary. Overall the experience was a good one especially knowing that this will make Scott's life easier even if he only uses it outside of the house at first. I think Scott was pretty impressed too.
As always, we take one day at a time and we are very blessed to have the love and support of all of you with your prayers and donations.
Remember that Scott may not be able to communicate well with his voice but you can contact him thru texting and email. He is still the same person even with all these physical challenges he faces.
We wanted to thank everyone so far that has donated. We are very thankful and blessed to have so many caring and wonderful family and friends rally around us at this difficult time.
Also, Scott has been approved for his short term disability of 13 weeks. Yeah!!!! After that will be another challenge waiting for SS disability which will take at least 6 months. But one day at a time, one day at a time......
My dad was always fun and exuberant with life. In Decemeber of 2011 , my dad started to show signs of stress on his hands. At first we thought he had Arthiritis, one thing led to another, and after many tests, some painful, some not so much,the only option was ALS. My dad was diagnosed with Amyotrophic Lateral Sclerosis in early January of 2013. We have tried many countermeasures hoping that this was not the case. Hehs been very light hearted and positive about this, but in the past few months he has deteriorated to the point that communication is difficult as well as mobility, in reference to his hands and legs. The main point of trying to raise money is to try and purchase a van that has full mechanics to move a wheelchair or to get more advanced technology that will allow for better communication or easier functioning, neither of which comes cheaply. I know the chance to keep a relatively normal lifestyle for him would be the best thing for his current situation, especially watching Jake play hockey and watch me bowl. Anything that can be donated is helpful and everything is appreciated.
I don't have a set goal,I just want to be able to see some happiness and easiness for my dad's life, so every bit helps. Thank you for any and all contributions and please spread the word.
This is an extra fundraising opportunity on top of the bowling fundraiser that we will be putting on October 11th. Don't feel pressured into anything. Everything even thoughts and prayers are appreciated.
Hi Colleen, We would love to attend the bowling fundraiser, but cannot due to prior commitment. Our prayers and thoughts continue to be with your family and please do not hesitate to contact us if there is anything you need. We're right down the street and can be there quick! :)
-Angie Gareau, Mike Sekich and family