From Amber:

Friends and Family 😊
First off, we would like to thank you all for your your kind words, well wishes and endless flood of support for my father!! It truly means alot to us to know how much he is truly loved!!! ❤💙❤💙❤
As you know all know this battle is far from over and as this disease progresses it will require more appointments, therapies and follow ups. A doctor's appointment can put a damper on anyone's day let alone multiple in a week 😕 and with his upcoming G.I. surgery he will need help recovering. As we all know soups, stews and making full meals can be time consuming.
To try to make his and the rest of the Salzburgs' life a little easier we are asking for volunteers to bring/send meals for them a few days a week. This link allows you to choose a day to volunteer to bring them a meal. If you would like to sign up for a day please login with the security code "6148".
Click on "Tom's ALS Battle" for all the info and click on the day needed for the information on that day and if you have any questions feel free to message us👍

https://www.carecalendar.org/logon/287635?fbclid=IwAR2rBkWgodo4jU_A_JGEF_dEWQa0BD87ctAWTMd4zK7_urWug23UO-MDdSM

2/19 Update

It’s been a whirlwind of emotions since Tom stepped onstage for his “last hurrah” last weekend with Bad Medicine. For 17 years our lives revolved around the band schedule - heck my kids grew up knowing most family vacations or weekend getaways were determined by a band road trip! We saw a lot of places in 17 years we would have never traveled to otherwise and the kids always looked forward to where our summer adventures would take us with the band! Tommy Jr has slid right in behind his dad filling in when dad couldn’t play and Amber and Ash have always been dads biggest cheerleaders front and center at fests and fundraisers! 

 

Tom had hoped to do a last show when he was feeling a bit better but sadly as things have progressed rapidly he knew he was at a point where there would be no improvement so it was a now or never decision.

 

With just a weeks notice that Tom would step onstage the venue was filled with family, friends and fans and it was an amazing sendoff from the band mates we call family! The band honored Tom and his 17 years with them - and the crowd was chanting TOM TOM TOM! It was definitely emotional overload for all of us - and we are grateful to everyone’s support and apologize to those that could not make it on such short notice. 

 

It’s been a wild musical adventure for 35 years at Toms side for shows  - endless road trips and laughs and meeting some great people, musicians and their families.. and making the most of dive motels and awkward situations along with some truly amazing memories and some pretty “stinky” stories too! 

 

I have always loved watching Tom play drums. As someone who can barely chew gum and walk at the same time it amazes me to watch all limbs going and the pure joy in his face when he takes the stage. It doesn’t matter what happened in the hours before a show or load in was a disaster - once he gets behind the kit the only focus is his passion and making music for those that came to see him..

 

He has always said “play every show like it’s your last”.. and it’s true - you never know when it’s your last show and each and every person that comes to see you perform could have done 100 other things or gone to any other club or fest.. but they came to see YOU so give them the best show possible!

 

I love him unconditionally and we have survived 35 years together in the music world - rearranging our lives completely week to week when shows come up - rearranging vacations, flights and booked birthday and graduation parties but there are also so many memories tucked in our hearts surrounding shows and road trips - I will definitely miss seeing his eyes light up on stage and his transformation to the superhuman who never seems to miss a beat and glows with so much energy when he’s up there doing what he loves.. I am so proud of him to have the courage to get up there one more time - to give his family, friends and fans one more show - with our son holding him up and helping his dad every step so he never misses a beat.  Tommy has always idolized his dad. The Dueling Salzburgs has been a treat In recent years as my boys perform together on one kit for a song and make magic happen! Tom is a man of courage and I am proud of both of my boys for their teamwork and their love and respect for each other to get them both thru a very difficult evening.. we are family - we hold each other up when one falls (sometimes after we took the picture first !) and together we are SALZBURG STRONG.

 

The end of an era that just shouldn’t have had to end - somehow, someway there has GOT to be a cure for ALS some day soon.. EFF YOU ALS!

Update from Kelly 2/3

Woahhhh we’re halfway there ..🍾🎼🎤🎹🎸

 

Halfway done with infusions for this round .. after day 2 mess it’s been going well and the gravity bag gods have been kind to me! 

 

We have noticed it’s definitely infusions that make Tom so tired .. not sure why but they do.. but hopefully they are slowing the progression so we can have more time for new adventures! Last day is Friday so it will be a happy Friday this week for sure! The nurse had many issues replacing his IV yesterday - 3 times because veins kept blowing but Tom is a trooper and says it’s nothing compared to the EMG so he just deals with it (wayyy better than I would! Lol)

 

We got out for a bit Sat nite - it was GREAT to see some friends and be out of the house and it WASNT for a doc appt! 

 

Yesterday when I let the dog out and it was so beautiful outside my first instinct was to wake Tom to take the bikes out for a ride - and then the realization those impromptu adventures are gone from our lives.. but we have a new life now and a new way of finding adventure as yesterday ended up being a whirlwind of friends stopping by at the salzburg sanitarium for some quick visits and much needed laughs and a then a feeding frenzy for our family with some great friends taking over my kitchen (in their pajamas - just like us!) to cook us a super bowl feast! We’re still in a food coma! It was a fun day hanging out in our Pajamas and filling our bellies and hearts with food and love! 

 

Not a big football fan but did get to enjoy a few commercials and the boys enjoyed the game surrounded by FOOD!

 

Too crazy to think about taking pics with everyone yesterday - but I did take a pic of my new favorite wine that came with dinner!

 

Happy Monday!

Update from Kelly January 30th 2020

Infusions day 2.. not enough swear words to describe our morning!! Up early making breakfast and blending foods - good nite sleep and we were going to combat the morning activities early!! Aaaaand nothing but issues with the gravity bags today (connect to tube, notice it’s not flowing, add warm water, STILL no flow..play with lines and shake bag some more, disconnect, empty into a blender cup and pour into a NEW bag, start tube feeding again .. still not flowing .. repeat process until I’m ready to toss the full bag of food out the window!) finally gave up and put it on hold well over an hour later - only to blow the IV line immediately with saline (Tom is getting used to the pretty bumps full of saline under his skin at this point 😂) call nurse in tears as she is off today for a family funeral .. try to find assistance (bad timing for me as always! Both IV resources I have were unavailable) .. finally got breakfast running in his bag by squeezing the crap out of it, nurse drives from north side amidst getting her kids ready and printing pics for a wake to come replace IV AND WERE FINALLY DONE INFUSING AND BREAKFAST 4 HOURS LATER! whew !! Except NOW it’s time for lunch .. repeat of morning disaster (I think there’s an issue with the gravity bags I just had delivered)  finish lunch feeding with a few more tears of frustration and it’s then time to get ready for therapies scheduled today..uhhh.. it’s now 1:30 and I haven’t showered or brushed my damn teeth ! Ashley to the rescue .. moms Going back to bed and she’s taking dad to therapy appointments.. it’s NOT EVEN MONDAY! but - on a good note.. Tom was a trooper as he sat for hours in the recliner with all the madness going on around him! He even got a quick nap in since he was unable to get up with all the tubes and ivs connected for way too many hours and the nurse caught him snoring 😂 I even asked him at one point of this was just a  joke and someone had a camera to see how frustrated I could get in one day ? So.. I’m exhausted - ash and tom are off to appointments and it’s NAP TIME for me! It can only get better from here right ? Lol!! how was your morning ? 😂😂😂😂😂

 

#salzburgstrong

#frustrationoverload

#fuckals 

#isuckativtherapy

#gravitybagswillbethedeathofme

Update from Kelly January 3rd 2020:

The new year seems to be bringing some positives! Tom seems to have a bit more energy now that we’re adjusting to the “new norm” with the peg tube and he’s getting much needed nutrition... we had a low key and fun NYE; a beautiful sunset on New Year’s Day .. and FINALLY after the scramble of the century today - we were able to schedule out patient infusions at the infusion center for days 1-3 and coordinate delivery of supplies and home health services for at home infusions for the remainder of round one all within an hour of the docs approval at the hospital today! (We are grateful to the Infusion center who took mercy on us after our delays and the scheduler who crammed us in TODAY)

I started making calls the minute we got the OK today in the office and I wasn’t leaving the hospital until all was coordinated ! He FINALLY started infusions today ! I wish we could have started this months ago but we are HOPEFUL we are headed towards some better days ahead with some strength now that he’s getting nutrition and calories; and slowing the progression of this damn disease with Radicava Infusions! HAPPY NEW YEAR!

Update from Kelly 2/19

 

So.. lots of updates but i will keep it short .. it’s been a show lately. But we still find humor in our house most days because that’s how we roll! Lots of upheaval with a new electronic bed so Tom can sleep more comfortably . (And clearing out a bedroom of 25 years of crap in a day 😂) add an upcoming bathroom remodel to make it accessible for Tom (clearing out a bathroom of 25 years of crap too!) makes for a whole lot of insanity when you add in all the doc appts and 3 therapies 3 times a week . But today - after some time researching and debating.. We did a “thing”.  We are cautiously optimistic but we bypassed a clinical trial - and went for a Hail Mary with an alternative medicine clinic we have been going to. He “may” get some temporary energy and slight improvements with an Exosome infusion. There is no real data on ALS and/or  any improvements for ALS patients using it but we decided to try it - who knows ! It seems to work well for inflammation and joint surgeries so It may work or it may not but we have nothing to lose at this point so what the hell! Travel for a clinical trial was not optimal for us so we were able to purchase the medication thru the alternative medicine facility..

 

Lots of things going on in our house and lives these days so thanks to everyone who has picked us up when we fell, helped with the insanity going on and have made sure we are fed and caffeinated and even scrubbed the bathroom !

 

We hope for some positive results in the next few weeks so stay tuned .. and we would never be able to pursue any home modifications or alternative medical options or even keep up on medical supplies and supplements without everyone’s help.. THANK YOU! 

 

#salzburgstrong

 Update from Kelly 2/7

It’s been a helluva two weeks here at the Salzburg Sanitarium! But thankfully today was the last day of infusions this round - I truly didn’t know if we would survive it !!! Infusions definitely drain his energy and we have noticed he is more weak when on infusions and hopefully he will pep up again until the next round in 2 weeks 🙂

 

Thanks doesn’t seem enough for those that we called upon for a whole lotta help recently - from flat tires to immediate small home modifications to assistance with feedings and errands to replacing blown IV’s when the nurse couldn’t get here and everything inbetween! It seems life has been a shit show the last 2 weeks but hopefully we get some quiet time and easy days for a bit now - and can catch up on much needed SLEEP and a whole lot less stress! 

 

THANK YOU!! 

 

Those that may have seen Toms post - he announced his last hurrah with Bad Medicine tomorrow! It will be bittersweet seeing him onstage with the band members that have been such a huge part of our lives for the last 17 years so saying good bye will be hard - performing anywhere from 4-12 times a month has been the norm for us for the last 35 years so it’s definitely been a big adjustment here as we both sit here looking at each other every weekend instead of us both running in different directions and him playing every weekend with one of his many bands - or .. more than one band in a weekend !!

 

Just so those that haven’t seen tom in a while are aware - there hasn’t been any miraculous improvement in Toms health - unfortunately just a rapid decline .. so Tommy Jr will actually be filling in for dad on drums for the show and Tom will only be playing a slow song or two with Tommy Jr at his side.. Tom no longer has the agility or strength to perform another show so the dynamic duo will be giving it their all and tossing a big middle finger to ALS as father and son team up to make this last hurrah happen not just for for Tom - but for everyone who comes out to be a part of it! 

 

Many thanks to all who have supplied us with love and support and meals and groceries and COFFEE for the last 2 weeks!

 

Here’s an “early years” photo when the band returned home from a show in Japan.. our kids are all grown adults now !! 

 

#salzburgstrong

#fuckals

Update from Kelly 1/29

Infusions started again today- let’s hope my skills are improved this time! Lol! But Toms a pretty good sport even when things go awry! Not much change but hoping this works to slow the progression. We seem to have finally mastered blenderized foods and getting closer to a routine and then - life happens with appts and deliveries and craziness and the schedule goes out the window again! Thanks to everyone for the visits and groceries and meals! (And a million other things so many are doing!) you are all making our lives a whole lot easier and we appreciate it!

Update from Kelly 1/20/20

It’s been a while! Lots of ups and downs and 14 days straight of infusions kicked our butts here!! I have zero clue why insurance thinks it’s a good idea for a family member to be priming bags of “liquid gold” and running an iv! BUT! he survived as did I lol! No giant air bubbles infused into his vein (we narrowly escaped that a few times!) and we only blew one iv - it was interesting to see his arm swell with saline going under the skin instead of into a vein!! The schedule was exhausting for both of us as the morning feeding and infusions took about 3-4 hours of our day.. 

 

We have finally caught up on sleep and getting into a new routine of me working from home and giving him meds and feedings - we are off schedule more than on (big surprise! Lol) but we’re making it work .. 

 

We have been well fed and it’s great to be able to blend the meals for his feedings since I was never a good cook to start with and certainly don’t have time anymore! So many thanks to all of you for all you have done! The meals have been delicious and incredibly helpful! More than you know!

 

Radicava is supposed to slow the progression. It’s not a cure but he seems to be doing better with a bit more energy now that he’s getting calories and staying hydrated! I have become a blended food master with some help from friends and some high proteins to add to his meals!

 

Communication device came last week - our niece and our kids have had more fun than tom with some new and very inappropriate phrases now saved in his device! It adds the much needed humor into our lives when the robotic voice is constantly telling me “I’m hungry” or “what’s taking so long” as i am blending his meal - and the inappropriate phrases make us all burst out in laughter !

 

Infusions start again next week so I’m hoping this round goes a bit easier for both of us! 

 

Thanks to everyone for all your support! You are all amazing!

 

Love, Kelly and Tom

Update from Kelly - December 11th 2019

 

So In recent events - when it rains it pours (Story of our life haha!) but on the positive side we have a surgery date scheduled next week for Toms GI tube and we’re hoping he will regain some energy and strength! We have also made progress and of course had some roadblocks with scheduling his infusions now that Radicava has been approved - but we are hoping we get all settled by the end of the week and he should start infusions next week in conjunction with his surgery!

Our employers have been fantastic with all that has been going on as the hits kept coming left and right lately so we are VERY grateful and blessed to work for the people that we do and we have some amazing coworkers who have gone above and beyond to cover us at our jobs!

Our girls have stepped up and have been helping out tremendously as the boy was on the west coast chasing his dreams.. exactly where he should be!! I’m proud we raised some pretty good kids who have been there for us every step of the way!

many thanks as always for your prayers and well wishes and gift cards and the meals!! Our families and friends have been collaborating and planning and I’m happy to say things are moving along for the benefit they are working on! We are truly surrounded by some pretty amazing people! 💕💕

Update from Kelly - December 5th 2019

 

It’s been a crazy few weeks since we returned from Boston with some health issues, many doctors appts and the Thanksgiving Holiday along with some special surprises from some pretty awesome friends ! Tom finally got the opportunity to meet one of his favorite musicians and the kids and I were able to be with him and share the magical moment !!

Our insurance FINALLY approved Radicava infusions but we have been waiting for a surgery date for his GI tube since that is the priority right now. The doctors believe he will regain some strength and feel a helluva lot better when he is getting enough calories and nutrients! Man cannot live on soup alone! So it will be a very busy month in our house!

Thank you to everyone for the cards and well wishes and thoughts and prayers! We are grateful to each and every one of you!

#salzburgstrong

Update from Kelly - November 20th 2019

 

We spent the morning with our new friends at ALS TDI.. they are a non profit research facility dedicated solely to finding a cure for ALS..Tom has been working with them tracking activity and reporting monthly on his progress for their database. They are kind and AMAZING! Their research team works 24/7 to find a cure.. Tom submitted his blood sample for their research and we were able to tour the facility and their lab and meet some of the team that works tirelessly to find a cure. We left there with some HOPE! Tom was glad we made it here and has a glimmer of HOPE they will find a cure in his lifetime (and we met some awesome people as well!)

Update from Kelly - November 19th 2019:

We’re headed to Boston today and have appts this week at Massachusetts General Hospital ALS clinic for another opinion and to seek treatment options and possible clinical trial options . Unfortunately the brainstorm trial was full as soon as they opened it - but we have some hope this will be approved as a treatment in the US soon!

Here is a link to a story about this treatment that gives so many of us HOPE!

Update from Kelly - November 22nd 2019

We’re headed to Mass General for a day of appts .. Here’s hoping Tom qualifies for clinical trials that may help him (and others!)

Matt Bellina has championed for ALS patients to receive right to try treatments - we are inching closer to a cure and the availability of trial treatments to ALL! 💖

 

A very long day at mass general but we leave with some HOPE!! While the stem cell trial is full they have other clinical and research trials available and we have much to digest! We have started many vitamin supplements and the Deanna Protocol And Tom is on high doses of antibiotics right now as we await many lab results from the Lyme disease specialist .. the doctor at mass general agreed everything we are doing to sustain a quality of life are all the right things - herbal/vitamins/modern meds all combined. And we should continue to fight for Radicava. HOWEVER with many clinical trials you need to stop all meds and supplements .. is it worth possibly receiving a placebo and eliminating meds and supplements known to help? Lots of paperwork to read and decisions to be made .. all in time - not today!

We did however agree to some research trials .. tom donated 10 tubes of blood to assist with their research and we may be going back based on his labs for some more research trials.. interesting turn of events today ! Mass general NEEDS “healthy” blood donations for their research so they have baseline markers to reference .. it was a no brainer - I’m HERE AND YOU CAN TAKE MY BLOOD AND IT MAY HELP IN YOUR RESEARCH TO FIND A CURE?? I would give both my kidneys or any organ if it would save him - you just want my blood ?? DONE! once the labs are processed we may be coming back for mri of Brain and mri of spine .. again they also need healthy volunteers for baseline and reference .. welp- where tom goes I go! I cannot guarantee results on my brain scan 😂 but I’m willing and able !

There are many things coming soon they hope to have approved and some platform trials where university of Chicago has been an approved facility so we don’t need to travel to Boston for those .. there is also an oral dose of radicava they are trying to get approved and if they need more trials on it - were in!

There’s a lot of qualifying factors with clinical trials people don’t understand . And many of the trials are for limb onset not bulbar onset like Toms.. but the research team at mass general will help is filter thru the ones they offer.. whew !

We left the hospital sad the stem
Cell trial is full but with some HOPE with all they are doing with research !

We hope to come back again and participate in some research trials - even if they don’t help tom in his lifetime he can help them find a cure so no one else has to suffer the same fate !

We were treated to a delicious dinner in Boston with the best seafood we have ever had !

I believe in angels and definitely believe in signs .. let’s just say Sarge has sent a sign or two and Steve has also sent a sign! It’s comforting to know they are here with us on this journey and making their presence known!

Our tired old asses were planted in the hotel by 7pm and hope we get to see some more sights tomorrow before we head home!

#salzburgstrong