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Saturday, September 8, 2012

Bucket List: Skydiving? CHECK!

August 13th was my 62nd birthday.  We all went to dinner - Gerrí and I, Tom and April, Kristin and Ian, Lindsay and Brett, and Joel and Jordan.  I got to choose the place and I chose Cafe Rio.  I really like the Pork Tacos!

My kids gave me a gift bag with a piece of paper in it.  That piece of paper just happened to be a certificate for Skydive Utah at the Tooele Valley Airport.  Earlier this summer, we were at Lagoon and I tried to get some of these kids to go on the sky coaster with me.  Our day was about over and the line was very long, so we decided not to go, but that led to a bucket list discussion.  One of the group asked me if I had any interest in sky diving.  My answer was yes, but I thought that was the end of it.  Obviously not.

So, today was the day that we chose to go make the jump.  Not everyone in the family was interested in jumping out of a perfectly good airplane.  When I was flying my ultralight, I could never get Gerrí to go up with me.  She has a thing about heights and flying in airplanes without doors.  Tom, April, and Brett came to observe.  Kristin, Lindsay, Joey, and Jordan all decided to take the plunge. Because we all decided to take a video, we ended up on two different flights - a camera man for every one of us.  Joey and Jordan went first. Kristin Lindsay and I went on the next flight.

The link provided with this photo is my YouTube video of the event.  You can see Lindsay jump first, Kristin next, and I was the last one out of the plane.

http://youtu.be/1tUYeGGFaAo
So before you click on this - let me explain why some things look kind of weird.  When my trainer and I jump, I have my head back and my hands in the chest straps of the harness.  It looks like I don't want to look down, but actually, that is what they instruct you to do.  I wanted to be able to see the event clearly, so I had my prescription sun glasses on.  They gave me goggles to go over the glasses, but I found that when you are falling at a rate of 110 miles per hour, it is a bit difficult to keep those goggles in place.  Also, at the beginning of the video, I sound a bit drunk.  That is the ALS talking.  I did NOT take anything to calm my nerves - I promise!  I really was not nervous.  (What do I have to lose?)

While it only takes about 10 minutes for the plane to reach an altitude of 13,000 feet, and it only takes a couple of minutes to return to terra firma, the whole process takes about 3 hours.  So we were hungry when we got done.  Where did we go to eat?  CAFE RIO!

So, the title of this blog is Kevin LIVES with ALS.  Well - this is living!!


Flight 1:  Joey and Jordan
 
 
Flight 2:  Lindsay, me, Kristin


Sunday, September 2, 2012

Making ALS Fun - Please give to MDA?

It is Labor Day weekend, which means the MDA is having its annual TV Telethon on the ABC TV Network.  It is a very surreal experience to watch this program and realize that they are there to help me and my family.  So, I think this is a good time to introduce you to the MDA through my own personal experience.

Now that I have been diagnosed with ALS, my visits to the University of Utah Clinical Neurosciences Center are different.  I'm now a member of a very special new family - the Muscular Dystrophy Association Motor Neuron Disease Clinic at the U of U.  I have been amazed by the work that they do at the U, and now I have a new level of understanding, respect, and admiration for what MDA does up there.  The MDA clinic is devoted to caring for patients with ALS and 40 other motor neuron diseases.

My first experience with them was on August 15th.  They conduct the ALS clinic on Wednesdays. Other days are reserved for other neuromuscular diseases like muscular dystrophy.  On Wednesdays they schedule 6 people like me - only 6!  And they spend the entire afternoon with those 6.

I was surprised when we checked in at the clinic and they would not take my $25 insurance copayment. We checked in at 11:00 a.m. and they escorted us to our exam room.  Mine was right next to Kenya's work station which made me very happy.  For the next several hours I visited with a whole team of wonderful people led by Dr. Mark Bromberg.  One by one, these professionals spent as much of their time as we needed to answer our questions and give valuable advice and support to help Gerrí, me, and our family.  Not one of them rushed their visit.  Over the next several hours I spent time with these people.

Mary Jensen is the Clinic Nurse Coordinator.  She juggles all of the resources that are offered by the clinic.  She is the go-to person if we have any questions between visits, or if we need to get in touch with any of the team members.

Lesha Krantz and Heather Hayes form a team for Occupational and Physical Therapy.  As ALS progresses, they are there to stay one step ahead of problems that I may have in dealing with my environment and in performing every day tasks.  They give advice on making our home more ALS friendly, and they assess our needs for medical equipment, including wheel chairs. I left that visit with a prescription for a support device to help me with my footdrop problem to prevent falling.

Michelle Taggart is a Speech Therapist.  She helps me in dealing with speech and swallowing.  These are problems that I am already experiencing.  They give hints on how to eat without choking and strategies on how to preserve my voice and speech like the use of voice amplification devices and, as things progress, devices that can do the talking for me.

As swallowing gets more difficult, people with ALS tend to lose weight.  They are very concerned about that, because with ALS, I will lose muscle mass through atrophy.  That happens no matter what, but, on top of that, they don't want me to lose muscle because I'm not eating enough.  So, Kari Lane is the Nutritionist that helps with this issue.  She helps by recommending ways to make food and liquids easier to swallow without some going down the wrong pipe (already a problem for me).  She is also there to let me know if a gastric feeding tube should be considered at some point.  I've always been a picky eater, so it's good to know that I will be able to eat without tasting foods I don't like.

Natalie Bee is the Respiratory Therapist.  She tests my lung capacity and the strength of muscles that are used in breathing.  She's there to recommend different ways to deal with coughing and breathing issues as they develop.  She's pretty important because breathing problems are usually what ends the lives of people like me.  I already cough quite a bit, and now I have the strength to do it well.  It is hard to imagine not having the strength to cough when I need to.  They have cough assist devices to help.  At some point I will be presented with the possibility of needing a tracheotomy and a ventilator machine.  Natalie and Estelle Harris, the Pulmonologist are there to help me make decisions about that.

Kathy Day is the clinic's social worker.  As you can imagine, ALS is hard to wrap your mind around, not just for me, but even more so for Gerrí and my kids.  Kathy is there to help me and my family deal with emotional and psychological issues.  We are looking forward to spending time as a family with her.

Anne Nicholson is the MDA Representative.  She's there to support all of us.  I was surprised to learn that MDA has a "loan closet" full of medical equipment, including wheel chairs.  I like to joke in my morbid way, that the loan closet works because ALS has a high turnover rate.  MDA also sponsors a support group that meets on the first Tuesday of each month.  My first meeting with them will be this week.

And, of course, there is Dr. Bromberg.  His specialty is ALS.  He sees patients from all over Utah, southern Idaho, and northeastern Nevada who are served by the MDA Clinic.  Again, I am amazed at how much time Dr. Bromberg is able to spend with me.  We probably visited with him for an hour or more, and we asked question after question.  He just stayed there until we were done. 

One of the last things we did was work with Kenya to schedule another appointment for November.  Kenya's husband dropped by the clinic during the day and she brought him to our room to introduce us.  He must be a great guy to have married a girl like Kenya.

These are all REALLY nice people.  I like to call them the people that are there to make ALS fun!

These services and the care they offer are available because people give to MDA.  All of the services I've described are just for ALS patients like me.  They also conduct research and clinical trials.  I am already a part of a research project that is looking for genetic causes for ALS, and I hope to participate in any trials that they do.  Trial results may not help me, but they have to keep looking for causes and cures for others that are coming down the road.

If you would like to contribute to the great work that they do, now is a good time with the MDA Telethon going on.  You can make a contribution over the phone by dialing 1-800-FIGHTMD.  That is 1-800-344-4863. You can also contribute on-line at https://secure.mdausa.org/donate/ .  You can find that link at MDA.org.  You can also text "MDA" to 20222 to donate $10 on your cell phone bill.

There are a lot of people less fortunate than I am that could really use our help.  I really appreciate it, too.  Thanks everybody!

Saturday, September 1, 2012

Make a wish.

On July 13th, I received an invitation from a dear friend of mine.  Her name is Eve Mary Verde.  We worked together at the phone company for many years.  She is part of a group of former phone company people that I like to call the boat people.  Eve Mary also worked at the U until not too long ago.  Also at the U are boat people, Judy Yeates, Linda Lane, Terry Cirillo, Anita Sjoblom, and Denise (Elwood back at the phone company).

Eve Mary is now the Development Director for Hogle Zoo.  She has had a long association with the Zoo since long before she took this position.  She is understandably very proud of the Zoo, with it's beautiful new displays for which she played an important fund raising role.

Eve Mary invited us all to a special and personal VIP tour of the Zoo.  Those who were able to accept the invitation for July 26th included Judy, Linda and her sister Pam, and me and my wife Gerri'.

Linda's sister, Pam was recently diagnosed with a nasty case of colon cancer.  On the 26th, it had only been a few days since she had been through a difficult surgery.  She is now going through chemotherapy.  She just happens to work at the Huntsman Cancer Center, where she is receiving the best treatment that is available anywhere and helping other cancer patients.

We met at the Zoo's gate where Eve Mary had a 6 passenger electric vehicle (like a big golf cart) waiting for us.  She treated us to dinner at the "Beastro," the Zoo's new dining area.  And then she guided us through the whole Zoo with a special introduction to the new Rocky Shores exhibit, where visitors enjoy beautiful views and close up encounters with penguins, seals, sea lions, and . . . BEARS!   Visitors literally come face to face with a polar bear and can watch grizzly bear siblings making mischief.

We saw the whole Zoo, effortlessly, and enjoyed Eve Mary's commentary based on her close association with everything that happens at the Zoo.  We even took a ride on the carousel!  This was a great experience for all of us, but probably most special for Pam and me.  Neither one of us could have trekked easily over the entire landscape of the Zoo.

As we were leaving and saying our "see you laters," Pam and I took a few steps away from the others. I asked Pam, "Do you feel like a make-a-wish kid?"  She smiled with me, knowing exactly what I meant.

Thank you Eve Mary Verde for your kind and generous heart.  Eve Mary has been through her own bout with cancer and has recently lost a very close family member to cancer.  Anita Sjoblom, another of our boat people, had the fight of her life with breast cancer, just a few years ago.  When she didn't know whether or not she could or should pursue a really long and difficult course of chemo, Eve Mary put her arm around Anita and took her to a support group that helped her have the strength to go through chemo.

Nobody cares and shares the worry, pain, and misfortune of others like Eve Mary.  There is only one Eve Mary.  It's very hard to imagine our world without her in it.

We all love you, Eve Mary.

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