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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!

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