ALS with Anna Vol. 7

So I have like 5 different blogs going on and I can’t finish one because I start another one to explain something in order to understand the first one . So I feel the need to explain what an ALS clinic is and why they are so important. 

I go to my clinics in Jacksonville at Mayo. They are the best place on earth. I am so thankful for the doctors and staff at Mayo. You know how some doctor offices act like they don’t care, or you are just another patient? Well Mayo is an experience like no other. They strive to make you happy. Everyone is happy to see you. You leave feeling welcomed and cared for. I truly cannot recommend them enough. I have never experienced anything like it.

So a clinic day starts off with complimentary valet parking. We check in at 8:30 and they take my vitals and weigh me. Then I go to my room for the day. Clinic lasts from 8:30 to 1:00. I see 5 different doctors. They all come to my room on a rotation. They spend 30 to 45 minutes with me. I see occupational therapy, physical therapy, respiratory therapy, speech therapy, social services, and my neurologist. I also do cognitive tests each time. Each doctor does an evaluation to determine what has changed and then they give suggestions on devices or routines that would help me. They each provide resources that have been so helpful. That is where I learned about my eye gaze device  that I use to communicate now. I would be lost without it. Social services provide a therapy session just to listen and provide any help or resources that might make our life easier. They help with insurance problems, they are my go to if I can not get something done. We were having problems getting my power chair fixed. I let them know and they had the problem fixed in no time. 

Tips and Tricks at clinic:

• Wear comfortable clothes
• Take snacks – We even take a cooler.
• Take a book bag or bag for hand outs or materials given
• Drink plenty of water
• I highly suggest taking two people with you. Your caregiver and a support person
•  Have someone take notes
• Write down all questions you have for your doctors before you get there
• When you leave and have questions write them down. So you can send in a follow up email.

After the clinic is over all the doctors meet and compare notes on the patients. Each clinic they only see 4 patients. So they can focus on each individual. This so important because all of your doctors are on the same page. When you go see individual doctors they don’t communicate and symptoms or other important information can be over looked.

I have been meeting with this group of doctors for over a year. They have been there for me since almost the beginning. I know God led me to Mayo. I pray none of my followers every have anything serious go on, but if you do Mayo is the best place to go. I can also send them a message through my portal and I get a response the same day. I just love the service and rapport I get. Mayo has made ALS a lot more manageable for me and my family.

If you or someone you love has or think you might have ALS I highly suggest you use the link below. My neurologist is the best in the business and so is his team.

https://www.mayoclinic.org/biographies/oskarsson-bjorn-e-m-d/bio-20257831

~ He has a plan and I have a purpose ~

• ALS with Anna