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Seeing More Progress


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Tyler's scalp pain is gone. He can wash his hair in the shower and his vocal tics do not start. He can do high leg marches and finally do leg lifts when laying on his back. I thought I would never see him do this exercise without tremors. I am hunting down new exercises every few weeks because he is able to do ankle weights with the orginal exercises he started doing back in May. He is able to do a set of 20 with many of them. He can do bridges and some exercise can be done sitting upright instead of doing them laying down on the floor. He has graduated to the upright position with some exercises and beginning to add weights to those exercises.Having to monitor exercises with a pulse ox meter for fear of over doing it and sending his into a crash. Strength is coming and exercises are not causing tremors to start.

Tyler is having some lower back pain when riding his bike and sitting up on the bench without a back. This pain eases up and is gone about 20 minutes later after exercising. I am having him do some stretching exercises and some exercises that help with lower back pain. However, this pain is the same type of pain he experienced the last time he was doing the bench exercise. My thinking is this pain is related to weak lower back muscles. I say this because Tyler is just now able to do exercises that would strengthen low back muscles. So I kinda think that doing the bench was like putting the Cart before the HORSE maybe? Tyler was limited in what exercises he could do in the beginning because so many exercises would just cause tremors to start. He is not going to stop riding the bike or doing the bench. However, he is not going to go up on time for a few weeks, so he can concentrate on building up some lower back strength with some other exercises. These exercises should also help with pain issues. Tyler is not discouraged by the pain and is excited about his progress. He realizes he is getting stronger but I am really having to watch for signs of over doing the exercise with him. So scared I will go overboard with exerises and send him into a POTS crash.

As far as medications, he is still on the Midodrine and thermotabs to help keep blood pressures up. None of those medciations have been lowered. It will be interesting to see if the LDN will help that situation. He has been able to lower his dosage of Zoloft and extended release clonidine.

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That's so awesome! How exciting that he is able to increase his exercise and activity level. So happy for you and Tyler! I will continue to pray for improvement and that he would be able to live a more normal life again.

Thanks so much for sharing, encourages me to keep going when I hear of others making improvments. God bless.

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