T
Reaction score
17

Profile posts Latest activity Postings About

  • Michael has good use of his hands, though strength and dexterity are not normal. His upper body strength is good and so he is able to help with transfers. He badly broke his collar bone which refused to heal and required surgery. I have a hoyer lift which was helpful. Given M’s pronounced spasticity, his walking days are over. Now with his collarbone healed he helps with his transfers. He uses a Permobil f3 corpus chair. For showering, we have a walk-in shower with grab bars everywhere. He has help in the shower for his back and lower legs. M has a baclofen pump. He had it placed 10 years ago. He is on 1100 micrograms a day and also uses oral baclofen and gabapentin. He has regular botox injections to his hamstrings. Hard to say what his baseline would be without the pump. We have had a pump malfunctions requiring replacement. It was very scary.
    Speech has deteriorated. I have to be looking at him to understand him. I have aids at for stretching.
    Anna
    Hi Trippy-
    I do still ingest raw. It has something called THCA, that has shown to help with some symptoms, without the mood effects. I do that at the beginning of my day, and it helps reduce spasticity till my evening handful of pills. I am unable to take things in via lungs (vapour or smoke)- I grew up in a heavy smoking home and had chronic bronchitis and ear infections, so even the idea makes my skin crawl. Not a reasonable response, but I just can't beat it. I'm pretty sure the dizziness is actually gerd because of all the drugs, but can't get in to see a specialist for another 6 weeks. My local ALS clinic is useless with providing assistance for some reason.
    I had to remove my email because someone (a DIHALer) scooped my email and started emailing me privately about their symptoms.

    I hope you are doing well. I was concerned because you hadn't signed on for a while.

    Fiona
    Hello Trippy!

    My email is (removed)
    Send me an email and we can post of forum privately.

    Fiona
  • Loading…
  • Loading…
  • Loading…
Top