Before my liberation treatment I was not able to live in temperatures above 20 degrees Celsius. In fact, temps around 18 were optimum for me. In the late Spring and entire summer I would be a prisoner in my air conditioned home, held hostage by the sun's heat. I would joke to myself that I was like a vampire but the joke just wasn't funny anymore after living like this for the last 10 years. If I exposed my body to any type of heat above 20 degrees I would get extreme pain in my hands, arms, feet and legs. My feet would feel like they were burning and my body would go all tense and tight and I would not be able to walk at all. I would become dizzy and experience vertigo.
Since spring began a few weeks ago and the temperature has started to rise I have been watching myself with great interest as I'm hoping my heat intolerance is gone. I have had hints that it might be gone like when I had a hot bath and was able to clean the tub after. (Usually I felt like a limp piece of spaghetti and had to go directly to bed leaving the tub to cleaned on another day.)
Two days ago I decided to take my dogs to the off leash park with my son Darin and his puppy. It was around 22 degrees Celsius so I was a bit concerned how my body would react. When I started walking in the park my left knee felt like I had a tensor bandage wrapped around it and I thought "Oh God! here it comes!" But then I kept walking and the "hug" went away. I was waiting for the ax to fall but it never did. I was aware of the sun's heat on my skin and the breeze blowing but I had no exacerbations at all!
I was able to walk in the bright heat of the sun with my dogs and my boy like a normal mom. I did not explode into flames like an Anne Rice character. This was the most marvelous feeling and I laughed because for most people it was so mundane and ordinary for them. My right leg and foot are still the weakest links in my recovery and the leg did start to feel slightly burning but that was all. I am hoping that when the temperature really goes up I will be able to withstand the heat and enjoy my summers again.
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Hi Ginger.. I have been reading and watching your progress and comments with great interest as my family and I try to figure out the best strategy for my mom, who has ms. -- I wanted to know if you (and others who have had the liberation treatment) are continuing to take the MS drugs, and if so, why?
ReplyDeleteHey Cynthia-I stopped taking Copaxone last June when I realized it was just not working as I was spiraling down into SPMS. I started LDN. Within 2 months of taking LDN my progression and attack stopped. I am continuing taking LDN as it is not a needle, it is not toxic and I am hoping that while my body is slowly healing post op, the LDN will help to stave off attacks and progression. Even though I feel great post op, we really dont have a lot of evidence for the long term outcome. I believe the treatment is not a cure so I am going to do everything I can to take care of myself. I feel I have been given a second chance with my health.
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ReplyDeleteGinger you are not a "normal Mom"!!! You are an amazing Mom!! Courageous and brave and so helpful to so many....thx for keeping us posted on how you are doing!!.....b
ReplyDeleteHey Ginger have you seen the statement Dr. Sandy McDonald made to the Government May 11/10. It was excellent and could not have been presented any better. See the attached link.
ReplyDeletehttp://www.facebook.com/note.php?note_id=419151039918
Or google Dr. Sandy McDonald speaking to parliament.
Okay 22 is pretty good, but get this. My wife was liberated 2 days ago in Delhi India. Today we waited about 5 minutes outside the hospital for a cab to take us to the hotel. The temp was 47 degrees. My wife did fine but I'm partially melted
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