- Jun 12, 2007
Hi Frizzel and everyone else too. Thanks for checking on me and T. We are doing OK today. Since the last post, we have come to accept that it is looking like T will have to use a wheelchair soon. At least for things that require a lot of walking. She is really hesitant to use one because she just wants to keep walking as long as she can, even if it is slowly, because she wants to work her muscles. She is kind of excited about getting one of those walkers that have the little basket to hold things/chair when you're tired to sit on. I think she is going to try to use one of those before she gives in to a wheelchair. As usual we try to keep it light and joke as much as we can, but we have been crying frequently lately. Funny thing is that after a good cry, we feel some relief. She was worried that if she used a wheelchair that I might be ashamed of her... what a crazy idea! There's no way I'll let that change anything about the way I feel (totally, passionately, crazy in love ).
Another note for anyone interested in trying something they haven't tried before... T has been taking a medication that has supposedly helped MS patients and was showing some "promise" of improving the condition of ALS patients. She was told about this by a good friend at work whose wife was really suffering with MS. It is called Naltrexone, and it was already FDA approved in a 50 mg dose a while ago. We did ask her doctor about it and he seemed a little resistant, as if it probably won't do much... something about improving nerve conduction slightly. Well, we really wanted to give it a shot anyways and we did. The "therapy" is to take low-dose naltrexone (only 5mg) every night at bedtime. It is also important that it is a "quick-release" form. The doctor would have to monitor your liver, but the chance that it would be affected is pretty small since it is only 5mg. T had been using it for a month and one of the side effects was not sleeping very much at all for the first week. However, she did notice an increase in her energy level and seemed to feel a bit stronger. Recently, she forgot to call in a refill, and had to go without it for 4 days (we get it from a pharmacy in Boca Raton by mail). Well, she definitely felt the difference in her energy level when she didn't have it (big time). Now she has taken it for a couple days again and is feeling like she has more energy. The other cool thing is that is costs her less than $25.00 for one month supply. The LDN has to be made at a compounding pharmacy and we are using one of the reccomended ones (Skip's Pharmacy in Boca Raton, FL). And yes, a perscription is required. Just make sure the doctor gives you the right dose (5mg) and specifies "quick-release" form. I didn't want to say anything about this before until T had time to see if it would really do anything, which it does seem to be helping her. Let me know if any of you try it, I'd be interested in seeing if someone else has similar results.