Update on Rick
Posted 05-08-2008 at 08:10 AM by Marjorie R. Wilcox
Rick has recently had good news about his injured leg. The bone surgery was a success, and after nine months of hopping on one foot, he is now walking without pain or assistance. The bad news is the ALS is still progressing as he is losing strength and feeling in his feet and other leg. He was sceduled to have a spinal tap and muscle biopsy this week, but that was ordered by a new neurologist we met, and our present N canceled it. He agrees that Rick shouldn't lose any portion of a good muscle and to take the risks of a spinal since we know he has "something neuron diseasewise" and don't need to name it. We willnot be going back for six months unless we need help. Rick doesn't want to be part of a study anyway, so isn'tlooking for medications on trial. So, because we don't know what next year will bring, we plan to take a train trip out to the western states to visit our two brothers out there. We are looking forward to the trip, and expect to make the most of whatever time we have for him to be able to walk. He still hasn't gotten his BIpap machine, but has the CPap not working very well. We were told he needed to progress to the B but the doctors don't agree. We are working on that issue. Rick is beginning to get twitches in his toes and has one finger that he cannot use. Please put in your "two cents" if you think this is ALS rather than Huntingtons disease or some other. Thanks for reading, and we look forward to reading your posts. We think of you all and pray for you regularly. Bless you. Marjorie
Total Comments 7
Comments
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B-pap
Rick is getting his B-pap ASAP. We got a call yesterday that they put their heads together with the neurologist and, come to find out, Rick needs it very much. I am told it will be set quite high. We know now that his sleep apnea has grown worse over the last year and a half. We wonder if that means he could easily expire in his sleep one day to come....... and I guess that would be the best way to go. I wish we didn't have to consider "the end" but with ALS we know what we know... and it isn't good. At least he will feel stronger once he gets some recuperative sleep again. He is yawning all day and taking naps. Please comment on all this, and tell me what you think we can expect..... good or bad. For instance, how do you like your B-pap, and did it take long or any time at all to get used to it? Thanks. MPosted 05-09-2008 at 11:59 AM by Marjorie R. Wilcox
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B-pap
Rick is getting his B-pap ASAP. We got a call yesterday that they put their heads together with the neurologist and, come to find out, Rick needs it very much. I am told it will be set quite high. We know now that his sleep apnea has grown worse over the last year and a half. We wonder if that means he could easily expire in his sleep one day to come....... and I guess that would be the best way to go. I wish we didn't have to consider "the end" but with ALS we know what we know... and it isn't good. At least he will feel stronger once he gets some recuperative sleep again. He is yawning all day and taking naps. Please comment on all this, and tell me what you think we can expect..... good or bad. For instance, how do you like your B-pap, and did it take long or any time at all to get used to it? Thanks. MPosted 05-09-2008 at 12:08 PM by Marjorie R. Wilcox -
Hi Marjorie. The Bipap should keep Rick breathing and alive longer. When he first gets it tell him to try using it before bed. Maybe sitting up in a chair watching TV or something relaxing. He could try just lying down in the daytime with it on to get used to it. Relax and don't fight the machine. It is different than a CPAP. I had one and couldn't get used to it but have had a BIPAP for 3 1/2 years.
AL.Posted 05-11-2008 at 11:10 PM by Al -
bipap
Hi AL.. Thanks for your advice. Rick will do exactly what you suggested. I was told that the machine is set very high. I think it will be 17 intake and14 outtake... don't quite understand that. But we don't have the machine yet. We have been waiting since April 22 nd when the sleep study was done. I have been anxious that the cpap wasn't good enough anymore since February. We are dealing with the VA. We wonder if the government just doesn't have the funds to get his machine ASAP and he is on a waiting list or something. Meanwhile, you know, it isn't good for Rick to sleep without this assistance. He is weak and nodding off all day. He is DRIVING now because his leg injury is doing fine. He yawns a lot all day too. I am concerned about his CO2 levels and his lack of recuperative sleep! Originally we were told that he stops breathing 500 times per night! I could go crazy fighting for his rights! Please comment, and don't be afraid to say it like it is.... I read to him only what he needs to hear. He isn't computer savvy so doesn't go here by himself. P.S. Apparantly he had respiratory onset, not limb as we had thought. He has had sleep apnea for over 10 years... untreated.Posted 05-13-2008 at 07:19 AM by Marjorie R. Wilcox -
bipap
My numbers are 18 8 and 18. That means IPAP or inspiration is set at 18. EPAP or exhalation pressure is 8 and then 18 breaths per minute. He should feel a lot better when he gets on it.
AL.Posted 05-14-2008 at 12:39 AM by Al -
Especially to AL
Rick took to the Bipap at the very first try. He slept like a baby for 10 hours the first night. But I have noticed that he breathes a while, even up 70 breaths and then skips up to 10. Then he might breathe 10 and miss one... and so on. I am still asking for the ST machine to better take care of the problem. In the meantime, at least he has more energy now during the day and I can see improvment in his activities. Thanks for your interest. We will have a N appointment in a month. He says that Rick's blood oxygen is fine. I tried to use his machine for just a minute, and thought, wow, how can he deal with this force? I guess I don't need it! To you and to all, God bless you to overflowing! MPosted 05-26-2008 at 08:43 PM by Marjorie R. Wilcox - Hi if you come out west.. sf forbes clinic has a trial that has helped me alot..muscle shots vegef ..I recamend it . Also was told there will be a cure soon ...we have hopePosted 07-22-2009 at 07:46 PM by Susiediver
