lunarruna
Distinguished member
- Joined
- May 20, 2006
- Messages
- 148
- Reason
- CALS
- Country
- US
- State
- xx
- City
- xxxx
Hello, I am the wife and caregiver of a 42 yr old man with ALS, diagnosed August 2004. I thought I would offer a tip on something that works well for us, and then ask for some help/support.
First, my husband has found tremendous relief from marijuana, which is legal for medical purposes here in Montana USA. We started it to relieve muscle spasticity, but it also is great for reducing saliva, and has analgesic properties. I have a .pdf file of a research article about using MJ for ALS if anyone wants it I can email it. Because we dont want to compromise his lungs by smoking, we use an herbal 'vaporizer' and he sips on the vapors about 4-5 x/day. (By the way, he was never a MJ smoker before ALS!) He also takes baclofen for his spasticity, but the MJ is far superior.
Now, for our latest challenge. His hands/arms went first, then legs and he got wheelchair last summer, now pretty immobile in a lift recliner chair and he doesnt ever want to go out anymore because he is so uncomfortable in the wheelchair. this winter he got a feeding tube, and now over past 4 months has totally lost speech. This part has been devestating for us. So far we had been an excellent 'team' and dealt with all these horrible trials together with as positive an attitude as we could. I was thankful for his great mindset. Well, now the anger (rightfully so) seems to be surfacing, brought about by frustration with communication difficulties. He tends to blame all the miscommunication/misunderstandings on me, and lashes out a lot--I am just beside myself and feel so unappreciated for my efforts. He has never been an angry man. He has a speech device that he types into (with infrared mouse pointer on glasses), but it is slow to get a message across and of course cant use when he is laying down to bed or other stressful times (toilet). We use a bunch of eye blinks for a few codes, but mostly he says he just wants me to ask him questions and he will nod yes or no (for now while he can!). So I ask a million questions and sometimes okay but sometimes cant hit the nail on the head and the frustration builds for us both. This seems like so much pressure on me, I have to think of all the possible questions and feel like I fail so often. Sometimes he just shakes his head and gives up, so an itch gets left unscratched or whatever.
I guess I would like to know any advice for this situation. Maybe it is as simple as my solution yesterday which was to go outside and smash a glass on our deck to unload stress.
Thanks and good to have found your site--sounds like some great people here. We are right on the Canada border south of Regina, SK (middle of nowhere).
Beth
First, my husband has found tremendous relief from marijuana, which is legal for medical purposes here in Montana USA. We started it to relieve muscle spasticity, but it also is great for reducing saliva, and has analgesic properties. I have a .pdf file of a research article about using MJ for ALS if anyone wants it I can email it. Because we dont want to compromise his lungs by smoking, we use an herbal 'vaporizer' and he sips on the vapors about 4-5 x/day. (By the way, he was never a MJ smoker before ALS!) He also takes baclofen for his spasticity, but the MJ is far superior.
Now, for our latest challenge. His hands/arms went first, then legs and he got wheelchair last summer, now pretty immobile in a lift recliner chair and he doesnt ever want to go out anymore because he is so uncomfortable in the wheelchair. this winter he got a feeding tube, and now over past 4 months has totally lost speech. This part has been devestating for us. So far we had been an excellent 'team' and dealt with all these horrible trials together with as positive an attitude as we could. I was thankful for his great mindset. Well, now the anger (rightfully so) seems to be surfacing, brought about by frustration with communication difficulties. He tends to blame all the miscommunication/misunderstandings on me, and lashes out a lot--I am just beside myself and feel so unappreciated for my efforts. He has never been an angry man. He has a speech device that he types into (with infrared mouse pointer on glasses), but it is slow to get a message across and of course cant use when he is laying down to bed or other stressful times (toilet). We use a bunch of eye blinks for a few codes, but mostly he says he just wants me to ask him questions and he will nod yes or no (for now while he can!). So I ask a million questions and sometimes okay but sometimes cant hit the nail on the head and the frustration builds for us both. This seems like so much pressure on me, I have to think of all the possible questions and feel like I fail so often. Sometimes he just shakes his head and gives up, so an itch gets left unscratched or whatever.
I guess I would like to know any advice for this situation. Maybe it is as simple as my solution yesterday which was to go outside and smash a glass on our deck to unload stress.
Thanks and good to have found your site--sounds like some great people here. We are right on the Canada border south of Regina, SK (middle of nowhere).
Beth
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