AKmom
Senior member
- Joined
- Jun 2, 2010
- Messages
- 608
- Reason
- DX UMND/PLS
- Diagnosis
- 11/2009
- Country
- US
- State
- Alaska
- City
- Wasilla
Hi all! I have been as busy as I can be in life and haven't checked in in so long, I bet most of you don't remember me!
Basically as a reminder, I've had pls for about 25+ years, but was dx'd officially in 2009. The road to dx was so rough and caused me to loose faith in the medical system. Now the only doc I see is my gp who provides me with whatever meds I need.
I am on the fullest amount of oral baclofen and 8mg of tizanidine (zanaflex) at night. I do require extra pain meds ( mainly a patch) for pain.
My progression seems to still be extremely slow. I use a pwc outside of the house and canes inside. My energy level is my current challenge. I fatigue so quickly now and my body will literally shut down now and I will suddenly get cold and very sleepy. The doc says I'm going into shock when that happens. Mainly because I over do for what my body can do, but at least I have gotten done a lot of things since the last time I was here!
Not sure if you all remember, but in 2011, my hubby lost his job and was out of work for just under 3 years. During that time, I became an at home travel consultant. We took a month off and cruised the Mediterranean (trip was paid for before job loss). Since then, I worked myself into retirement as of last year, We cruised the Baltics last June as my final cruise as it took so much energy out of me. It was a fun trip, but I missed getting off the ship for a few ports because of my body just would go.
Now I have started doing things around the home. We built a chicken coop and now have chickens! I can feed them and collect eggs as long as the grains are in the bin. Luckily I still have 2 adult children living with us who do their share. My latest projects are preparing for spring by planting seeds indoors and a new English Shepherd puppy named Teddy who is being trained as a service dog for me. He is doing quite well! Since I drop so many things, he will be a great help with retrieving them off the floor for me. As well as if I end up on the floor, he can bring my phone tome so I can get help if no one is here.
I have also found that cooking, with all it's challenges, has been something I enjoy learning on. Thanks to thumb braces, I can still use a knife, albeit very slow. I have recently purchased a food processor. Don't know why I never owned one before, it's perfect for doing a lot of functions I can not do manually myself anymore.
My progression has still not taken any more of my bulbar functions. I still have to be careful about swallowing and my speech slurs when I get overly fatigued. My shoulders are getting to the point where lifting my arms cause me to breathe hard and I can only hold them up briefly. They have lost muscle and I have torn tendons because of the stress they receive daily, so using pwc inside will be the next option, but I am fighting for as long as possible. If there is anything to be said about how I handled this blasted disease, at least it would be that I have fought it as well as I could with the grace of God as my strength!
Well, that's my update. Hope I didn't ramble too long. Remember that life is not about waiting for the storm to pass, but rather learning to dance in the rain!:grin:
Basically as a reminder, I've had pls for about 25+ years, but was dx'd officially in 2009. The road to dx was so rough and caused me to loose faith in the medical system. Now the only doc I see is my gp who provides me with whatever meds I need.
I am on the fullest amount of oral baclofen and 8mg of tizanidine (zanaflex) at night. I do require extra pain meds ( mainly a patch) for pain.
My progression seems to still be extremely slow. I use a pwc outside of the house and canes inside. My energy level is my current challenge. I fatigue so quickly now and my body will literally shut down now and I will suddenly get cold and very sleepy. The doc says I'm going into shock when that happens. Mainly because I over do for what my body can do, but at least I have gotten done a lot of things since the last time I was here!
Not sure if you all remember, but in 2011, my hubby lost his job and was out of work for just under 3 years. During that time, I became an at home travel consultant. We took a month off and cruised the Mediterranean (trip was paid for before job loss). Since then, I worked myself into retirement as of last year, We cruised the Baltics last June as my final cruise as it took so much energy out of me. It was a fun trip, but I missed getting off the ship for a few ports because of my body just would go.
Now I have started doing things around the home. We built a chicken coop and now have chickens! I can feed them and collect eggs as long as the grains are in the bin. Luckily I still have 2 adult children living with us who do their share. My latest projects are preparing for spring by planting seeds indoors and a new English Shepherd puppy named Teddy who is being trained as a service dog for me. He is doing quite well! Since I drop so many things, he will be a great help with retrieving them off the floor for me. As well as if I end up on the floor, he can bring my phone tome so I can get help if no one is here.
I have also found that cooking, with all it's challenges, has been something I enjoy learning on. Thanks to thumb braces, I can still use a knife, albeit very slow. I have recently purchased a food processor. Don't know why I never owned one before, it's perfect for doing a lot of functions I can not do manually myself anymore.
My progression has still not taken any more of my bulbar functions. I still have to be careful about swallowing and my speech slurs when I get overly fatigued. My shoulders are getting to the point where lifting my arms cause me to breathe hard and I can only hold them up briefly. They have lost muscle and I have torn tendons because of the stress they receive daily, so using pwc inside will be the next option, but I am fighting for as long as possible. If there is anything to be said about how I handled this blasted disease, at least it would be that I have fought it as well as I could with the grace of God as my strength!
Well, that's my update. Hope I didn't ramble too long. Remember that life is not about waiting for the storm to pass, but rather learning to dance in the rain!:grin:
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