Old 03-13-2017, 09:21 AM #1 (permalink)
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Default It's been awhile

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!

Last edited by AKmom : 03-13-2017 at 09:28 AM
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Old 03-14-2017, 10:25 PM #2 (permalink)
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Default Re: It's been awhile

Hi Joyce!

Thanks so much for checking in and catching up. It seems to be a common occurrence for those with UMN issues to have a rocky start with regards to getting a diagnosis. Yours seems to have been longer and rockier than most.
This subforum seems to be a quiet one. At least while I've been here.

Anyhow, welcome back!

Best

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Old 03-22-2017, 02:45 PM #3 (permalink)
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Default Re: It's been awhile

Well Laurie, as you may have noticed the Forum now is different. I’ve waited to see if others would follow up (reply) to your Thread. Thanks for the update on your progression and how life is going for you.

The Forum has changed… some of the old members have moved on and sadly passed on, and even a few who even had “Stickies” contributed to them have moved on, many who truly have ALS/PLS or other debilitating MNDs have read some of the sub-Forums and seen the just utter nonsense going on and on… have left or lost interest.

The “Off Topic” sub-Forum used to be active nearly daily in each sub-Title… now it often goes for days and sometimes week or even a month before one of the titles has a new Thread or reply.

Forums evolve, interests change, new members and some of the senior members now seem to focus on just a few sub-Forums. (The Forum seems to have taken on a different air from just a year or so ago.) Whatever… I kinda first coined the phrase here “It is what it is” but now with my progression and what I observe here my new phrase is… “Nothing stays the same”. 
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Old 03-22-2017, 08:11 PM #4 (permalink)
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Default Re: It's been awhile

AKmom, welcome back. Loving to hear from you.
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Old 03-28-2017, 02:33 AM #5 (permalink)
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Default Re: It's been awhile

Thanks for taking the time to respond. Yes I do realize things change. It's good to see a few names I recognize. Hope you all are doing as well as you can.
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Old 04-02-2017, 04:26 PM #6 (permalink)
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Default Re: It's been awhile

Hi Joyce, good to see you here ! I sure miss seeing the old names. Whatever happened to the FB Cup of Tea group?

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Old 04-04-2017, 01:02 AM #7 (permalink)
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Default Re: It's been awhile

Phil, it's still around, but no one has participated on it since last year some time. I guess with so many of the original group has either passed or moved on, no one wants to post anymore. I haven't been on fb very much anymore myself. Just want to live real life to the fullest while I still can.
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