Old 11-13-2014, 04:17 PM #1 (permalink)
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Default Rate of decline?

Hi all,
I'm new to the group and "most likely" (neuros best guess) have PLS. Last year at this time I was still working full time. I was going to the gym on my lunch hour. My office was on the second floor so I was going up and down a flight of stairs twice a day. I was walking around the office and the house without assistance. Now, a year later, I can't walk anywhere without my walker. I always have to hold onto to something to move, even shift my weight. My balance sucks and I've had 4 falls over the last year. My stiffness is increasing. My breathing gets "weird" a almost like my diaphragm is spazzing. I have an increased startle response. I have to choke back an emotional response for little things in life that wouldn't have caused a response in the past. Baclofen dosage has quadrupled over the last year. I can't walk very far without fatiguing and having to sit and rest. I can't cook very well anymore, my hand doesn't grasp a knife and I'm losing fine motor control of my fingers. I'm seeing a personal trainer and can still manage a few reps on the leg press machine, but overall the decline seems huge to me.

I am purchasing a Go Go scooter and will give up driving this winter and use senior citizen transportation. Reassess in the spring if I will ever drive again. Can I expect to continue to progress at this rate? I need to save money for a motorized wheelchair and home care for next year if I keep declining at this speed.

Thanks for your input.
Debbie
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Old 11-13-2014, 04:27 PM #2 (permalink)
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Default Re: Rate of decline?

Hi, Debbie --

like all the others, sorry to meet you here but welcome!

I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

also remember the rules:

#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax

ALS is about living, not dying!


>I'm new to the group and "most likely" (neuros best guess) have PLS

there is a great PLS group here.


Have you had a chance to go to the umich clinic in a2? they may be able to help narrow things.



Kind regards and warm welcome,




Max - Thursday, November 13, 2014 4:27:02 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
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Old 11-13-2014, 04:54 PM #3 (permalink)
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Default Re: Rate of decline?

Thank you Max. I am aware of that website, they provide a valuable service. Thanks for the words of wisdom! I look forward to learning a lot here and meeting more awesome people!

Debbie
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Old 11-13-2014, 05:38 PM #4 (permalink)
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Default Re: Rate of decline?

Welcome Debbie, we have a lovely group of supportive people here.
Love Gem
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Old 11-13-2014, 07:01 PM #5 (permalink)
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Default Re: Rate of decline?

Debbie, sorry things are progressing so fast. Sounds like you are thinking ahead with great wisdom. Donna
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Old 11-13-2014, 07:34 PM #6 (permalink)
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Default Re: Rate of decline?

Hi Debbie (again),

Everyone progresses so differently with these MN disorders so it's impossible to predict the future. However, it's smart to plan as if progression will be steady, even though lots of people plateau for long periods. Staying positive, living in the present, and staying thankful for the things I still have helps me. We're all in the same boat so hope you can take comfort that you're not alone in this. Kathy
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Old 11-13-2014, 09:30 PM #7 (permalink)
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Default Re: Rate of decline?

Hi Debbie, sounds like you are describing my progression as well. I sure pray that your progression slows. Every day I continue to fight for what I have left to share with my family while I can and always ask for another day to do better than the day before. Stay strong my friend.
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Old 11-14-2014, 07:08 AM #8 (permalink)
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Default Re: Rate of decline?

Thanks for sharing everyone. I thought that PLS by definition was slow to progress. Because my progression seems to be moving quickly, I'm wondering if I need to ask my doc to repeat tests to see if I do indeed have ALS. I have no further testing (EMG) scheduled at this time. Thanks for sharing the hope Kathy, that the plateaus are possible.
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Old 11-14-2014, 08:38 AM #9 (permalink)
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Default Re: Rate of decline?

Debbie, I noticed that as soon as I got my PLS diagnosis I felt like I was rapidly declining. I had had some of these symptoms(spasticity, fasticulations, cramping) for almost ten years and suddenly felt like everything was going to hell right away. I think it was just the stress of trying to wrap my mind around this serious illness while still trying to live my life. At least that's what I hope it was. Right now I think I'm plateauing, and hopefully I'll hold here for awhile. I guess that's about the best we can hope for.
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Old 11-15-2014, 01:26 PM #10 (permalink)
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Default Re: Rate of decline?

PLS is a rare disease. About 50 people in the U.S. get it a year. There are around 1000-1800 people in the U.S. with it. PLS progression varies widely. Some people can still use walkers after 10 years and some are in powerchairs after 2-3 years. I personally believe there may be more than 1 type of PLS. Mine started with speech (Bulbar PLS) and progressed to my legs after 5 years. I went from a cane to a walker to a scooter in less than 2 years. I have had it for 11 years. For the past 4 years it has been fairly stable.
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Old 11-15-2014, 08:52 PM #11 (permalink)
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Default Re: Rate of decline?

Cam, Bill, how soon after you developed symptoms did you get a diagnosis? My neuro is me it could take years of observation before she can say for sure.
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Old 11-15-2014, 09:44 PM #12 (permalink)
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Default Re: Rate of decline?

ALS can present as PLS during the first few years. Generally at 4-5 years ALS should present. I have Bulbar PLS (starts with speech). Bulbar ALS progresses quickly so they declared mine PLS after 2 years. I was told I would be near death if it was ALS.
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Old 11-16-2014, 08:46 AM #13 (permalink)
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Default Re: Rate of decline?

Hey BillBell52, as you wrote, ("About 50 people in the U.S. get it a year.")... that number is changing quickly. The Veterans Administration now has recognized PLS as service connected disability because of an unexplainable number of recent Veterans being diagnosed with PLS. And... more and more people who have been diagnosed with ALS now surviving into their 7th, 9th, 12th year and more are being re-evaluated as PLS. Also, years previous thousands of patients who were assured they did not have ALS have not followed through with a Neurologist (the 3 to 5 year observation requirement for diagnosis) and just returned to their GP for their med prescriptions and needs. In Europe (where it seems to be somewhat ahead of us in new medical discoveries) they are re-thinking the numbers of UMN MNDs. I have found many of the numbers being quoted today are re-quoted numbers from old 1998, 2002 and 2005 medical publications. Neurologist are not required to report MNDs to the CDC. Not many years ago Alzheimers was considered a rare disease... not anymore. Finally, there is a big unexplainable number of Veterans (Gulf War, Iraq and Afghan Vets) being diagnosed with ALS over the civilian population. Numbers are changing.
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Old 11-16-2014, 08:52 AM #14 (permalink)
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Default Re: Rate of decline?

Hi Debbie,

Welcome to the forum!

Theoretically (not always in reality), it does take several years of observation to properly diagnose PLS. When I first saw a neurologist, his immediate tendency (following a physical exam) was to "explore" my past in an attempt to precisely pinpoint the onset of my symptoms (he spent a long time investigating these issues -- although I think to no avail). In other words, he considered that I likely had PLS-specific symptoms during the approximate 10 years before I was formally diagnosed, and while I was being treated for the low lumbar problems. As I've posted elsewhere, my symptoms were no doubt confused by an oft-acute and chronic lumbar problem - for which I eventually had a major surgery in 2009.

Unfortunately, the progression of PLS is never predictable. I would characterize my progression as having been a relatively slow one to date, with periods of more rapid progression in between. In the PLS context, slow is always better than fast. But a "slow" state of progression, while preferable, is never to be confused with "easy"....

Mike
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Old 11-16-2014, 09:43 AM #15 (permalink)
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Default Re: Rate of decline?

Hi Debbie,
Welcome to the forum, as you will see we all have different progression rates, this is a great place to get info and get those questions answered.

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