Old 08-30-2017, 04:27 PM #16 (permalink)
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Default Re: What Happened Here?

I forgot to add to that...I also furniture/wall walk around the house, use a walker around the house during the night, have a stairlift and use a power chair if we go anywhere. I don't drive anymore so my wife does the driving. We bought a handicapped van with the side loading ramp. And if I am going with somebody else and not using the van, I have one of those portable Go-Go scooters (but it's a three wheel one and tips very easy on uneven surfaces).
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Old 08-30-2017, 06:46 PM #17 (permalink)
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Default Re: What Happened Here?

Thanks so much Kevinw, I deeply appreciate the support and some hope facing this. There are people on the Yahoo site with true PLS also who have being getting by 15+ years. I will just pray that it will stays PLS and doesn't morph to ALS. I love to hear other people's stories and symptoms. My wife does most of the driving also, me being on some medications I don't want to have any accidents or hurt anyone. At the ALS clinic they thought I should start using a walker. I haven't yet but I know it will be soon. I do use my cane when we go to busy places but it doesn't help much with balance issues. But it does create a safe space so people won't knock into me. I notice when we go somewhere and I walk behind the shopping cart I walk much better.
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Old 08-30-2017, 06:57 PM #18 (permalink)
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Yeah, I truly 100% hate and I mean hate having to start using something new. Maybe it's just me being stubborn but I resist every new thing I am forced to use. That is true around the house and out in public, I just hate showing any weakness in front of my family. Even today if we are somewhere and I am using the power chair I will still have my cane along for the ride. Because there are times when photos are being taken and I will not be photographed in my chair, and even once I get out I make somebody hold my cane so it's not in the picture. I don't know maybe I would have progressed even more rapidly then I did if I weren't so stubborn (or maybe it stupidity on my part). But I also feel that fighting everything every step of the way is also helping keep my muscles as strong as possible, rather than just giving up.
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Old 08-30-2017, 07:14 PM #19 (permalink)
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Default Re: What Happened Here?

Kevinw you sound just like me. I'm very stubborn also. I will fight as long as I can not to use the walker even if I know I should. I force myself to walk on the treadmill every day to try to keep my legs going. I have to hold on to the side rails and walk on the slower speeds but hey I'm still walking. For me the worst is the mental game this plays on my head. I go through periods of depression and then periods that everything is ok. The anxiety meds are helping with that though. I'm still new to this. 2 years now of symptoms and 1 1/2 years seeing a neurologist. Last month was my 1st trip to the ALS clinic. I did heavy lifting at my work at a major trucking company and had to retire from my job. The neurologist helped me get ssdi. So at least we can pay the bills and keep the house. I'm trying to find things to keep me busy and keep my mind off this but all the things I love to do are getting hard for me like camping, hiking and fishing. I'm already sick of tv and find myself on the computer a lot. Thanks for your reply.

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Old 08-31-2017, 10:02 AM #20 (permalink)
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Thestratman56...We are probably a lot alike, and I assume there are others on here that feel the same way when it comes to "giving in" to the next step even if it helps us. Regarding the mental game and the depression (disclaimer: if it gets too bad see a therapist), but you are going to be up and down for years and it's okay. Be depressed and stubborn one day when you feel like you have been cheated, and then wake up to a new day and basically say "it is what it is and there is no way I can change it at this point". The reality is that none of us wanted or asked for this, and we all pictured our lives being in a different position and would rather not even know the things we know about this. I know that I would love to go back to before this all started and I was working as an appraiser in an auto body shop and working around the house and drinking beer in the garage on weekends (I loved it). Now all that is gone, I did spend a lot of time reading about the studies and research early on but that became depressing over the years of "great finds" only to never hear about them again or they were not what they thought. You will end up bouncing from watching tv, to the computer, to reading, and then maybe even trying to do something you used to be able to do...or like me, stare at the walls sometimes. There is no way around the fact that it is depressing and I would question anybody that gets up and says, "that they find it a blessing".
*** Above all of that....I would be excited if I were you at your timeframe so far. Basically you are three and half years into it from symptom onset and nobody has told you that you have a dirty EMG and I'm assuming that they didn't say you had questionable Forced Vital Capacity at your clinic visit. So I would be looking on the bright side, that you can account for 3 1/2 years and are still walking on a treadmill and limiting your use of aids safely...to me that's good news given how fast true ALS can move on a person. ***
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Old 08-31-2017, 12:56 PM #21 (permalink)
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Default Re: What Happened Here?

Wow! Kevin you are a breath of fresh air thank you for being so encouraging. I think sometimes one can feel daunted by some posters! But you have been spot on in your assessment.
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Old 08-31-2017, 02:30 PM #22 (permalink)
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Wow! Kevin you are a breath of fresh air thank you for being so encouraging. I think sometimes one can feel daunted by some posters! But you have been spot on in your assessment.
As I first said in the thread, "I am also guilty of not posting here". I used to depend on this forum to get me through the day early on and there was so much action. And I agree that some people can avoid posting due to others and their comments. In turn it is kinda fun to watch how many members verses guests are online and how many times a thread is viewed compared to how many comments are made on the subject. I will also admit that some threads do not have the content or momentum to keep going and end up getting locked due to the elapsed time.
Also, and I just thought of this so it might not make sense. But back when I was on the forum all time there weren't really the smartphones we have today. It was more sitting in front of a desktop computer and poking around websites. I guess the Facebook app on smartphones is easier to navigate, rather then navigating a web based forum on a phone. If that makes any sense.
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Old 08-31-2017, 02:41 PM #23 (permalink)
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A good example is the topic I started yesterday and was only commented on twice by Shiftkicker. Now weight came become a very important issue for someone that has MND. I mean are people being advised to pack on the pounds while they can in case it becomes ALS or a feeding tube is needed? Is overall weight more important than the complications that might come with them since they are expecting future feeding problems? These are the kinda topics that I would think would have more than two people talking when it's been viewed more than 140 times. I expect that thread to sit now for the allotted time and be locked with no future discussion.
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Old 08-31-2017, 03:02 PM #24 (permalink)
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Default Re: What Happened Here?

Many views are by guests. I expect other PALS and CALS viewed it and , as I did, refrained from comment because the issue of weight with PLS is out of our experience/ knowledge. I am always interested in learning so I do read this subforum but try not to comment because it is your place- not mine
Have you considered instituting a PLS rollcall? Maybe that will bring some people out. They can at least say I am here! even if there is nothing they want to ask. I will happily make it a sticky

I think everything you say is true. I wonder too if the slow progression factors into this. Slow progressing PALS/ CALS post less often too- a combo of less frequent crises and probably, after a time, forum fatigue
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Old 08-31-2017, 03:19 PM #25 (permalink)
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Many views are by guests. I expect other PALS and CALS viewed it and , as I did, refrained from comment because the issue of weight with PLS is out of our experience/ knowledge.

I wonder too if the slow progression factors into this. Slow progressing PALS/ CALS post less often too- a combo of less frequent crises and probably, after a time, forum fatigue
Hi Nikki J ... I have read many of your posts and would never say that something is out of your knowledge...lol, you're great.
Also, I kinda wish we were like Europe and just called it Motor Neuron Disease and not break it down sooo far that we micromanage our symptoms.
Also, also...you are spot on with the phrase "forum fatigue". You have really been a constant here and for that the forum and everyone is better off. With that said, I would like to thank you for your dedication and determination to keep information flowing.
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Old 08-31-2017, 03:34 PM #26 (permalink)
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Default Re: What Happened Here?

I really think the answers for PLS can be different though. Exercise and weight are 2 prime examples I would guess. I am LMN dominant so at the opposite end of the spectrum from you

Thank you for your very kind words
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Old 08-31-2017, 04:19 PM #27 (permalink)
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Nikki J....the problem with the exercise is not only the balance, but the stamina also. Because I would say about two years into it I had my neurologist at the clinic write for physical therapy. Now the clinic/hospital that I go to has a satellite physical therapy building five minutes from my house verses an hour to the hospital. Anyway, I was going for a while and they kept increasing my workout sessions. It got to the point where I went in the morning and was laying down the rest of the day (and this was only two years after Dx'd). So I told my PT/OT people at the clinic and explained what exercises they had me doing, stuff like leg lifts and kept increasing the amount of weights around my ankles. When they heard this they knew exactly what type of workout routine the other place had me on and said "oh no that is for someone rehabilitating from an injury or something". They along with the doctor went on to say that the stuff they had me during would be to build muscle, which wasn't going to happen. So I'll wrap up my long story by saying they called the satellite rehab place and explained PLS to them (which they had no idea what it was prior to that) and they taught me some "range of motion" stretches and said that was all they could do for me. There...aren't you glad you read that whole thing just to find out that I'm stretching?
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Old 08-31-2017, 04:24 PM #28 (permalink)
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Default Re: What Happened Here?

Nice to see all the replays. Although I am new and still waiting on a final diagnosis. Right now they are telling me it's PLS. But in the next sentence they say PLS more often than not turns to ALS. So I love to able to see what everyone else is going through and what I can expect. I do have a lot of atrophy in my legs and I was under the impression that that is LMN symptom. Also I have lots of twitching. Mostly below the knees but its all day every day. All my other symptoms are UMN. My next ALS clinic is in January and hoping not to have to much progression by then. I will get another emg in March. I've have 2 and they were clean. They want to give me 1 each year. Keep the thread going. Lots of people searching for answers and maybe some will begin posting again.
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Old 08-31-2017, 04:57 PM #29 (permalink)
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But in the next sentence they say PLS more often than not turns to ALS. So I love to able to see what everyone else is going through and what I can expect. I do have a lot of atrophy in my legs and I was under the impression that that is LMN symptom. Also I have lots of twitching. Mostly below the knees but its all day every day. All my other symptoms are UMN. I will get another emg in March. I've have 2 and they were clean..
I did question my neurologist that runs the ALS Hope Foundation in Philly what the percentage was, because of course I worried about it early on. And she stated "they have no idea". There are too many variables in play like was PLS the official diagnosis too early, I wish it was something they could chart with lab work. The problem is there is even a lack of understanding or agreement between them also. What one is ready to call ALS the other is still calling PLS and the other way around.
True atrophy is a concern, I myself sit here in shorts staring at my muscles wondering if they looked like that a year ago. Regarding the twitching, I also have that all over, legs, hand, and arms. But twitching is different then what true lower motor neurons do...there was a video on here years ago and it was like the skin was "rolling". It was strange, but different than the "jumping" of twitches. Finally... I will keep praying for those clean EMG's for you. To me they are the baseline of everything here. Once they say they see lower motor neuron involvement, then it's really time for concern.
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Old 09-20-2017, 07:40 AM #30 (permalink)
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Default Re: What Happened Here?

I don't post because I am in limbo. With an "official" dx of PLS from the U Iowa and from Mayo, Mayo is having second thoughts. They swooped in two weeks ago to give me a dual diagnosis - glycine receptor positivity as #1 and PLS moving to slot #2. I don't post because I think I'd feel silly while waiting to see if the IVIG works. (I'm hopeful but honestly my symptoms perfectly mirror PLS and not so much Stiff Person. I just don't have the pain they all talk constantly about.)

But you are right - there is a lot of movement on the FB groups. It's a simple format because everyone is over there anyway. I'm with you - I prefer the community feel of the forums.

Stratman, I could have posted your post -

Although I do have signs of muscle atrophy. I Have brisk reflexes, twitching, positive babinski and balance problems. Hold on to things when I walk. PT called me a furniture walker. A few problems swallowing but only 3 times in the last year. Weakness lifting over my head. Takes 2 hands to lift the milk jug out of the fridge. Also having some muscle cramping.

I have atrophy on my right leg in the upper outside calf. They've been sure I am going to have an issue appear on my EMGs - so much so that they have given me three within ONE year. I have all of the symptoms you have - twitching, asymmetrical brisk reflexes - right side is more so but the left is beginning to change, positive babinski, clonus began just slightly in the foot but now is so much stronger, more beats, and daily things like going up steps will set it off. I have weakness over my head but I can lift fine otherwise. I get cramps in my feet and sometimes lower calf.

I'm glad the anxiety meds are helping you. A gal from the ALS Clinic sent me an email the other day about looking into the benefits of medical marijuana. I don't know... I'm not there yet with anxiety. I was several months ago but I am progressing pretty slow for the most part. Things are definitely changing but it feels so slow compared to ALS timelines that I feel a lot of gratefulness there.
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