new member to the forum

KenM

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Joined
Jun 21, 2019
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22
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PALS
Diagnosis
03/2018
Country
US
State
NC
I have been reading posts on this forum for over a year now, and am finally joining. I was diagnosed in March 2018 but have had slow progression so far and so until recently opted to keep the diagnosis to myself and my immediate family.
I want to thank all of you for the very helpful advice and support you share with one another. I have benefited a great deal from following threads and now hope to be part of the conversation myself. I am also intending to play an active role as an ALS advocate (I'm a political scientist by trade so this comes naturally!) and so hearing our collective concerns is critical.
 

KarenNWendyn

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Jul 29, 2017
Messages
2,607
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PALS
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07/2017
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OR
Hi Ken and welcome. Glad you joined us. Feel free to jump right in, especially with PALS roll call and PALS chat thread. If you know any good jokes or have pet pictures to share, we have places for that too 😄.
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
158
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Hi Ken, I am glad to hear that your progression is slow. I look forward to seeing you light it up on public policy!
 

KimT

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Nov 18, 2014
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08/2015
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Welcome, Ken. We can always use more advocates.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
931
Reason
PALS
Diagnosis
08/2014
Country
CA
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ON
Welcome to the worst club there is. But if you have to be here it is a good place. As a fellow slow progresser I look forward to your perspectives.
Vincent
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
51
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
I have been reading posts on this forum for over a year now, and am finally joining. I was diagnosed in March 2018 but have had slow progression so far and so until recently opted to keep the diagnosis to myself and my immediate family.
I want to thank all of you for the very helpful advice and support you share with one another. I have benefited a great deal from following threads and now hope to be part of the conversation myself. I am also intending to play an active role as an ALS advocate (I'm a political scientist by trade so this comes naturally!) and so hearing our collective concerns is critical.
Welcome, Ken!
I'm relatively new new to the site myself and consider myself a 'slow progressor'. I'm currently making appointments to look into this further. I almost wish word wouldn't have gotten out (a family member slipped and it spread like wildfire..........) - I feel like some people look at me as if to say 'why are you still walking around?' and I don't like it. (unless I'm being paranoid) Thus, I understand wanting to keep it to yourself. But - that being said - you are going to need help with certain things and you will be surprised how many people around you want to help!

Again, Ken - welcome! I can't wait to see what you can for ALS!!

~Christine
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
51
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Welcome to the worst club there is. But if you have to be here it is a good place. As a fellow slow progresser I look forward to your perspectives.
Vincent
Hi Vincent,

I'm sorry to ask this - but I'm asking a few people, since I am a slow progressor as well - where are you at in your abilities to do/not be able to do, certain things at this point in your diagnosis? (If you don't want to answer, I'm sorry for prying!)

Thank you!

~Christine
 

KenM

Member
Joined
Jun 21, 2019
Messages
22
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
On the issue of slow progression, it seems to me that while all of us PALS have a common set of interests, issues, and concerns that we need to stick together on, slow progression PALS do have a distinct set of issues to deal with.

For me, the biggest impact so far of my slow progression has been the challenge of dealing with chronic uncertainty. Because I have been on a plateau with my symptoms for over a year, I am unsure about how to proceed with things like when to handicap-access our home, financial planning, etc. It's a manageable issue, but it's definitely an issue. I read once in college a line that read something like "dealing with ambiguity is a sign of mental health" and if that's true all slow progression PALS are getting quite a mental health test!

It also seems to me that slow progression PALS have a much more dominant voice in blogs and forums like this for obvious reasons, our colleagues whose progression is more typical have less time to devote to support, advocacy, and communication. If that is true, it puts a special responsibility on those of us with slow progression ALS to make sure we speak on behalf of the 80% or so of PALS whose life expectancy is in the 2-5 year timeframe.
 
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Nikki J

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Joined
Mar 22, 2012
Messages
7,740
Reason
PALS
Diagnosis
04/2014
Country
US
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MA
Hi and welcome

As a very slow progressing person I agree about the uncertainty. It is of course a great blessing to be slow. It does make it easy to procrastinate. I will say that I have learned ( finally) there is great benefit in being proactive and making changes early.

We talk about conserving energy as so important. Often it is in the context of a fast progressing PALS aceepting help to dress, bathe or feed. Modifying things that are slightly challenging now will yield many benefits. Putting things into place with legalities will be a relief for everyone concerned.

I agree too it is incumbent on all PALS to do what we can for those who can not. Advocacy is one way , research participation is another, fundraising a third. We all have our gifts and strengths.

Did you apply to the NEALS CRLI? Applications close 7/1
 

KenM

Member
Joined
Jun 21, 2019
Messages
22
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
Nikki, thank you for the suggestion to attend the NEAL CRLI. I am looking into it and hope to attend. I'm being brought into some ALS Association national committee work and getting the 2 day deep dive into clinical research will be invaluable. Right now I'm just doing a lot of reading and listening to try to understand all of the dimensions of research funding, public policy, and lobbying related to ALS. There's a lot to take in. I was at the ALSA National Advocacy Conference in DC last week and that was hugely helpful too.
 

KarenNWendyn

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07/2017
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I am unsure about how to proceed with things like when to handicap-access our home, financial planning, etc.
Hi Ken,

Progression rate is unpredictable. All we know for sure is that we will progress. The advantage of slow progression is having more time to adapt to the changes and more time to stay ahead of them.

When I was diagnosed, I was convinced my progression was rapid. I had lost some weight, and once I regained it, my progression slowed dramatically. My neurologist told me he thought I was actually slow progressing. Now I think I’m probably average or on the slow side of average. But what does it really matter? The important thing is to keep doing what you can still do and be proactive ahead of changes.

I do recommend taking care of the advanced directive and all the financial stuff early. I also recommend banking your voice with Model Talker before you notice changes in your voice. The cost is minimal and you may never need to use it, but it’s good to get it done while your energy is good and your voice is strong. I’m afraid I waited a little too long, and the synthetic voice that was created for me is unfortunately suboptimal.

At some point, you probably will need to do some remodeling. If you chose to stay in your current house long term, I believe it’s a relief to get the remodeling done sooner rather than later. Things always take longer than anticipated. It’s also a good idea to take care of any deferred maintenance on the house in advance of a crisis. Same goes for any anticipated dental work, cataract, or vision correction surgery.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
51
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Nikki, thank you for the suggestion to attend the NEAL CRLI. I am looking into it and hope to attend. I'm being brought into some ALS Association national committee work and getting the 2 day deep dive into clinical research will be invaluable. Right now I'm just doing a lot of reading and listening to try to understand all of the dimensions of research funding, public policy, and lobbying related to ALS. There's a lot to take in. I was at the ALSA National Advocacy Conference in DC last week and that was hugely helpful too.
Ken!

Boy - am I ever glad you posted what you did! I think because i am a slow progressor - it is really messing with my mind. One minute I am waiting for the other shoe to drop, and then I think, 'why waste the time waiting?', then I do some things I liked to do, and I become exhausted -- but yet I still am doing 'pretty well'. Not where I was about 6 months prior to diagnosis. But it really, really is on my mind almost 24/7 (plus with the fasiculations that I can feel, and the ones I see and cannot feel) - it's always a reminder.

I'm actually seeing a neuro-psychiatrist tomorrow (Monday) who specializes in psychological issues with people who have diseases like ALS, etc. I'm nervous to go - and yet I need to figure this out. The slow progression, is truly messing with my head. Yet, I am SO, VERY GRATEFUL that I am a slow progressor and can be a voice to those who are not. I feel I can do 'better work' for those who need to be heard, once I get my head wrapped around this.

Ken, when I was first diagnosed, I had dropped about 40 pounds, my neck was hard to hold up, my one leg was atrophied more than my right -- and I didn't think I had much time. I had a large-ish home and couldn't figure out why I couldn't keep up with it as much as I once had. I am divorced and my children are gone. After receiving the news, I ended up selling my home, because there were a lot of steps and a large yard to mow and driveway to shovel. I also actually purchased a plot for my cremains, and filled out a living will, made sure my life insurance was in line, went through all of my 'memory boxes' for my children and organized them so they can have them at a later time. I was convinced that I didn't have much time, so I did get a LOT in order.

Once I started PT, got a J tube so that I could get better nutrition, I feel that I plateaued. And it is THIS that is messing with my mind. My physical therapist told me that the certain exercises she gives me will strengthen the muscles that still have connections and will compensate for the ones that don't and she expected me to get stronger or have a slower decline. So far, she is right. I HAVE to listen to my body, I HAVE to do my tube feeds and I HAVE to get plenty of sleep and naps.

I am thankful that you had mentioned that slow progression does something to your mind. If I could hug you, I would. Again -- I don't want ANYONE to think that I'm not grateful that my progression is slow. I am! But the trade off is the mental games and watching things slowly decline/plateau knowing that 'it's coming'. I think that anyone who is given this diagnosis has struggles of one kind or another. Once I'm in a better mental space and am able to take my mind off of 'me' - I want to do more for those who are in a steeper decline.

Thank you, Ken. I thought I was the only one who felt like this. I felt foolish about doing the voice banking - but now would be the time. That is another thing; because of the slow decline, I have postponed certain things that I do need to attend to. Like the voice banking, possibly moving in with my sister when I become less able to care for myself. BUT I must say that taking care of your finances now while you are still making sensible decisions would be THE thing to do. It really did ease my mind.

Again - thank you, Ken!
(sorry this is so long!)
 
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nona

Distinguished member
Joined
Oct 1, 2018
Messages
158
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
As a moderate progressor, I guess, I have to say that this conversation about the challenges of slow progression is enlightening. I'm amazed by how much we can learn from and share with one another. I'm one of those people who follows just-in-time planning. So far, so good.
 

KenM

Member
Joined
Jun 21, 2019
Messages
22
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
Christine, good luck with the visit with the neuro-psychiatrist today. I'm also glad to know that I'm not alone in dealing with the uncertainty of slow progression. And Karen your advice is well taken. I have already taken care of a lot of the advanced directive/financial planning/voice banking stuff. It's the really big decisions, like do we sell the house, that I am unsure of.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,740
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Speaking from experience here about the house. Decide and implement as soon as possible. Things are only going to get harder and it will be more work for your family if you wait and more strain on you Moving is omplicated and hard as you know. If you choose renovation remodeling takes time and is very disruptive.

I understand attachment to your home I really do and I kept coming up with reasons to delay moving ( modifications were not an option). When I finally had to move it was very hard and only managed with a lot of help. It could have been done much more efficiently if I had acted when I first knew it would be necessary.

You might consider having a home eval from an ALs experienced ot or pt who could tell you what you would need done to make your home comfortably manageable for you and your family
 
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