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Hello to everyone, this is my first post, after spending a lot of time browsing the forums. It seems like a very supportive place.

I've noticed in these groups as well as in the local ALSA support group we go to, that some people are dealing with the stress and demands of a fairly rapid progression: that is, in 3 - 4 months, going from ambulatory to powered wheelchair. Big changes in a short time.

On the other hand, I have had symptoms since 2006 and began with foot drop in 2010. Although formally diagnosed in 12/15 it was mostly my procrastinating about it--my neurologist had urged my going to a specialist who'd make the diagnosis since 2011. Although symptoms have now spread to both arms and both legs, I can walk and I drive (with a modification to the car), go to work and APPEAR almost normal to the casual observer, especially if they don't see me walking much. What's happening to me is upsetting and frightening, as for everyone else, but in a different way, I guess. Varying degrees of dread and anxiety about the future spread over many years, while gradually losing the ability to do most of the things I enjoy. Lots of strangers asking if I hurt my leg, etc.

I have some issues and concerns that are totally different from those people who are struggling with a more rapid rate of change. I feel hesitant to even bring up some of these things, when other people have it so much worse. One thing I have some choice about is whether to move out of my house which is not ideal in terms of accessibility--and if so, what type of dwelling--house, apartment, CCRC?

I wonder if there are others with the same very slow progression, and if so, what are your primary concerns?

Thanks for any input!
 

Nikki J

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Hi Stephanie

Sorry to welcome you. I am slow progressing too and you are right the issues are different. I am, as I am sure you are, cognizant of the fact I am very very lucky. I am FALS. My sister had a more usual progression

Living situation is a big issue. I am moving to a normal apartment but one with public transit options including disabled and no stairs

I have no idea how long it will work but I do not need services currently and although I like elderly people I am not ready for a community where most people are 80 plus which is the case with the ccrcs around here.

Decisions about driving are hard too. My clinic staff all insist I am fine to drive. I think so too. I definitely want to stop in plenty of time

In a way it is harder to plan when you progress so slowly

And I get the what happened to your leg a lot. Often people think I had knee surgery!
 
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lgelb

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Welcome, Stephanie. There are other slowly-progressing PALS here and you should bring up any concerns you like. In terms of housing for the future, you might want to consider family, social supports, your age, financial resources, etc. I gather you do not live with a caregiver? A CCRC will not generally be compatible with a power wheelchair, but I don't know how far off that scenario is.
 

ShiftKicker

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Welcome, Stephanie. Sorry you find yourself here.

Please feel free to ask and discuss any issues that come up. Don't hesitate because you are finding your experience different or think it's not as urgent. You will find there are many people here with good advice or shared experiences.

Welcome, again.

Fiona
 

bkite

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Sorry to have you join us. I found the ALS Clinic that I attended for 2 and half years invaluable for counseling on what to expect next. The counseling there focused on the home situation when the time was right. We were reluctant to leave the home we put so much into an loved. However we made the decision to move and this has been a blessing to be in a totally wheelchair accessible home.
 

KarenNWendyn

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Hello Stephanie, and welcome.

I appear to be slow progressing too. My diagnosis was just made last year and my time course may be somewhat faster than yours. However, I started with foot drop and am still walking a year later and pretty much still independent. People often ask me if I’m injured or have had knee surgery. I too feel lucky when comparing myself to someone with more rapid progression.

There are definitely some concerns related to slow progression. I had to give up many of my recreational passions early (bicycling, skiing, trail hiking) and am almost at the point of having to give up playing my musical instruments, which saddens me tremendously.

So for me, the thought of having to go on living possibly for years without being able to enjoy activities which have been so dear to me and such a huge part of my self-identity is extremely depressing.

Sometimes I find myself wishing I could just progress rapidly and get it over with, but then I feel so guilty for thinking this when others are struggling just to get through their days, depending on others for their basic needs. Knowing that someday I too will be this dependent is its own form of slow torture.

May we both find gifts and joy in the years to come despite living with a disability.
 
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Laurie
Thanks for your thoughts. I do live with my husband, he's very healthy now, and helps me out a lot, but as he's 81 now, I feel as though I have to envision myself alone as a possible scenario. We looked at CCRC's, and I could see even if it were both of us, they'd not let me stay in Independent Living once I needed a wheelchair, and Assisted Living might not be the right level either. Some of them will not include the highest level of care if you come in with a pre existing condition like ALS, but this seems to vary from state to state. I'd rather live in the same dwelling as my husband. Of course, if he suffers a debilitating illness as I'm in need of a lot of help, it would be like the perfect storm. It all causes a lot of anxiety over the basic fact that you cannot predict the future.
 
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Bruce

Thanks for your reply . . . I love my ALS Center staff and this is likely to be a topic when I go back in a few weeks for my next visit. I am trying to balance out the pro's and con's of a more accessible home (but with the usual burden of upkeep) with an apartment or condo, where someone else fixes things when they break and mows the lawn. Now, when something's not working, my husband knows what's wrong and how to fix it or who to call; but as he's 81, I have to plan ahead for the possibility of it's all being on me. It is heart breaking to think of leaving our home, as tending my gardens was something I used to love and find relaxing. Gardening is starting to be a bit stressful to keep up with, and I've lost my balance and fallen a few times. Thank goodness it was onto dirt and grass!
 
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Atsugi

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Stephanie, our community has learned something very important. Keep this in mind.


Do not fall.


The average person, when falling, will instinctively adjust the head and torso position on the way down, to prevent serious damage. But if your muscles are slow or weak, you can end up dead or seriously broken for the rest of your painful life.


Just a reminder to everyone: wheelchairs and patient lifts are good. Falling is bad.
 

Nikki J

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Hi Stephanie
Mod note: please don’t quote unless absolutely necessary. If you need to direct a reply do so with username or the name they sign with. Quotes lengthen a thread and it is difficult for PALS using alternative navigation methods such as eye gaze to scroll

Thanks in advance!
 

bkite

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Stephanie
We moved into a single level condo in a Home Owner Association, giving up a home half an acre full of vegetable and flower gardens. The condo is completely maintained on the outside of the home, yard and driveway by the HMA and Joyce continues to enjoy gardening on a smaller scale growing berries, vegetables and herbs in pots in the small backyard and has upgraded the flower beds in the front.
 

IgorZilio

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By all accounts mine seems to be a slow/atypical form of ALS as well. Took 1 year to show some pathological EMG alterations, it doesn't seem to be as devastatingly fast as the 'normal' course of ALS. I just moved and my new neuro even said: "I'm supporting an ALS diagnosis because you fit the criteria and nothing else seems to explain these alterations but I'd like to wait to give you a 100% certain diagnosis".

People around me were happy of course given the very high likelihood of a slowly progressing disease, but I actually hid what I felt with that. I'm young, have no siblings and most of my family is far from being young, including my parents who also have their own ailments. I am not sure what a slow progression would mean to me in the long run.

Who would take care of me? I really can't answer that, and there are no solutions that I can think of. It actually makes me more anxious about the future than if it was a fast thing.
 
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KimT

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I'm also considered a slow progression case. I tend to think it might be because my neuro friend "discovered" it so early and sent me to Mayo after he did an EMG in his office.

I try not to take any day for granted. I have no husband, no kids, no family except an 82-year old brother who lives in upstate NY.

I was able to get my PWC and Trilogy before I actually needed them because my neuro thought that not having a CALS would make it much more difficult as I got more disabled.

One thing I did learn about progression rates is that they can change. My friend, a PALS, took a long trip overseas about 18 months ago. She walked, on average, about 10 miles a day (she was Bulbar onset.) She was still working as an attorney up until a year ago. She is now on hospice and Trilogy 24/7. She started out with very slow progression, they it became faster.

Stephanie, it appears that you have been progressing very, very slowly for a long time. Guard yourself against falls and I expect your progression will continue to stay slow.
 
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Igor, I'm glad you posted that, as I share some of your feelings. Like you, I was clued in early as to the diagnosis because way back in 2006 it was nothing but cramps and muscle spasms in one leg, that other people might've ignored; and first signs of foot drop in 2009-2010 but again very subtle and many people would've ignored. I had two neurologists treat me dismissively, but the 3rd one did all the EMG's and said ALS was definitely possible. I think some neurologists are personally uncomfortable with ALS=likely patients because they don't want people to go off the deep end unless the diagnosis is certain. Others are rushed and ALS evaluations are probably longer visits because of all the explanations, reassurances, etc.

1. I hide my real feelings about this because there's no reason to get people around me upset, or having people react strangely (like avoiding my company) because of their own personal reaction. I also don't want people to see me at this point not as I am today, but as my diagnosis.

2. I have a lot of fear about who will take care of me, too. I envy the PALS who have a lot of family around them who are supportive. I'm one of 6 siblings, but we all scattered as we got older and are spread from NH to NC. My husband is very devoted, but if he were not around, there's no one who would fight my battles for me. I'm a health professional, I know how variable the quality of services can be, and I often end up being an advocate for my family members. I would badly need someone to play that role for me when it's my turn.
 
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Hi Kim,

I appreciate your thoughts. And I especially appreciate other people sharing their timelines and how they've adjusted over time.

About the rate of progression being stable, I think that there is so little that is truly known about ALS that that's one of the generalities you always hear, but it's probably just anecdotal evidence. Speaking for myself: on one hand, some changes are more obvious: e.g., muscle wasting in a hand or leg. Other changes are taking place steadily too but are more insidious and that I tend to be unaware of and that surprise me when I discover they have happened: e.g. wasting in the muscles of my trunk that cause me to need to sit and rest more frequently. So in the past, I thought there was a plateau for a period of months or years, but afterwards realized that something was always deteriorating all along. The ALSFRS is kind of useless because it only measures big changes: I KNOW things are changing even while the score is staying the same.

One thing that seems to cause a bit of a drop in function for me is either an illness with a fever (I had two of them in 2010 and 2011 and almost right away noticed worsening of foot drop), and overexerting myself: I went to my husband's reunion and did so much walking that I was worn out--afterwards I noticed my baseline had worsened. Back in March, we took his granddaughter to New York to have dinner and take in a Broadway show. It was much more walking than I usually do. Again a drop in the baseline. Now I try to avoid any situation where I'd be trapped into walking too much. I needed foot surgery in 2009 and I suspected the stress of surgery sped things up. The nurse in our local ALSA support group said she noticed that with other people.

We really have so little useful information about this disease! However, I think that's true for most progressive neuro diseases. All they know is how to describe what's happening in the body--not how to reverse or prevent it.
 
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