Checking in

[Sprawl]

Haven't posted since shortly after my diagnosis in January. It has been busy and chaotic filling out all the paperwork and going to appointments. Just wanted to touch base briefly with you all. And say thanks again for all your insight and advice leading up to my diagnosis.

 

[Nuts]

Sprawl, I understand how chaotic the early months are, and I'm glad that you are checking in now. How are you doing?

 

[Sprawl]

I am doing ok, the frustration of my mind saying I can do stuff and my body saying NOPE is getting to me though. And then of course the anxiety of the "wait and see" plus the trying to prepare things for my family is taking a toll. progression is minimal I believe at this point, legs have become unsteady but i am still walking and doing most things without help. The hand strength is down significantly (last test registered 12 lbs grip strength) but arm strength has remained about same, diminished greatly over normal but hasn't changed much in last 3 mos.

 

[Nuts]

Please be careful about those unsteady legs. So many PALS end up falling and seriously injuring themselves before agreeing to use mobility aides.

I can only try to understand the frustration of a body that won't respond.

Do try to find whatever joy you can in a day.

Becky

 

[Sprawl]

We have been busy, I have a 10 acre hobby farm we are working to set up so the wife has some extra income. The pic attached is several months ago when we started planting. I now have around 500 tomato starts and 200 pepper starts going in the greenhouse, almost time to get them in ground. And we are also setting up a raspberry and strawberry U-Pick patch to complement our already established Juneberry patch.

 

[Nuts]

I used to of a hobby farm. I think I'm past that now, although I'd still like a small greenhouse or at least a cold frame. What an exciting thing! Will your wife have help with it as your condition progresses?

Becky

 

[Sprawl]

Possibly, so far friends and family have been very helpful. But luckily we are trying to get as much perennials in that we can, that way its mostly just maintenance needed.

 

[affected]

Looks like a great project

 

[frankb]

I am envious ! ! What a greenhouse ! !

 

[Sprawl]

Thanks all, with some help from family and friends we got our 230' x 100' strawberry patch built and planted all 600 plants this weekend!

 

[konagirl]

Sorry you are here Sprawl. Just wanted to say hi, as your story is very much like ours. My husband is also 37, we have two small children (8&3) and while he is also unsteady walking due to severe spasticity in his legs, it is his hands that fail him the most.

 

[soonerwife]

That's fantastic that you guys were able to accomplish all that. How do you keep the birds out of your strawberries?

 

[Sprawl]

Kona, that is exactly how mine is but its not both hands, just my right. My left seems to be unaffected so far. The legs for me is just unsteady, no drop foot or anything so far. Losing use of your dominant hand is so frustrating. Its hard but i get a little better each day learning how to use my left hand. I believe my progression is somewhat slow luckily but its too early to tell i believe.

 

[Sprawl]

Sooner, we just use bird netting draped over them, seems to work well.

We dont use anything on the Juneberries because of the amount we have, the birds don't affect them much.

 

[Sprawl]

Sigh, I need to vent a little...

Some days, ok most days, this consumes me. I cant get it out of my head, its all I think about, and despite my efforts it is all I talk about too. I know how annoying this can be, when someone does that, but no matter how hard I try it still happens. I feel guilty because of how much it consumes me. It is like being afflicted with ALS is becoming my identity, and that is not who I am nor who I want to be, I want to just be me and enjoy what time I do have left with my friends and family. But my mind won't let me. I feel that if I continue down this path, I will just push everyone away. I can tell by the looks I get from my wife it is wearing on her badly. I do not know what to do, I just feel lost right now. When I talk about it, it is not really feeling sorry for myself, it is more about the frustration with trying to do things... but I talk about it constantly, and honestly I am tired of hearing myself talk about it too, but I cannot stop.

Sorry I am rambling but I gotta get this out.

I want to be the same strong person for my family I have always been, but right now I am failing miserably! Which then turns some of the frustration into anger. luckily I am able to keep the anger internal so others do not see that part. I just wish I could do the same with the rest. I guess I just have more practice holding anger in, as I have done that my whole life. I have never been one that was able to show emotion very well, but apparently I am not equipped to handle this. Well at least I got you guys to vent to, I do not want to burden my wife, family or friends anymore than I already do.