It's all starting to catch up with me

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Suzannah

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Deep in the Heart of
Hi all,

Well, as my title suggests, everything's really starting to catch up with me since being diagnosed with HSP last summer. For those who don't know, hereditary spastic paraplegia is a pure upper motor neuron disorder. HSP is not fatal, generally moves slowly and mostly affects the legs. I was (and still am) profoundly grateful that this was the diagnosis. It's kind of the "least worst choice" of the motor neuron disorders, I suppose.

I've suspected for quite a while that I might lose the ability to walk at some point, and I had somewhat reasonably come to terms with that. I knew I could still live independently, keep playing sports, keep running my business, etc.

But now things are moving very quickly, and I am having major symptoms and spasticity in my hands and arms as well as my legs. My hands are starting to be closed into fists almost all the time, my fine motor skills are terrible, and my arms are starting to draw in towards my chest. This changes everything.

Suddenly, I am terrified of the future. I just turned 36 last week, and all my friends are having babies or raising families or training for insane triathlons. And I am single, without any kids or a partner, worrying about how long I can safely live independently in my 2nd story unit, and whether or not I'll still be able to walk by the time I turn 37 next year.

HSP is not fatal, and people in my family tend to live a long time. The thought of 30, 40, 50 more years of decline and disability is pretty horrifying. Lately, I've starting having these little mini panic attacks, these moments of terror where it all hits at once and I end up bursting into tears. I feel terrible even admitting that, because I know that virtually everyone on the ALS board would give anything for more time. (My sincere apologies if I offend anybody with this post).

I guess maybe I'm just now hitting the grief stage ....
Thanks for listening.
Suzannah
 

Green Queen

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Suzannah...wow.
How long are we supposed to grieve, be frightened, be sad...as long as it takes. The whole process of having a terrible disease, living it day by day, will never go away.
You are allowed to feel how you feel because you can't say 'I've had enough now,' and it's over.
I have a non fatal type too, and there is a lot of guilt built in to that diagnosis. Eventually the guilt will turn to acceptance...I'm not there yet, but one day...
Have you a good support base? I hope and pray you do.
I'm sure you'll get many good tips here, I'm the least qualified to give advice, in the wrong country for starters, but I reckon you need to take the bull by the horns. Be in control of decisions required for housing etc, not let it become a necessity when there will be greater health issues to deal with.
My apologies to you if this is coming across badly, because I truly feel your pain.
As to living for years yet...make them count. That's my plan.
God bless you Suzannah, take care of you. Janelle x
 

Nikki J

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So sorry Suzannah. I think all of us with MND can relate. We all fear disability and I can see disability without a likely expiration date could be worse. And you are more than entitled to grieve tremendous losses. It is only in a forum like this that you could possibly consider your diagnosis something to be grateful for! Anywhere else it would be seen as catastrophic.

Now the pep talk! You know Beky has lived with this for a long time and has done/ does amazing things though not without struggle. You are a very strong and talented person and you will find your way too. I am wondering if you should be proactive about moving? Since you can plan a very long life it might be best to establish yourself somewhere you can stay happily and safely doing it early means you don't have to worry now or do something quickly nor would you be tempted to stay in an unsafe situation
Hope today is a better day
 

Nuts

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Suzannah, there is no need to be appologetic about your fears. Janelle is right, facing this without an expiration date is it's own kind of horror. On the other hand, as Nikki says, it may be more manageable than you think at this point. Make some plans to get yourself into a safe living situation that will accomdate you as you progress. Hugs and warm thoughts headed your way.
 

Suzannah

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Deep in the Heart of
Hi, thanks so much for the kind responses.

Green Queen, yes to trying to make the years count. I spent most of my 20s dealing with another time-consuming illness (now dealt with), going to grad school, and then building my business. So I didn't do a lot of the things people often do during those years, like travel, build a family, etc. I am trying to get some traveling in right now while I'm still relatively mobile. I went to Costa Rica last November, and I'm going to Mexico for a yoga retreat later this summer. I unfortunately do not have a very good support base here in my town. My parents and younger sister live about 70 miles away (110km), and I don't have a partner or very many friends right now. I do have a good health support base that I've put together - physical therapist, massage therapist, regular therapist, pilates teacher, yoga teacher, etc, so that helps at least.

Nicki, it's funny that you say that here is the only place I could be thankful for an otherwise devastating diagnosis. I distinctly remember when I received my diagnosis that you said "congratulations!" and I remarked how odd it felt to be relieved to get a diagnosis with the word "paralysis" in it. Heh. It is pretty weird.

Nuts, thanks for your kind thoughts.

I have been pretty proactive up to this point - Over the last few years, I've made sure to get my financial matters in order, get rid of any debt, pay off my house (almost!), save money, get disability insurance, get a handle on my chronic pain issues, etc. The house is the one sticking point. I bought it when I was 26 and mobility wasn't a concern then. I do love my house :( I had it remodeled a few years ago, and I picked out every single thing in it. I've been looking, and there is very little in the way of accessible housing in this town. I've been trying to figure out if I could somehow make minte accessible. I suspect that an exterior lift to the front porch might solve the stair issue, and the interior doesn't need too much modification. Of course, I live in a condo, so the HOA (homeowner's association) would probably say no. Can't hurt to ask, though, right ...?

Thanks again for your support.
Suzannah
 

Tractor Boy

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Susannah, I had a vertical platform lift (VPL) installed in my garage since my 1st floor is 7 steps up. It works great for my PWC. It's made by Savaria. It only takes up about 3x4 ft. Also widening doorways to 36 in. paid off for me.
 

Nikki J

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I think you may have some clout with the HOA because of the ADA. I have an HOA and I think we had to pay for a ramp when one of the homeowners became chairbound. Not only could the association not refuse the external modification they had to fund it. worth researching if there is a way you can modify your home and the location etc works if you end up unable to drive
 

billbell52

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HOAs are private associations and therefore the ADA doesn't apply unless the HOA opens up the HOA for public events like parties, fundraisers etc. For example, my HOA opens up the community pool several times a year for parties. I do not belong to the pool portion of the HOA. I could force them to put in a pool lift. I have my own pool so I don't do that. They may not pay for all of it but I would be surprise if they didn't allow you to cover the cost. Bruno makes a very good Vertical Platform Lift. It has a key so you control its use. I had one installed in my house to get from the ground floor to the second floor (9ft). It is setup to be used outdoors.
 

Nikki J

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Oops! You are right i did not mean ADA but FFHA. Sorry. And you would have to pay for the mods
 
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Tractor Boy

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Suzannah, I forgot to mention, if you get a VPL be sure you get a prescription from your doc and you won't have to pay sales tax
 

dkcarl62

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Suzannah, my heart goes out to you. I think your post touched the heart of everyone that read it. And also triggered our very fearful place - at least mine - that we don't know what the future holds, other then it won't be good. For whats its worth, all of us on this forum understand what you're feeling and we stand beside you and give you {{{hugs}}}}

Deb
 

Jeanau

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Oh Deb, your message states my thoughts exactly! The unknown is very scary for all of us!
 
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