Hereditary Spastic Paraplegia

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Hereditary Spastic Paraplegia
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I’m new here!

Hi, my name is sarahteechz. I don't actually have MS. I have Hereditary Spastic Paraplegia, a neurodegenerative disease affecting pretty much...everything, but there was no option for that. I recently lost my husband and my career and just need some support, I guess.

#MightyTogether #Grief #Migraine #MultipleSclerosis

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I'm new here!

Hi, my name is GatorHater. I'm here because
I began falling in 9/2020 progressed rapidly and now bed bound 90% of time. Loss muscle mass, fine motor skills, ability to walk, care for self independently. Have constant numbness, dead weight heaviness, neuropathy, constant feeling of being squeezed like I have a body cast on from chest to pelvis. At first dx with CIDP after a year of IVIG no change actually worse as time progressed. Then dx w Conversion Disorder/FND by a different dr but my original neurologist says no. Now I’m recently dx w Hereditary Spastic Paraplegia but I just don’t know anymore. So I’m here to research and advocate in hopes of true dx and treatment. 🤨#MightyTogether #HereditarySpasticParaplegia

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Reflecting on Life

Having a rare disease brings about so many thoughts and emotions, including depression and anxiety. My rare disease involves a progressive neuromuscular disorder with symptoms that present as an combined overlapping of ALS, complex hereditary spastic paraplegia, spinalcerebellar ataxia, and MS. They have yet to figure out exactly what it is, but while the answer is still out which rare disease I am living with that impacts every part of my body that is still actively there everyday mixing in with my autism and autoimmune disorder. It has made me wonder bout so much, including but not limited to - how to gain and keep a career, what it would mean to go on disability, how to be sexually intimate, how to be active, how to maintain and grow my independence, how to pursue my passions, and most recently with enter the journey of fatherhood - how I will navigate that. So much time and energy goes into managing, preparing, adapting, hoping, struggling, and adapting, adapting, and more adapting. All this while there are so many successes, joys, milestones, blessings and more in the unknown at the same time of the fear, anxiety, pain and challenges. And even though I have differing abilities and life may look different in many ways, it doesn't make me any less capable or less than anyone else. I have found connecting and learning from others helps along this journey as well as sharing.
So I ask how do you adapt things in life?
What are your joys and successes?
What are your fears and challenges?
What are your hopes and dreams?
How does a rare disease or differing abilities impact your life?

#Autism #RareDisease #RheumatoidArthritis #Disability #MentalHealth #MightyTogether #CheckInWithMe

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Letting go of your past & future identity

I'm losing feeling in my legs, a little more every day. Along with that, I feel like I'm losing a little more of the dream of the life I delayed to be a responsible parent. I'm having a hard time letting go of those dreams, and the life I took for granted before my diagnosis, without going into a full-on "F the world" depression.

I know that life throws curve balls at us all every day. I've made it this far, but my perspective seems different now. I used to wake up with a clear head, and a bright outlook on what the I can do in the world, and what the world may reveal to me, but now I feel like it will just get darker every day from here on out.

I've been trying to see things now, rather than recreate a vivid vision of a future that could easily be taken from me, but now sucks too.

I know that's a judgement, but nothing takes your masculinity more than having to ask your children for help after falling down in the street. My identity as a strong, self sufficient father to a patient who needs ongoing care.

I'll take it one day at a time, but this is tough. #HereditarySpasticParaplegia #Depression

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Knowing the unknown

Today as I wake up, I realize again that my body doesn’t like me. Diagnosed as a child with cerebral palsy, 39 years later to be diagnosed with heredity spastic paraplegia, but waiting on the type. Doctor said it may be an unknown type because my symptoms are so rare. Then fighting chronic fatigue, leaky gut, migraines, Hashimoto’s disease a whole host of other issues, it’s disturbing not to know what’s wrong. I am doing my own research, trying to find an answer myself. It sucks when you don’t know. It’s like the monster from the deep. A faceless creature that is making life go from walking to being in a chair full time in rapid fashion of 3 years. #ChronicIllness #ChronicFatigueSyndromeampME #HereditarySpasticParaplegia #HashimotosThyroiditis #ChronicPain #UnknownIllness #CerebralPalsy #LeakyGut #Anxiety #Wheelchair

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Rare Neuro-motor disease #HSP

I have Hereditary Spastic Paraplegia which means that most people just think I walk funny. This disease causes severe spasticity in my lower limbs that it is so difficult to bend my knees & lift my feet to just walk, that I fall frequently. Because of how much I fall, how much I hurt every day, & the fact that medicine I take to help me move, also makes me very sleepy. I have a masters degree & taught in the elementary grades until my disability caused me to take an early retirement. Most of the time I’m very bored & just watch tv & play games on my iPad. #HereditarySpasticParaplegia

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Has anyone had a baclofen pump surgery? I’m having it soon to control my muscle spasms, and I’d like to know what to expect.

I have hereditary spastic paraplegia and it’s now become necessary to have the baclofen pump implanted.

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