Hereditary Spastic Paraplegia

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

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

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

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

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