Disability.
What do you think of when you think of this word?
A Wheelchair? A Walker? A cane?
Someone who can’t speak? Someone who can’t see? Someone who can’t walk?
Do you think of one of these or all?

Multiple Sclerosis can influence your ability to do all these things, and if you are lucky you will be able to use a cane to walk for a little while, but most slowly lose the energy and ability to walk over time. It is a "neurodegenerative disease which interferes with the brain's ability to control your body." (Johns Hopkins Medicine, 2020)

My stepdad was given a double diagnosis of both Primary Progressive Multiple Sclerosis (PPMS) and Multiple Myeloma in March 2019.

In August Last year, He and my Mom moved to FL where they planned to enjoy as much time as they could on the beach (where they were also married). They made friends at church , in their condo building, and he supported a local high school assisting with athletic events.  NOW, one year later, things have changed... he can barely walk, he has a walker to get around their studio condo, and on good days can get to a chair on the pool deck. He is not able to get to the beach at all; last time he attempted, he ended up in the hospital. He can look across the street,  at the sand and the water, but he cannot feel the sand between his toes or the water wash over his feet, he cannot walk hand in hand with my mom through the sand like he once did.

Unlike other types of MS, Primary Progressive Multiple Sclerosis does not react to treatment like other types.  Approximately 10% of those initially diagnosed with MS are diagnosed with this type. It is the most rapid type which results in a steady decline from onset. 

When my stepdad was in a car accident and acquired a head injury, we thought this would change his life, it was the worst thing that could happen at the time. What was the worst affect of this? There were so many things that were difficult for him, but the most influential part of his circumstances with the TBI were the struggles that were virtually invisible to those around him because on the bad days, he would not go out. There were many bad days. Loss of memory, loneliness, anger, sadness, anxiety, confusion, and depression are all common experiences for those with TBI. Not to mention the seizures which he mostly suffered from at home. He was even afraid to go out due to his fear of having a seizure in public, losing track of where he was, his vision getting blurry, light sensitivity, his nervous system becoming overwhelmed and his anxiety getting out of control. Once he had an absent seizure which caused him to blankly stare and walk through the Walmart parking lot without anyone even realizing what was wrong. We faced judgement from people who could not see his struggle. There were those who thought he was drunk, those who saw his handicap car sticker and judged him because he “could walk” and that assumed he was “taking advantage of the system”. He had symptoms of trauma, but he would not get help because he did not think he had a reason, he had not been to war like many veterans who had these same symptoms, but he was experiencing a deep loss, the loss of his ability to live the way he once did, to think and to feel how he once felt, he had been through much in his life and this seemed to be the breaking point.

We thought we were losing him…Then he slowly gained a sense of himself back. He was not able to work due to the parts of him that were no longer functional, so he volunteered his skills as a ballgame announcer. He has a true talent and he used his ability to speak to support the local school athletic teams. I listened to him make the games come alive through his words, his enthusiasm, and his sarcasm. I was so proud to see him finding purpose, finding his voice in the midst of all that was lost, he could walk and talk…..

And Now, he is losing his VOICE….he is going through the unimaginable; struggling to speak for himself, to think straight, and to WALK straight…if to walk at all… can you imagine? They are telling him he may lose his ability to Walk and Talk all together….he will most likely be wheelchair bound by December…

Can you join me and my family to help raise funds to buy a Wheelchair Accessible Van so that he can continue to find life in what life has left for him? There is a world that is still awaiting him even with this disease that is taking parts of him little by little. Adaptive Equipment, Communication Devices, and Mobility Devices can give those with disabling conditions HOPE to function within their limits. Sadly the technology and equipment is only made available for a high price and insurance does not cover most of the expenses. 

Can you help us COME TOGETHER to give him a life outside of his room and to make his home safe for him as he continues to fight against this progressive diagnosis?

We are aiming to earn enough to pay for a down payment on a Wheelchair Accessible Van and to build a Wheelchair accessible bathroom within their studio condo. 

 

DONATE HERE

This is the GoFundMe link:           gf.me/u/yq4xmi

 

If you cannot support us financially, will you please leave an encouraging message or prayer so that my stepdad can know that he is not alone in this Battle against Multiple Sclerosis?

Know that you are deeply appreciated.