As I have shared before, Sam had to go to the hospital this last week, fully depleted from her ever present nemesis...UTI. UTIs are very common in this stage of MSA-C, from the self catherizations the patient must do multiple times in a day. Every time that Sam is hospitalized, it takes a little longer to recover, a little longer to get her strength back and carry on. The days that lead up to a hospitalization are the darkest, the days that we have to hold her up as she so often has in her life for us. Sometimes though, from this darkness comes light! We struggle so much in trying to get things done for her, the expense of living with such a disease is great, so trying to get what she needs in a timely manner does not always come to fruition. Out of this last stay, we have finally been offered a ray of light, a guide to show us a way to make her life better. Sam is in a wheelchair now, about 99% of the time. A power wheelchair is very heavy when lifted several times a day, even when taken apart. We have been trying to get ramps done both out of the house and into her truck so that we can take her out and keep her spirits up. To this date, she seems to be a prisoner of not only the disease that is ravaging her body, but of the house. The last time I was able to take her out totally I hurt myself pretty badly, so we have not been out much since.
MSA in any form is very painful as it progresses, the aches and pain from the tremors, the constant movement of flexing the muscles is like us having spent the day in the gym with a physical trainer...all day long! Some of the progression of the disease is taken as just that, progression, when in reality it is from the pain killers and L-Dopa that has to be taken on a regular basis. Always living in a fog can cause alot of problems. At the hospital though, as we have been searching and praying for a better quality of life for Sam, God sent us an Angel, one of many to come these next days. There is a pain management that is possible for MSA-C, since the neuropathy is extreme and no longer caused only by the nerves but from the brain, nerve burnings are no longer an option. There is a patch, and other treatments that could allow Sam to have some better long term treatments of the pain without the narcotics she hates. We have an appointment this month!
The angels did not stop there though. Since Sam had such a long stretch this time of not going to the hospital (almost four months), her physical therapy had ended and her nursing care had dropped to about half an hour once a week to check her PT/INR (Sam also has a blood clotting issue and has to keep blood thin) and most outside help had ceased. In again, from the hospital stay, comes a new appointment to bring in her physical therapy. The day after she was released from the hospital, the therapist evaluator came to her home. Not only will physical therapy start again twice a week, but an occupational therapist will be brought in. For those of you just learning of this disease, this is an awesome thing! It is the key holder to the jail that can open the doors again! This type of therapist will come in and evaluate her home, be able to bring in contractors to make her bathroom handicap friendly, will put in ramps at the doors AND a lift for her chair on her car! A prayer, a dream, an answer.
So out of the darkest hours come the brightest dawns. Hope, life, dreams and prayers answered. Let there be light! Thank you GOD!
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