New from Miami, Florida
Posted: Fri Dec 02, 2016 7:10 am
Hello, my name is Wendy and my husband was diagnosed in 2009 when he was 33 years old. We live in Miami and have 2 boys, 11 and 3.
My husband is a musician, he founded and directs an organization dedicated to percussion. He keeps really busy and active, and is an amazing dad. I worked in architecture many years, and although I always helped him, I left a firm at the start of this year to work for his organization full time. We love it because we're always together. That works for us because we've been together since I was 15 and he was 17. We're very lucky he's done so well so far after his dx.
That said, there are waves of setbacks which always prompt me to dive deep into "research mode". Our first was at the start when his worst symptoms were numbness and extreme fatigue. I don't think I have to explain here how this type of fatigue differs from regular fatigue. It was debilitating, disruptive to his normal life, and made him very depressed. And it was unpredictable. One week we were riding bike all over DC and the other he was in bed for 2 days straight to survive the week. No one understood. It was a rough time. Then our youngest was born, and it took him one year to sleep through the night. Not sleeping well was extremely destructive to my husband and it also coincided with the first year of his school/organization. Amazingly, diet and a supplement routine (and that cute baby finally sleeping!) did the trick and his fatigue was gone.
However the last 2 years, although he has plenty of energy, has even been working out on and off, and is otherwise symptom free (numbness gone), his legs have deteriorated (spasticity). We noticed the line: summer of 2014. We went back to DC and had to use a wheelchair at the museums and taxis to get around. When you repeat the same activity years layers it's when you can see changes the most. Since then it's an up and down with his legs. Good weeks and bad weeks. Overall there is a different nature to his gait, even in good weeks. And long distance walking is out of the question.
So this is my new focus, to find out how to help him with this which brought me here. I found a thread where it mentioned too much vitamin D3 could increase spasticity in legs. And the timeline makes sense for him to be true. However, his almost miraculous progress in all else is also due to diet and supplements so that's the balance we have to figure out.
There is also the possibility that this is just his illness progressing, differently at each stage. I accept the randomness, but always try to continue reading and having a plan. His doctor wants to try and see if a Baclofen/Ampyra routine might help. This will be the only time other meds have come into the picture so I'm concerned of side effects. He is otherwise a very healthy person. Eats healthy, keeps a good weight. Nothing else going on except for his MS. Last time she suggested meds for his fatigue we solved it in alternate ways. I'd like input in these meds too because maybe our resistance is unwarranted and he's missing out on something that could make a big difference.
I should add that he has been on Copaxone from the start, and has had stable yearly MRI's since time of dx. His doctor suspects the illness began in his late 20's until a major event brought it to the surface. He had caught a very bad cold that fall of 2009, and had a high fever. The fever suddenly brought up all the worrisome signs of MS. MRI's confirmed small lesions in almost all areas along the spine, plus some in brain and eye area.
Thank you very much for listening!
Wendy
My husband is a musician, he founded and directs an organization dedicated to percussion. He keeps really busy and active, and is an amazing dad. I worked in architecture many years, and although I always helped him, I left a firm at the start of this year to work for his organization full time. We love it because we're always together. That works for us because we've been together since I was 15 and he was 17. We're very lucky he's done so well so far after his dx.
That said, there are waves of setbacks which always prompt me to dive deep into "research mode". Our first was at the start when his worst symptoms were numbness and extreme fatigue. I don't think I have to explain here how this type of fatigue differs from regular fatigue. It was debilitating, disruptive to his normal life, and made him very depressed. And it was unpredictable. One week we were riding bike all over DC and the other he was in bed for 2 days straight to survive the week. No one understood. It was a rough time. Then our youngest was born, and it took him one year to sleep through the night. Not sleeping well was extremely destructive to my husband and it also coincided with the first year of his school/organization. Amazingly, diet and a supplement routine (and that cute baby finally sleeping!) did the trick and his fatigue was gone.
However the last 2 years, although he has plenty of energy, has even been working out on and off, and is otherwise symptom free (numbness gone), his legs have deteriorated (spasticity). We noticed the line: summer of 2014. We went back to DC and had to use a wheelchair at the museums and taxis to get around. When you repeat the same activity years layers it's when you can see changes the most. Since then it's an up and down with his legs. Good weeks and bad weeks. Overall there is a different nature to his gait, even in good weeks. And long distance walking is out of the question.
So this is my new focus, to find out how to help him with this which brought me here. I found a thread where it mentioned too much vitamin D3 could increase spasticity in legs. And the timeline makes sense for him to be true. However, his almost miraculous progress in all else is also due to diet and supplements so that's the balance we have to figure out.
There is also the possibility that this is just his illness progressing, differently at each stage. I accept the randomness, but always try to continue reading and having a plan. His doctor wants to try and see if a Baclofen/Ampyra routine might help. This will be the only time other meds have come into the picture so I'm concerned of side effects. He is otherwise a very healthy person. Eats healthy, keeps a good weight. Nothing else going on except for his MS. Last time she suggested meds for his fatigue we solved it in alternate ways. I'd like input in these meds too because maybe our resistance is unwarranted and he's missing out on something that could make a big difference.
I should add that he has been on Copaxone from the start, and has had stable yearly MRI's since time of dx. His doctor suspects the illness began in his late 20's until a major event brought it to the surface. He had caught a very bad cold that fall of 2009, and had a high fever. The fever suddenly brought up all the worrisome signs of MS. MRI's confirmed small lesions in almost all areas along the spine, plus some in brain and eye area.
Thank you very much for listening!
Wendy