What a year.. with the best yet to come.

This has been quite a year, hasn't it? I wanted to thank those of you who sent your kind thoughts and expressed concern around my last post. The boyfriend is doing well, physically anyway. Unfortunately, his recovery has made him restless. I wonder if that is the worst thing, the inability to do the things you want. Even the most basic things. The experience made me wonder about how much longer I have the ability to do what I want.  

In the last few months, I have seen the FSH progress more rapidly in my body. Or at least it feels like that... the same as when you get to the end of a roll of toilet paper. The end seems to come faster than ever.

I am struggling more now. With stairs, chairs, cars, you name it. It feels like parts of my body are clamped with a vice. But I would take that over the parts I can't feel at all. Nothing worse then not being able to will yourself to move.

But on the upside, and there is always an upside, I am happy. This is the time of year we reflect and as I do so, I can only see the support of my friends and family, the beautiful children in my life who remind me of less complicated days and the many outlets of hope and happiness I have discovered.

In the midst of change, I have chosen to take on an advocacy role with my FSH. This is the time where fear has no place. For all those people with FSH like me who have spent time quietly hiding their condition hoping if they didn't say anything no one would notice, I want to let people know of this condition. I want to let people with FSH know there is nothing to be ashamed of. The more mainstream we make this condition, the easier it will be to live with it and more importantly  find a cure.

This leads to the theme of this post, hope and a future without FSH. We are getting closer. This recent partnership between Fred Hutchinson Cancer Research Center and GlaxoSmithKline to develop therapeutics for FSH is a huge step in the right direction. There is no more 'if' for a treatment, now it's 'when'.

I will continue to write in the new year and continue to find new ways to spread the word. I'll keep you posted as this is a journey we share together.

A Needle in a Haystack

Can you imagine what it would feel like to have a disease attack your body while you helplessly watch, only to find out you could have done something to stop it, or at least least slow it down?

While there is no cure for muscular dystrophy (yet) there are some things one can do to help.... I think.

I say that with uncertainty because the suggestions out there of things to help seem to have equal voices saying they don't help.

Exercise, how much and what type. What works for one, doesn't work for another. I attended a muscular dystrophy conference a few years ago where a researcher provided results from a study on exercise and the impact on muscular dystrophy. She said the one type of exsercise that proved to help increase strength in patients was aerobics, 20-30 minutes three to four times a week. This would be great if you don't have a foot drop, aren't already suffering from decreased mobility or fatigue.

I was also told once you experience the 'burn' when you are exerting yourself (swimming and cycling seem to be the preferred sports) you must stop as your are irreversibly damaging you muscles. Then I was told by some of my fellow FSHers, their doctors said you have to push yourself past your boundaries to move them.

Take this article I just came across as I was surfing the net. Calcium and CoQ10? Easy and inexpensive to purchase. No medical professional told me that.

How about the effectiveness of stem cell treatment? My neurologist had no information for me. What I learned, I learned from Russ Kleve's blog who went to China for treatment and documented each step of his treatment. Thank goodness he took the time to share his experience.

What to do but keep researching and sadly, not just relying on your doctor. Above all, listen to your body. Everyone with this condition is different and there seems to be different solutions at different points in the condition.

I have tried alternative medicines to help. It's not for everyone as there is a lot of blind faith that goes along with it. I am currently in Ayurveda treatment which involves taking four pills twice a day and an intense massage with strong herbal oil. The pills are made up of various herbs and spices. The basis of this treatment is increasing circulation and making your stomach function properly.

I am in the second month of treatment and while I haven't noticed a difference (except joint pain which he says is good as it means my muscles are getting stronger) he does see a difference in the back of my legs. He wants to see this work as much as I do. He believes more than I do, saying I will see a huge difference in nine months. Nine months, can you imagine?

I'll keep you posted.

Or, you could do nothing. I have a good friend with FSH who wouldn't know anything about the research or any other stories if I didn't tell her. She is progressing faster than me in some ways and not in others. She is happy and in all other respects, very healthy. The greatest joy she has is her little girl who is as feisty as her mom and as energetic as she once was. She hopes for a cure, but waits for nothing.

In the meantime, I share my experience of what has worked for me above all else. Being positive. I spent a lot of time figuring out what makes me happy and taking every opportunity to do those things. Spend as much time laughing as you can, and surrounded by people who make you feel good. It makes all the difference.