Dystonia: Get the Facts on the Syndrome and Treatment

We get most of our information about Dystonia from the Dystonia Medical Research Foundation but this article explains it well. “Syndrome” is correct but I refer to it as a disorder. It is rare and this is general information. I have Myoclonic Dystonia or Myoclunus which is the sudden jerking like movements you see in my videos on YouTube. The link to my channel is in the menu. https://www.medicinenet.com/dystonia/article.htm#

Not hot enough….

I like to wash my hair in nice warm water but my water isn’t staying hot long enough for me to do what I need to do to my hair. I had the same problem with washing my daughters’ hair and had to use a bottle of warm water to rinse the conditioners out. I forgot and shampooed my hair and by the time it was to rinse the second time, the water was too cold. You know. Warm on the skin but too cold for the scalp. So I got some bigger plastic bottles and warmed me some water up in a tea pot and it was too hot. At this rate, we can take a 30 minute shower which is good but we need a hot water tank like he said. Our water shouldn’t get that cold that fast.

Right now I have washed and used two conditioners. Now I am doing the first deep treatment. I like this Cantu product a lot and it is the only one by them that I use. It’s in the Natural Hair – Products we use section. It has to stay on for thirty minutes but smells so good. If you can’t see the label in that picture, it is called Cantu Shea Butter Deep Treatment Masque which you can get a Family Dollar sometimes. It cost around $9 but will last you a while depending on the lenth of your hair. I cover it with a plastic bag rather than a shower cap because I have so many plastic bags in my house, I might as well make some use of them. Everyone says I am cheap but why go buy some shower caps when the plastic bags do the same thing?

After I rinse the Cantu out, I have added another quick Masque just to make sure my hair is well conditioned and looks healthy. I use Eden Body Works Natural Hair Masque Treatment. It is also a deep conditioner. You leave it on for just 15 minutes unless somebody is in your way. I would say thirty minutes at the most. I also agree that you should never leave any product on your hair for more than an hour. I have done this and the results were terrible. Made it less manageable. Eden Body Works is Paraben and Sulfate free and both products are water based meaning the first ingredient on the label says water (Aqua) and in fact, all the products I use are water based products and 90% all natural. I always look for Paraben and Sulfate free products for my hair that are water based and add moisture not grease or heavy oils. I try to use things that are light on the hair to prevent build up and make whatever I am doing to it last longer.

I have like 10 calls to make this morning mainly for me a my daughters’ appointments. We have a lot. I have one Thursday and one Friday. Not making any more for January. I don’t want to over book and wear myself out. No matter what I do or say, I am still disabled and functioning at half of my abilities. I do my own hair still and will as long as I have the strength. I don’t rely on help from others because I am on a time schedule even though I can no longer work. Best way to put it is that my job now is to make sure I keep, make, and reschedule appointments for my house hold and to go to the doctor regularly. Specifically regarding my eyes and my thyroid. My ankle being swollen is from me doing too much but the eye thing I don’t understand yet and I don’t believe it’s just my allergies. The next time it is swollen I may go to urgent care if I have enough time.

I know these post can get weird on Twitter. Meaning it’s posting while I am on there. That is because I schedule them too. That way I can keep new content here daily. It is easy to add content so through out the day, as I run across new information or find something interesting, I just share it either on here or on Twitter which by the way I still love but I accidentally unfollowed someone. I feel kind of bad but in a way, it’s not like I knew them or anything. I don’t know anyone on Twitter. I just like how fast I can get information about health and the news. I am also on YouTube but only the sick part. I never made a video of me well but I am going to do so after I do my hair. I will add the link to it even though I don’t maintain my YouTube channel. My handle is Twistteddollface. On PS4 I am kushkola313 and BlackWhiskey313 but I don’t really play online. My husband does. I will add all this to the menu too. Contacts are important for business right now and we are running two websites and he is passing out fliers. He ended up smoking and thinking about how his boss was treating him and quit yesterday. We are trying to go into business for ourselves. Self-made. He won’t be sitting here playing the game all day and neither will I. We got too much stuff to do. Generate more money until he can find a better job or continue doing what he does best. Drive and grow. Making plans for a garden but we have a Pitbull in the yard. I hate when they pee on the fruits and vegetables.

In my window in the kitchen has enough room to start growing some herbs. I used to put the little baby plants there because of the sunlight. They did good. Mine. The ones I got from someone else must have gotten stressed and they did very poor with that amount of sun and water I was giving them. My cousin is growing some of everything but lost her plants because the Christmas tree was blocking the light. The ones she got left I can get a piece of and finish rooting them in water before we plant them in the dirt. We are also looking into edibles. I get quite a few good recipes from Leafly that I haven’t tried yet. Cookies are okay. Ribs would be a lot better. I did a Pepsi rib that actually tasted like Pepsi because it was marinated overnight. So tender.

I am using the phone to post today because everyone is sleep. I didn’t smoke before I went to bed and woke up cold because someone decided it was too hot and opened the window. Yes it is warmer outside for now but not so warm that you need to open your windows yet. I have on my hoodie again for this reason. His blood pressure must stay high or he just like cold air when he sleeps. I know it makes me stiff so if I can’t move, it’s his fault. And he is going to have to get me something to relax my muscles and get rid of these aches and pains. Shop opens early so I should be fine. Hot water is better now. It could be because it hadn’t been used all night. I don’t know but I do know that I need to start pricing hot water tanks. We are going to need one right away.

Using fore arm crutches

Doing your blog from your phone is easy but it’s too small for me. I need to update the tablet with these pictures so I can write from it. The website we used the lap top for. I haven’t been able to read any blogs yet. I just got back on WordPress. Thank you for reading and for the likes and follows. I am sharing this on Twitter and Facebook.

I am learning how to use these and carry a purse at the same time. For the doctors appointments. I just woke up because I forgot to take my medicine. Technically I have 3 hours to kill. The water is helping with the dry mouth from the pills so I keep some by the bed.

I told my doctor instead of being in a wheelchair, I wanna use these. These are covered by Medicare but cheaper than the standard. Standard are 8lbs. I can’t lift 8lbs so I could barely use them. These were special ordered. I picked them out on line. Now I am get ready to start my on physical therapy. I just got to look the exercises up for my legs. I need to do them every day now to get ready for spring. I wanna get out the house more this summer.

I can use these but do need more training. The more I go out, the better I get at using them but when I have paperwork, where do I put it. In my purse which holds everything I may need when I am out except a flashlight for a key ring so I can unlock the doors easier. Need to order one.

The purse has all the medical stuff in it. Not too heavy to carry. The more stuff I have to carry, the more challenging it is. I am free for two days before my next appointment and might go out tomorrow. My daughter is going to the Dentist. More practice for me. I have to check the weather. Friday I am finally going to meet my new PCP from my new hospital. Hopefully my blood pressure is better so I can stop taking these pills. They have to keep it monitored now. My hair needs washing but I can wait. It still looks okay with the braid out. Just trying a new product out and waiting to see if I am getting it dyed or not.

These crutches work great for balance. With a Zanaflex, you could train yourself how to use them. It’s not that hard because they are like having two canes and way better than a wheelchair. The blue ones I couldn’t find so these are rather plain. They suggested decorative tape which I did find online. You just wrap it around neatly. I can’t get another cane until it warms up. I am more comfortable using these which I don’t see many people with. If you need some fore arm crutches, go to Drive website. That’s who makes them and I recommend these. 👍🤗