I saw the neuro this week. PT and walking FTW!

[WinterSown]

It's been six months since I have seen her. My toe to heel balance is not as good as it was but overall I am stronger. She said summertime is the toughest season for many of her dysautonomia patients, especially on humid days; I can agree with that. SImilarly, perhaps, this is why showers are so hard to get through without symptoms coming on--it's certainly hot and humid in there. I have to walk the dogs early or late in the day and I stay inside by a fan, and I always have something cold nearby to drink. I eat a lot of melon, it's in season and loaded with electrolytes. Yum!

She wrote another PT script and said she would keep writing them forever; I don't have to come in, I can just call and they'll fax (awesome!) My exercise set plus daily walking is improving my circulation and my ability to right myself when I lose balance or have a Drop Attack which is fainting without losing consciousness--you get to be awake for the reset. Ugh. One extra benefit of my balance exercises is that my calves are starting to be quite shapely--baby got gams! I'll be 62 this summer and mostly wear dresses so hurrah to that! I brought a tray of warm oatmeal raisin bars into the PT center this afternoon. The staff and my doctor are always appreciative--at 30yo he has the appetite of a horse and so do his assistants. They didn't last long. Bringing in a tray of something every now and then is an expression of how I care for them. Two years ago I had hematomas, bruises and scratches from tripping and falling as often as I did then and now I don't; it's been a while since I tripped or collapsed to the floor--staying in PT will further reduce the occurrence. They deserve much more than cookies but I did make good ones.  

[Pistol]

Hello @WinterSown - glad to hear you are getting better!!! This comment made me laugh: 

8 hours ago, WinterSown said:

have a Drop Attack which is fainting without losing consciousness--you get to be awake for the reset. Ugh.

I always refer to my syncopal episodes as my reset b/c afterwards I am better ( maybe not for long but immediately after ). Rarely have I stayed conscious during them but when I do - boy, I hate it! Last week I had a drop attack and was really confused during and after - I take the syncope over that!!!

Awesome that they fax you your exercises! My PT is 45 minutes away and I cannot do that three times a week so my PT also gave me print out to do and I just came in once a month. I graduated with high honors in December! I think more POTS patients should be able to take advantage of PT, it helps in so many ways and the exercises are completely to each persons abilities and tolerance!!!

I hope your balance will continue to improve. (I am wondering though - do they write your scripts indefinitely b/c of the cookies??? 😉) I know how good of a cook you are!!!!!

[WinterSown]

My PT is a few minutes drive, all my specialists are--I can get to any of them in fifteen minutes and three are in the same building so whoot! Every one of them has always extolled the virtue of exercise as a means of control for dysautonomia. It is not necessary to do any named protocol, what's necessary is moving your bod to improve your circulation. I have a lot of clarity during and after sessions, I also have a lot tired so I usually take a nap when I get home. When I first started I could barely do three reps of anything without getting winded and having to take a break. It wasn't just the dysautonomia I was also pathetically out of shape--I was very tubby and flabby. But, even in the beginning, I would feel a little better and a little better is better than nothing getting better. I kept at it. I'm starting to have Suzanne Somer thighs so whoot to that--never could have imagined that happening. Dysautonomia is giving me a better bod. Twisted logic, but yeah. 

My cardiologist is hilarious when he imitates the reset. He puts his hands up waving around his head and kinda growls like a doopy godzilla, it's so funny but it's so accurate. I really would sometimes rather I not be awake through it. For those who have never experienced a drop attack, I hope you never do, the sensations are akin to a hybrid of two movie scenes. If you could cross Going to Plaid from Spaceballs with any scene from Earthquake you will have a good idea oh what it is. PS...please bring a vivid imagination to that. LOL.  With everything, it helps to have a sense of humor. 

[WinterSown]

4 hours ago, Pistol said:

Quote

I hope your balance will continue to improve. (I am wondering though - do they write your scripts indefinitely b/c of the cookies??? 😉) I know how good of a cook you are!!!!!

I make ice cream too.
Muahahahaaa

 

 

 

[MomtoGiuliana]

So glad to see this and that you are feeling a little better.

[bombsh3ll]

I'm sure you'd rather be well, but I have to say from your photo you really don't look 62!

I don't look my age either, but that is because I am indoors all the time!

I am glad the exercise is working for you. What did you find the best exercise for non-upright folks? I have a recumbent bike but always interested in other ideas.

B xxx

[WinterSown]

On 6/25/2019 at 3:01 PM, bombsh3ll said:

I'm sure you'd rather be well, but I have to say from your photo you really don't look 62!

I don't look my age either, but that is because I am indoors all the time!

I am glad the exercise is working for you. What did you find the best exercise for non-upright folks? I have a recumbent bike but always interested in other ideas.

B xxx

Thank you! That was two or three years ago, I lost a big chunk of weight when my symptoms came on and I am getting good at posing while sucking in my cheeks. Lipstick helps. I've been putting on moisturizer right after every shower since eternity started.  I credit my cardiologist for improving my complexion. One of the first things he did was take me off supplements and tell me to get it all from the food I eat and drink. I'm not perfect, I put down a jar of popcorn jellybellies this week. I was better and ate lowfat real popcorn for a snack today. Today I've had citrus juice, melon, tomatoes, matzo ball soup from the diner, and I made turkey burgers (put eight in the freezer) tomato salad  and salted tater-tots for dinner--I'll have a bowl of cereal and milk later. It's actually quite easy to get in enough electrolytes. I still struggle with getting enough fluid but I've got electrolytes in my kitchen. I shop for them and so they are here to eat. I just snacked on a fat-free yogurt with bananas and strawberries on the bottom. Ahhh, the yummy taste of electrolytes. Glorp.

I have some balance and gate problems, I have vertigo, and I get Drop Attacks at the drop of a hat.  I do exercises on my bed with my stretchy strap. It's a jelly resistance thing which stretches and the more you stretch it the more resistance.  I do a few with it around my legs--my knees and then my ankles and just spread my legs--I'm on my back and my feet are up in the air (draining!). When I started just three reps would make me want to cry. I was a seriously badly out of shape person trying to fix a lifetime of good food and not enough exercise to burn it off.  But I kept at it because I needed it, it hurt in the beginning but the reality is that it keeps me innervated and strong enough to hold on and stay on my feet. I also use balance boards but I am between a table and a counter so I can grab hold if I slip. I haven't slipped in over a year but I'm in the same spot still--just in case. This is an older video and geared towards people suffering from cancer, but is excellent for anyone who is laid up or in poor shape and needs to start slowly. I am planning on walking the dogs later if the weather holds. 

 

 

[bombsh3ll]

Thanks for sharing that, I will def check out the video! I was in great shape when POTS hit, but I know I could eat better. Ironically my diet was pretty good before I became ill as I used to love healthy cooking,  but that is all gone now & I also don't have much appetite. I do love my nutribullet though!

B xxx