what say others?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

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Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

what say others?

Post by Di Di »

Hi..........I`m feeling a bit sorry for myself!!.maybe the cold wintery weather has something to do with it ....I should not feel like this, have a nice warm studio with waist high benches to lean on...and high stools to perch ...heat pump and good sound system. bliss !!
I am finding it harder when I`m out ,last night comming out of a meeting ,just carring a light swing bag I was unable to talk myself into walking down 6 wide comfortable steps [no handrail]..to my parked car at the bottom ........
Stood there and said come on girl ,pull yourself together , you have walked these steps many times before ...`get a gripe`....there was no way my brain would let me and I had to trudge in the rain the long way .....I believe even if I had had my stick with me,I couldnt do it !!

I take no medication as yet , I read what you all say ...you talk of side effects ,but dont acually say what they are !!
Question ...I feel so much more in control with just one glass of wine ...is there a pill out there that is equivalent that I could take before an outing ,if I could see there might be some problems.?

guess there`s no magic fix and I have to just get on with it !

anyway its nice to know I have somewhere to have a rant ...thanks for being there ... DiDi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

Hello DiDi:
Don’t feel bad you are suffering from a common situational reaction that all OT people respond to and I’m glad you mentioned it again so our new members will know when they find themselves in the same situation. Unfortunately being confronted with going DOWN stairs without handrails we all have the OT panic alarm from within telling us we do not have the physical ability to go down the stairs. Some, including myself have had to sit down on the steps and go down that way step by step. Glad something told you to use a safer way.
Gloria
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: what say others?

Post by MaureenB »

Hi Di DI

WE all understand how you feel,we have all felt sorry for yourselves at times. stairs even with a stick are a no no, when you reach a certain stage. I even find approaching a hand rail when there is one ,I have to sneak up .and grap it.first ..... haaaaaaaaaaaaa.

I think a drink of alcohol, makes us feel relexed after a stressfull day ((which is every day)...(.oh boy would we love a day off).)...but unlike some other tremors Alcohol it does not stop O.T

I am giving Rivotrilo. Clonazepam, another try...I gave it up because i was falling asleep,in the middle of the afternoon, and I was having very bad dreams.at night.and I found no difference.in the tremors.after 9months.
This time around .I am on 1mg, and have found it better to take it in the morning, and started on .5mg.I have not found it a hugh help, however It takes the edge off the tremor, but unfortunatly i have found I feel more unsteady when walking.....its a sort of swop...i am still having dreams but they are not too unpleasant.I have overcome the tiredness during the day,however I am not a night owl any more...I going to give it a good try
.My Neurologist explained that the medication slows every thing down

a few months ago I felt very down, but as you say, I think weather helps or hinders.Its our summer in England so i am able to wood carve out in the garden....sitting of course
Trust you are feeling a little better
Regards Maureen.
P S Its raining.today . oh boy :lol:
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Good morning ladies,

I thought I would add my voice to what has been written here. As Gloria mentioned, we all have our good and bad days; allow a little "pity party", then get on with whatever we were doing ~ or trying to do.

Trying to go down stairs ~ or even one step ~ is a challenge; especially with no hand rail. It is almost impossible for me, but I think all of us are VERY careful.

It is summer in Florida, very hot and we are having our afternoon rains; but most welcomed.

I do hope today is a better day for everyone.

Betty
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: what say others?

Post by owen-lynettepickles »

Hi Di

Sorry to read that you've had one of "those" days .... I'll be home soon (28th) and you can give me a ring if you want a chat. Re the stairs with no handrail - sometimes it just creeps up on you when you are least expecting it and your feet (or brain) just don't want to make that move. On this trip we're having in the USA I've been making sure Owen goes ahead of me - specially all the escalators to the pedestrian bridges I'm encountering here in Las Vegas at the moment!!! One thing I definitely don't like is those moving walkways .... have been forced to use some in Las Vegas so grab Owen's arm and hang onto the rail for dear life. I've avoided all the airport ones and instead stride out walking alongside - good workout and not many people around to get in my way as most are on the moving walkway!!! They probably think I'm mad not taking the easy way but I don't care ... lol. Owen always walks with me and I find it a good way to get my legs working again after being cramped on the plane - trying to avoid the wheelchair assistance just yet, although I did need to use one coming off the plane in San Francisco after our 12 hour flight ... my legs just did not want to work!!

Re the glass of wine - Owen is always telling me that it would help, but as I don't like wine, I can't give you an answer on that one.

Hope your days are better now.
Your Kiwi OT mate, Lynette
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi............THANKYOU all for the replies ....I feel better already:).............Gloria, I did consider sitting and going a step at a time on my bottom ,but didnt fancy a wet drive and a explantion when I got home : :roll: ....like you say, good to listen to our 6th sence and take heed ,and not beat up about taking the safer route .
The SUN came out today and I carried heavy sculptures across the uneven lawn ,down some steps,[side of house to lean on for a breather if needbe ] to load in the kiln,because the works are my passion I managed OK!..............if its a basket of washing and I`m hopless :?
Lynnette, good to hear about your travel trials and how you cope........I think my `downer` is part worring about the UK trip my husband and I are planning in August ,trying to book train trips at the moment and all I can think about is the crowded platforms and the steep steps , bit pathetic really :)..............
weekend ahead ......everyone have a good one .............and thank you ...DiDi NZ :roll:
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hello Di Di,

So good to hear you are feeling better; it seems bad days are followed by better days.

How in the world do you carry heavy sculptures across an uneven lawn, down steps and load your kiln? I think you must be doing something right!

Regarding your trip to the UK; why not give in and use a wheelchair going through airports, and train stations. It took me a long time to get to the point I felt comfortable doing this, but now, when we travel ~ which isn't often ~ I DO ask for a wheelchair and enjoy the ride; you should too. It does make travel so much less stressful.

Good luck....

Betty
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: what say others?

Post by golfnut »

Dear DiDi,
many thoughts come to mind reading your posts - especially how different OT affects us. My problem today is not going down stairs - it is getting UP! I feel steep hills and stairs share one thing: you walk a bit slower (as it's taking a toll) and my legs hurt so much when I finally get up at the top (probably from lactic acid). So I've asked about it and got the advice to think about using the "second foot" to PUSH myself up to the next step, instead of dragging myself up with the first leg that I put on the next step up... (Does this make any sense at all????) Anyway, now I push with the second foot - and manage steps upward much better than before.
Down - a rail for balance is needed, especially if the stairs are crowded, but the legs manage stairs going down much better - perhaps the "load" is less on the muscles and that's why?

Re wine - I must admit I've made a serious try to drink the OT away.... It didn't work. What happened the next morning was instead quite "funny" though, as being a bit shaky from a hang-over, and VERY shaky from the OT as I'd drunk the med's effect away - I had some interesting situations... Well, it had to be tried.
I do agree that a glass or two relaxes me which in turn makes the situation easier to handle mentally in some ways, but the shakes are still there.
Re meds I did have side effects from Clonazepam and this relates to wine - just one glass and migrain hit immediately! And Ergenyl gave me shakes in the hands as well as the dose went up. Sleepiness has not been a problem after the first "getting used to it" period.
Now I'm on Gabapenting 3*300 mg per day. I think it works nicely. I had problems initially yes, but now I feel "quite normal". (or as normal as I can be my friends would say...)

As for travels I now ask for wheel-chair assistance at airports as I cannot even consider the passport lines.. Trains have not been a problem for me so far. I commute daily and simply avoid rush hours so that I find a seat. Most train/tube stations here in Sweden (and some in London I know) have lifts so that you do not have to use stairs. If you plan to visit London, the tube map show which stations have lifts.. There is a EU rule now in place regarding accessability - so there has been quite some changes regarding lifts. Hope this helps the worry...

Take care (and why visit UK - come to Sweden instead! :) lot's of lifts!! )
greetinsg from the golfnut
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hi Golfnut:

Glad to see you are posting again; you have been missed.

I think you had some good advice for DiDi on many subjects she questioned. Regarding going up or down stairs; I find it is much easier to go up stairs than down, and a rail is a must! My legs just don't seem to want to hold me up when going down.

DiDi, I feel you will find what works best for you; each of us is different and must find our own comfort zone and what works for us.

I think when we can accept the fact we do need assistance getting through airports, etc, then it makes our lives so much easier. Do think about using a wheelchair on your trip to London, sit, smile and enjoy the ride.

DiDi, stay in touch and as I said....welcome back golfunt.

Betty
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

thank you all for your wisdom and encouragement ..............this afternoon I went to our travel agent and started the ball rolling re booking UK train trips and Ferry to the Isle of Man , decided it was better to let the exsperts do it & while I was at it I asked for wheelchair assistance at the airports ,as so many of you have suggested that is the way to go, taking all the stress out of pass port lines etc ! :) [guess I can always decline it on the day wobbles pending]

Golfnut talks about following her own thread ,think it a sound idea as you can check your own progression / progress ....`what say others`....may well develop into my thread!

with appreciation ....DiDi NZ
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hello DiDi,

I was so pleased to read you asked for a wheelchair to get through the airport and pass port lines. It will make things so much easier for you; you will be surprised and happy you made this decision. I think once you have tried a wheelchair, you won't want to travel with out that assistance.

Yes...Golfnut has a great thread keeping track of her progression; I wish I had done that. It is helpful to her and to us.

Good luck and stay well.

Betty
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Thanks Betty...I admit I do feel better about the travel ahead ,now I have organized the option of a wheel chair ....just need to tell my husband of my plan ?...............As this OT is new , and he has been maverlous about it ,we still havnt REALLY sat down and discussed how it truly is ......He is very aware of my leaning and need to sit ,my high chair in the kitchen ....We dont often go out together to crowded affairs these days ,but when we do he has always agreed with my excape plan,but it has never been put to a real test `thank goodness`

We will talk ...at some stage ,flowing into it , up to now OT talk has reversed into how he is and his needs ,totally un intentional ,just how it has always been , no big deal ! .....may be at
the airport it will just happen?

Golfnut talks brillantly in her thread about `Shades of Grey` .....Last night as we sat watching television,I almost felt I was some one else living this life ...this whole year so far ,has been so differant because of OT , but for all that it is sort of OK...its not the end of the world, I can now do things my way, say `no` with no guilt and a reason to back it up if needbe.......sort of liberating .
still somedays there are flashes of ....I will come right and be the old me!!
I am working towards a art show .....yesterday I prepared canvases to sketch on ....today is the test to see how I manage ,which is why I am stalling and writing this .........best get on with it !!
thanks for being there ...........best wishes to all .......Di Di
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hello Di Di,

I think when you sit down with your husband and explain to him just what you are feeling and how difficult it is to do certain things, he will begin to better understand OT. It is difficult to explain, so perhaps you might suggest he read some of the things written on this site. It might be helpful as well.

Yes, Golfnut does a wonderful job of explaining her feelings and what is going on with her. I think she helps a lot of others on this site who don't put into words what they are feeling. We need to get our feelings out and let others know because I feel many have the same feelings, yet don't discuss them. She has opened a whole new world for many.

I understand what you are saying about thinking....you just might be "the old me". I often think I can still do all the things I have always done, yet I know, I am no longer able to do many things I did just a year ago; not to mention before OT.

However, when I sleep and dream....I am just as I was before OT ~ wonderful dreams, and the free feelings, one forgets, over a period of time, how it used to be. I enjoy those "dream times".

Good luck with your art show, I'm sure all will go just fine. Keep us informed; we are all interested.

Betty
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi...thanks Betty ,I know what you are saying about ~dream time~...I fly in mine on a good night :)
you have sparked ideas for my sketches ,and for that I thank you .

I have been stalling to write , feel conscious of having DiDi plastered all over the place ? hoping someone will talk about creep and the other subjects that are posted up? thus removing my name!!

the sketching has just gone fine , after a jittery start,and the whole preparation for the NZ Art Show is going really well !......things have a way of working out ,I have been asked if I would mind being at the entrance , with my work for sale displayed around me, and physically work on some clay ...`Wow would I`
this takes all the stress of being in a crowded gallery space for 3 days which I was dreading ...
I will be out of the line of fire perched on a high stool , and able to talk to people as they pass ..
and when I feel confident I can venture off the perch ,other wise I have a job to do on it [if you get my drift]

The wheelchair problem has also solved itself ...Husband John picked up the tickets from the travel agents ,and she talked chairs ....John thinks it a very sensible idea ,coming from her .`brilliant`

Golfnut talks about being really great round home ,totally how it is aye?...you can drift a whole day with OT playing no real major part in it ...But have something different to do or contend with and up comes that leg feeling and wobble head ....but like the mushroom harvesting , there are other ways to skin a cat ...guess over time we all get pretty good at adapting and `doing` in our unique ways... ` chance favors the prepared mind `

bought a collapsible walking pole with a spring for the trip...will look for a stick /cane that will pull out into high stool perch that you all talk about ,when I get to the UK...

thanks for being out there :) DiDi NZ
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: what say others?

Post by golfnut »

Somehow shopping helps in many situations - no??
:)

I have a beautiful, collapsible/foldable, walking cane; it's green enamel-looking with flowers!! (stark crazy say some..) It doesn't help the OT at all - but it is very useful as it sends a signal to others that here comes someone with some kind of problem.. Recently I've used it less, but as its foldable, I can have it in my purse/bag and just unfold if need be. It's from the classic canes in UK - unfortunately "my" cane is not shown on their site..
(http://www.classiccanes.co.uk/catalogue ... ticks.html)

The second thing I bought when OT hit me, but have not used much so far either, is a three legged stool - lightweight and higher version so that I'm not sitting knee-high to others. (www.walkstool.com) It's good to have and I can bring it to functions if I want.

Having these things makes me feel comfortable even if I do not use them. I have them, know they work, and can choose to use or not.

(and let us know how the show goes!! )

the nut
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