what say others?

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Moderator: gloria

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

Hi! DiDi our super talented OT friend : I'm very happy you have "your life with the art of sculpture" as a great part of you as a person. I personally try to preserve my independence as much as possible too however OT is our constant challenge but I have found mentally I must expect the limitations that OT presents but find a different path to get accomplished what I want to do! I don't always win the battle but it is worth the try. After reading your growing time with OT I think you are making good directions as our OT keeps demanding with time. Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

You know Gloria ...sometimes it takes a long time for the penny to drop !!#!...:)
I have always been aware of my panting when walking ,thus taking away that pleasure of talking while walking with a friend ....and even if there is no talking , the friend showing concern about our heavy breathing when we stop !!

ITS THE HEART RACING ,BECAUSE OF THE GREAT EFFORT IT TAKES TO MAINTAIN OUR BALANCE ...end of story ,full stop..

My hearts had all the checks ...alls well there `touch wood` long may that last ....I realize I wade in the pool and talk for an age with-out the pant as there is no effort to maintain my balance ...which is why water excersises is so perfect for OT cope-er`s ....
well meaning friends are always pointing out their concern about my panting eg...answering phone , they say sorry I made you run to answer ,when I have just walked across a room .........so need to say it`s all part of OT .....and accept it as just that ,myself.....Didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

DiDi: When you say panting could it be that the panting is trying to catch a breath because we are actually holding our breath without being aware of doing so for we are unconsciously aware of what will happen when we stop walking and are fearful of the feeling of the need where to sit. I have discussed this with my Yoga instructor because we are constantly being told to do deep breathing and I tell her of my catching myself of holding my breath though there is no need to do so. I guess it is all part of the built in OT emotional system. I've lived with OT so long that there are more issues that I will have to come to term with in the future. Glad you are finding Gabapentin helpful, I have been using it since 2000 in much larger doses now but because it is a flush thru drug, I have no fear of increasing the amount as needed.......... All the best ,Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

Hello DiDi:
Thought I would check in to see how you are doing? You are a very busy gal and that is good!!!!! The OT COUCH-POTATOES have a much more difficult time because they dwell too much on the negative side of OT. Nonetheless, I feel sorry for them because OT is a big challenge in our lives but fighting back is the only way to enjoy the good sides of life and be thankful for that. How are you doing with the gabapentin????? I have been on it since 2000 and as time went bye I'm now on a very high dose because I'm a very advanced case of OT and aging is not fun.
Getting back to the sculptress you are..... how do you enter in and arrive at new subjects for sculpturing? Do you do any other media of art ? Cheers from New Jersey, USA, Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hello Gloria and others ....Its been a while since I have visited .All good ,you ask how I`m getting on with `Gabapentin `really well` still only on 300 mg 3 times a day ..long may that last ,not sure I would be safe driving or have my wits about me with more !!#!...
Realize us OT`s get very good [sometimes subconsciously] at coping through the day..... still noting with regret things I can`t do ...but very soon see someone worse off ,which pulls me up ,shuts up me up .. :)

You ask about art /sculpture ideas ........working on `Venus of the 3rd Age` ...keeper of life`s experiences....
little hand holding size pieces,some clay ,some bronze .............after the hundreds of little figures being dug up century`s old arround the world ....in my case ,older women celebrating life ............could well be something to do with OT, but has been in my head since visting museums arround the world in the 60`s ....show going to happen in Feburary at the NZ Academy ...off to my annual Bronze casting camp in a few weeks ...so lucky, as the others understand and watch out for me and make allowances ...still feel I pull my weight and part of the team in other ways .

Peter Dunlap-Shohl ...has just published ...a book of cartoons ....`My Degeneration` and journey thru Parkinsons
using his journalism and drawing talent to cope and understand `his` Parkinsons ...very interesting

All I know Gloria if I didnt have my clay ,I would not be well ...and encourage everyone to find what make`s them happy and creative ....and find a way to `Do It ` even if its a recordings of `mind drifts ` stories of the past ....for others to hear , if you are not mobile,but need to forget for a while that constant ringing in your ears ...

another ramble ........sorry ....take care ...Didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

DiDi: I always enjoy your rambles because they are positive not negative. You have used your talent to ward off the down pulling that OT can do if we do not take the path of working around OT. Also early on you educated your group of people that you had OT and what it meant living with it and they seem to be there in turn to help if necessary. Keep your postings coming, we learn from each other........GOOD JOB! DiDi, Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Dear Gloria and others ...
It has been 3 months since I have visited the forum ... shows me ,how I`m getting my head around OT and just getting on with the commitments I had made for the first months of 2016 ......Gloria do take that as a compliment not neglect,early years of OT ,I logged on at least weekly scanning the forum for answers and help which was always given.

My Bronze casting camp went really well , pacing myself and letting others do jobs I accept I cant manage anymore,we celebrated 25 years , I got to cut the cake as the only foundation member still standing [OT aside :) ]
The planned exhibition "Venus of the third age" has just finished at the Academy ...had little bronze Women on Surf & skate boards ...even one on a magic carpet ...under `in my dreams` .... a very pleasing result all round .

the Gabapentin is still doing its magic ....not saying it has controlled the tremors ,more it has taken away my tremor concern...making my day`s easier ...I feel no need to increase the dose of which I`m thankful.

am learning to save my energy for the important things when out ......when home just perch and lean and pace myself and the day`s go well ......people really do understand and help if you tell them how it is ...no embrassment if you are up front and they dont have to second guess or worse still pretend all is normal...this ramble is all for my sake and record of my thread ...what say others .....thank you ...Didi NZ
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 everyone ...like Golfnut its been a few months since I have visited and posted ....did try once ...somehow lost what I wrote and just ran out of steam to re-write ....:)
That is something I`m learning to accept and not try and push like pre OT days ...Working well [touch wood] ...pace myself , achieve what I really want to do ...and leave the rest for others ...in stead of being the super involved in all things ....very liberating !!...
This may well be an age thing as well as OT survival .

Had another great 4 day NZ ArtShow ...used my trusted walker while I manned my display ...the underseat makes a great portable office ...the seat to transport works to replace sold piece`s ....seems higher than a normal seat ...so quite comfortable talking to others while seated .

Since have driven north and taken a 2 day clay work shop ...Before I start I explain my OT ...the group seem to understand make allowances and all goes well .

Visited family as well ...and all have noticed a vast improvment as I`m taking gabapentin ...I know things are slowly progressing or is it degressing ? :) but I have a better undestanding of what I can and cant do ....and accept that and dont push it ............saying No and not feeling guilty ...it is just how it is !!

my day goes in installments ...when tremors kick in I sit, recover, then do something else ...tricking my brain by changing the subject ...homefront looks a shambles , but by the end of the day , have tied up all the ends ..everything I wanted to do is done...`works well`...but confusing to on lookers ...

I still have to say for ever thankful I have my studio and art ...it keeps me whole ........take care all ....Didi NZ
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: what say others?

Post by gardenlily »

Hi, Gloria,
I noticed that you said you had taken Clonazapam but were now using Gabapentin(am I correct?). Was there a marked difference in how the tremors reacted or was it just how you felt? I see my neurologist again next week, and was wondering if I should try something different. We did decide that the 2.0 mg a day of Clonazapam was making me very depressed, so I am now back down to 1.0 mg a day.
I really appreciate being able to "talk" to people who are afflicted with the same thing as I(sort of gives one comfort!).
Thanks again for all your help and information.
Gardenlily
Kingston, ON
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 Gardenlily ....I do hope Gloria see`s your post ,if so I`m sure she will answer your`e question about clonazapam ...I have only taken Gabapentin so cant really help you .........take care ...Didi NZ
gloria
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Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

gardenlily: I'm sorry I did not answer your posting this morning I went out directly to the flower garden because it was still cool and working in heat I cannot do, it is that " OT thing" !! I was on Clonazapam only for a short time because it claused dizziness. Yes, you are correct I'm still on Gabapentin and in the beginning yes I did feel a difference in that it did ease my standing time before the need to sit down became demanding. However that was 16 years ago. I'm still on Gabapentin but I have found our standing time lessens as the progressive part of our OT disorder. My standing time is now 15 seconds however Gabapentin softens the stress and tiring of the OT episode and if I forget to take my dose I feel a difference. My neurologist just added Neurontin to help relieve the tiredness of the everyday. To date there is no drug on the market that is directly helpful to all our OT symptoms...it is a question of finding one that helps you best as an individual . Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hello All ...Gloria sent a message of greetings etc ...But with this new out lay on the forum I`m not sure why there is a whole lot of old posts comming up!!#!.... :)

All`s well but busy with me ...in middle of a 10 day exhibition up the line a bit ...managing OK...ask for help when needed , also people seem to work it out and be a step ahead , which is really good for my well being and make`s my day ...

when it gets crowded I just sit tight on my trusted high stool and wait for a clear get away , or room to thin out then can relax ..
loving the walker when shopping or seeing the sights ...long may this good coping time last .....Best Wishes to you all ...Didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

DiDi: I did send you a post yesterday but after I read it I was not happy with what I wrote and deleted it with the thought that I could write a better note later, ..... it did not get lost in the system which is new but not that much different. So my busy friend I'm so happy for you because of the work you do, it certainly is something that with OT you can remain quite productive in so be thankful of the great talent you have within. What I wrote in the deleted message was in reference to your June 26 post about going to a 2 day clay work shop ? That brought memories of when I was a little girl living on a farm that had 2 brooks running thru the property and in these brooks was grey clay that I would make dishes from for my dolls and other figures by baking them in the Sun.....I was just a kid playing in the brook not a talented person like you making pieces of art from clay. ( I'm certain it not the same kind of clay that you work with ).
Yes, a walker is a great help for stop and go situations...... I use a walker when I go shopping with a woman helper because I cannot lift it out of the trunk of my car by myself. The weather is getting colder and with OT I like it cool, heat is exhausting . How is the weather now " down under" ? Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Dear gloria ....understand how it happened ....all good ............once I am home and all the years art commitments are over , I will go on OT site and get my head round the new lay-out / format....
I think I gleamed a thread about alcohol ?...which I must sit down and visit...
2 glasses of wine and I walk better ... it relaxes me ...I just know I cope better and personally forget the handicap of OT through that time.....
Still say Swimming , water wading and water stretching are the way forward for OT ....takes all the stress of trying to walk on paths , coping with dogs and daddlers ,not to mention people who want to stop and talk ....:)...no worries in the pool ,talk away while treading water , water keeping you upright and supporting ...brilliant !!
take care all .............didi NZ
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hello all ..............Its been a new year and a few months since I have been on the forum ....I over committed , work wise last year ...big lesson learnt , as I hit a bit of a wall once I stopped !!....so this year toned it down a bit .

Was waiting to share this once it had come thru ...a young couple [just up the road as it happens] is designing a higher than normal seat on a walker frame for me ...so you can perch and be higher and more at eye level to comunicate ...as soon as you let the handles go the brakes go on ...all exciting stuff , so watch this space ................x

Last week was able to have an lunch and catch-up with Lynette Pickle one of the few OT NZers ...she lives on the other island , so grab the chance whenever we are able ...alway so good to chew the fat with some-one that really gets it ...we share flat-out bouncing from one thing to the other ...cant work out how to add a photo , we had a lovely time ...

My maintainace for OT is still the same ...think we all work out whats best for our selfs and stick with it ..one thing new , if I`m in a real tremor I sing loudly...someone told me you cant think of something else while you sing ...so your brain dosent think tremors and sort of helps !!#!...weird I know ...but give it a go and tell me what you think ...best wishes all ...Gloria think of you often and send you love ...........Di xx
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