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

jesschar
Posts: 3
Joined: Thu Feb 19, 2015 5:43 am
Location: new york state

Re: what say others?

Post by jesschar »

Hi, I must say that this long winter is dragging me down also. i have always been a marveler at the wonders of nature but she sure is mad at the north east US this year. I just went to my first neuro doc for my tremors and got the answer I was expecting in a way. I was armed with knowledge and knew that I have already been reviewed by a panel of movement specialists and they have agreed that a certain neuro doc will see me from their practice in May. So i went to the local neuro to see if their were any tests he wanted to run before my visit in May, orders from my primary. He looked at me sit, stand walk and lay down and told me it was in my head go to mental health immediately. Now, I have been to mental health at times in mt life when i felt it was needed. In my teens and during my divorce 5 years ago. I am familiar with this area of medicine and have studied it extensively in college and in my line of work. So, i said I can see how you would think that but could you please just listen to my legs and tell me I do not have OT. Or hook me up to that machine right there and listen. He refused! Said there is no need. I said well what about MS he said you do not have MS you need to go to mental health. He agreed I can not stop the tremors but that I have some deep stress that has created tremors. He could only see tremors if i stood still too long. So yes i am feeling a little defeated in my quest for answers. So far have seen seven doctors and only my primary has ever physically did an exam. This neuro did not even do any basic tests like touch your nose, close your eyes, hop on one foot. My primary does this every time to document any changes. Thank You Dr. Persuad for believing in me.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

Jess: Yes I live in Northeast NJ and although this Winter has been miserable here I know your area is much worse, I find ice under my OT legs very stressful. I'm sorry too you did not have a satisfying"neuro" visit. Perhaps at the next doctor's appointment you will be given a EMG that might determine your problem. Keep us posted, 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 Jesschar...You say the marvels of nature , guess we could put our OT and tremors down to that !!#!.........
That Doctor needs to attend one of the `gatherings ` and get inlightened, cant believe he would not oblige you and do the EMG testing ,if he had any compassion at all about `your` mental state ,either way on the result one of you would be happier ..................May I suggest you go onto the forum...to OT "things" that help.....find using a smart phone ...there ,there is talk about an i Seimometer .....that is available to measure tremors and help with diagnose ?....then revisit that DR and show him ,...would take courage , but would certainly help OT !.......I would be tempted to shove the i Seismometer up the other 1/2 of the Dr`s diag`nose`...but thats a NZ thing...sorry :( :) .......best wishes ...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 »

Gosh ...just reread my last post ...sound a bit heated and grumpy ...but still agree with what I said !!

Joanne a new member from further up the island has spent this Saturday with a group of training Dr`s...its her story to tell, but am so thrilled the word is getting out here in New Zealand ....will encourage her to tell all..:)

earlier in `what say others` there is talk about not being a victim ...Well I have changed my stance on that ...I am a victim , I now, do live my days with OT,planning things to make it all go easier ...both for me and others..and thats fine in my book ...
I achieve the really important things , and am learning to say sorry , no thanks , to things that just arnt worth the effort or warrant the time and energy that would go into it , zapping me for things I really want to do....
selfish to the out side world , but there it is ................
Am building up to having a 2 man Exhibition at the NZ Academy mid April ...I called into the gallery this afternoon to line up a few things ...I lent on pillars, walls etc ,and was generally a bit pathetic OT wise ...didnt [couldnt] stay too long , but was pleased to have made contact and talked through my needs for the April show .

Took me a few hours once home to recover ,but an example of alloting energy to whats important to me .

My Home and shed is my haven ...little if any stress there ...................take care 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 : It is so good to read the way you explore the intrusion of OT in your life...... working around it when necessary or challenging yourself a bit more to find a way to cope. You are a highly tatented artist, a gift OT can not take away from you !!!!!!!! Thanks always for sharing, 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 »

Well ...the opening has happened ....went well , I was perched like Queen bee at the top of some steps , looking down on the exhibition ..now I have 10 days ahead in the gallery working with clay ,perched on my high stool , talking to anyone that visits the gallery ,which I`m really looking forward to..........the hard part is over :)
all these passed weeks have gone OK, as I have considered the needs of OT with every step ...........People say ,you look so well , you manage so well ....[thats because I dont `do` what OT cant handle]
Again family stress seems to be the biggy , but the younger generation are beginning to realise that ,and both I and husband are taking a back seat there ...and thats fine with me ...`let go and let be `
take care all .............winter is just about to kick in here ...hope everyone over there has a wonderful summer after such heavy snows to deal with ....give`s me the wobbles just thinking about it !!#! and I use to `love` my ski-ing ...how live changes .................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 ...I read all the `new to the forum`...think it great the way Gloria answers , it would be super if older members would answer too , giving new OT`s a good welcome to our world ........I know the best thing to do is to visit and read all the threads ...I know I relate to 90% of them .

My sculpture show is over ...was asked to stay on another week , so manned it 20 days on the trot 10am to 4pm ...my trusty stick , and high stools placed around the gallery ...was able to enlighten people about OT if they commented on my balance issues ...but admit mostly their eye`s glazed over so ended up saying , have a brain thing ? under the unbrella of Parkinson`s and left it at that ....unless they asked more questions,mostly there wasnt

managed to swim most mornings through the weeks before the gallery and believe that made me cope better .

Since home full time ... noticed negelcted house chores , was kneeling on my padded gardening stool ,wiping the floor when it accured to me I had tremors in upper legs and lower arms ...once I stood [with much effort ] the tremor was only in lower legs as usual .....weird !!#!....so now find it easier to do things sitting on bottom ...

My next outing is the NZ Art Show an annual 3 day affair , where I again man my own allotted space and display ..last year went really well ...I do so hope I get a good site with easy access again this year ?...there is no pre booking allowed , so cant worry about it ...easier said than done .. :) must practise what I preach ...and go with the flow .....harder than it sounds ....take care 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 »

Hi! DiDi: Sorry I was late in answering your lastest posting but I have been blessed with a first great grandchild. A beautiful baby girl named Madeline Nyx. " Madeline" was the name chosen from the well known childrens book of a good number of years ago...... So you see my attention has been on this very special event...

Nonetheless I must say DiDi you are continuing your talent of sculpturing and sharing how you manage to cope with this wonderful part of your life inspite of the limitations of OT. You are contributing a great example of fighting back at this ban in our lives. I often wonder how you manage to lift your sculptures......do you need help in setting up the displays of your work?

I personally have not been able to do any kneeling no matter what the job might be for years because I have osteoarthritis in both knee so like you I do all such gardening or other jobs sitting on "bottom too."

All the best, 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 »

Congratulations Gloria ...a little great grand Daughter `How Wonderful`...wallow and enjoy ,makes dealing with OT and life all worthwhile ....`these little Cameo`s `
I line up help when I need it ,those who know me well take it in their stride ...I usually try and make it a fun and social thing ...though very important and exacting for me .....I learnt to ask for help after a mishap that could have easiely been avoided ....the clays are very heavy...I have always valued my independance

On that note I have just asked my nursing friend of 50 odd years if she`s OK with my ordering a airport wheel chair for our trip to Sydney late June ........the prospect of crowded slow queues etc ,so that is a big step for me and our relationship ,but to all you OT`s a no brainer ..
Am now considering hiring a walker for the week I`m there ..interesting, running MY art exhibitions are easy compared to travel and all the obstacles it throws up ..

Admit life is so blissful in my shed with my music and clay .....................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 »

My last post was only 5 days ago ...how things can change !!
I have always been a bit cocky about swimming and pool excersise ...I now relate to the people who said they couldnt manage the getting out of pool and into the changing rooms ...last 2 swims I have had real trouble , even with my stick and solid walls to lean on .......I have had the stuffing knocked out of me .. my confidence niltch ...and am now considering medication .

have a 3 day Artshow comming up , that Im really looking forward to and have in hand...but following that is a 5day mini nurses reunion in Sydney ...and feel that could well be whats playing havoc in my mind !!#!
Have orderd a wheel chair for the airport bit ...........and Am now thinking maybe hiring a walker for the week?

this is a ramble and pretty negative , but want it up on my thread so can look back at this as just a glitch ..how I do so hope so ............thank you 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 hope the walker you are writing about is a walker with a seat? ............ Water exercises are very good for certain parts of your body and don't give them up however perhaps all you are feeling is the transition from while in the pool the water lifts the body weight from the legs and returns when getting out of the water. For years here on the website I've gotten reports from other OT people having trouble getting out of water, whether it be pool or ocean. We also must remember OT is slowly progressive and we learn how to cope with needs of the changes as we are confronted. Have a great time and will be waiting to hear your reporting in....... 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 »

Well ...I have so much to say !!...wrote a letter to my GP ,telling him I needed help ,explaining how it was, made a appointment some day`s later ,giving him time to `ponder ` my problem ....
He applied for GABAPENTIN which is restricted from the medical board ...took a few weeks to come thru ...am now on 300mg 3 times a day ...amazing ,havnt felt a `real`leg tremor since the first tablet .
One day in, I flew 3hours to Sydney , had ordered a wheel chair ,which I still accepted,and used a hired chair for crowded outings eg ...the Opera and galleries
Often I got out and pushed using it like a walker ,worked a treat .
I was so thrilled to be able to walk down onto a beach ...I realized just how much I had been avoiding ... my GP wants me to double the dose after 2 weeks ...Im thinking of talking this thru as I am so good with just one 3times daily and concerned if I double it I will be too spaced for driving ....will go on the forum and look at what others say re Gabapentin [but dont want to talk myself into side effects]
This has been a real eye opener for me as I have always been anti taking any Drugs .....

A ordered Walker with seat is still coming, along with a shower seat ...I will be using the walker confidently now when out in crowed situtions.... using the wheelchair in sydney has taught me so much and realise its not all that bad :) my being is lighter ,people really are helpful ...all is not so grey ahead ..........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 »

I was concerned about doubling my dose of Gabapentin , so again wrote a note to my GP ,dropping it into the surgery giving him time to think about it before I made an appointment ...I stressed I was really thrilled with how I was, but concerned about driving if I doubled the dose .
He rang in and agreed to leave it at 300mg 3 times a day ...knowing we can increase at a later date if need be ..
`SO JOY TO THE WORLD`...everything is just fine [bar a head cold picked up from airtravel!!#!] ...taking a clay work shop next weekend all of which much easier thanks to my little pill the colour of soft sunshine ...take care all ..Freezing here... main roads closed with snow on both Islands ...guess its our turn for a harsh winter down under :) ...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: Good to hear that you have found Gabapentine is giving you some relief. I have been using Gabapentine since 2000 and for me I'm now at a much larger dosage because of the progression of OT however I love to drive and it has never affected my ability to do so . Watch out for the Wintery ice under foot there in New Zealand.......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 »

It has been awhile since I have been on the forum ..even visiting to see how others are ...Sorry !!#!...dont know if its a good or bad thing ...just getting onwith a busy life and OT .
The Gabapentin 300mg 3 time`s a day is doing it`s magic ...I have decided it is taking the edge off how I cope ....:)
I still avoid things I know will cause OT to trigger big time , I only take on an outing that I `really` want to do ,and am prepared to have payback later ....but admit recovery these days is quicker ...I put that down to Gabapentin ,but also the regular pool excersize....
After my trip to Sydney ,thought I would try a bit of walking on the day`s I dont swim ...no! didnt work for me ...there is no pleasure in trying to walk straight on a narrow footpath ...so just save my energy with studio `play` and the odd food shop ....
Have taken 2 succesful work shops ...I told the organizes what I needed and why ...so things went very well ,even managed to enlighten people about OT ...decided the only way is to be up front about every thing ...so if OT kicks in everyone copes ....this is a ramble and for that I apologize , but Im using this thread as my diary of progress ..take care all ...I am ......Didi NZ
Post Reply