Progression

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Moderator: gloria

Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

UPDATE: First I'll comment on the leaning that Golfnut mentioned. I can lean much longer the more body mass I'm resting on. So, leaning with a hand or even the side of my thigh is much less helpful than when I back up and lean my hips. I can get by pretty well in the bathroom or the kitchen by leaning fully on my thighs and tummy against the counter. And yes, leaning on one foot, or with my feet away from whatever I"m leaning on, also helps. I guess that's just less surface weight to cause the tremors.

Ok, update on meds: I have had to decrease the Gabapentin from 600 X 3 back down to 300 X 3, I had tried to double it hoping to handle both my migraines and my tremors. I had every side effect under the sun, so I'm just now ramped back down. Tremors are back down to ok, meaning the urgency to sit is quieter, but no way can I stand unaided for any amount of time. If I really concentrate I can last a few seconds, but I get uncomfortable fast and need to sit, or at least lean. For the migraines, I am now going to go to a calcium channel blocker. I won't even name it here, since this is not a migraine forum.

I have just been fitted for a wheelchair. Wow, this has been tough. I have a walker, but the tremors just leave me feeling so unsteady, and the walker just doesn't work to try to propel with feet, which is my natural tendency. So, I was surprised into another level of reality as the wheelchair guy asked if I have fallen. My first response was "no" not lately. Then he asked about how I use my walker, and how I get around the house. I described how I sit immediatly in the walker, just to talk with someone, wait for an elevator, etc. I have made up a new term for how I get around the house and that is "Wall Surfing". I sometimes litterally walk in the hallways with one hand on each wall. When there's only one wall, then I walk one after the other on the same wall. Then the shock came. He said, each time you sit in the walker, or grab a wall, or catch yourself against a wall or counter, or a person actually catches you, those are all considered falls. If you didn't have that thing to lean on, that person to catch you or hold you up, then you would very likely fall. Wow. He had no question that my insurance company would fund a lightweight, folding, manual wheelchair.
So, now I'm working on adjusting to dealing with this as a reality, and as my neurologist pointed out, a wheelchair is just another tool. I was even shocked when she so unquestioningly prescribed a wheelchair for me. Some of you may remember my earlier posts when I saw a different neurologist, just a few months ago, who wouldn't even prescribe a walker for me.
I am still in shock, just barely a year ago I was taking line dance lessons. walking three miles set to music meant to encourage a work out. Now, I'm so unsteady I don't even dare take my garbage across the parking lot alone. I was just chuckling yesterday as I walked the few feet from the rails on my steps to the car parked at the curb right in front of me, that now even THAT feels risky.
My hope is that things will settle down shortly, and I can adjust to whatever things level out to be for awhile. I'm counting my blessings that I can still function ok in my apartment, even though I may need to move because of getting the wheelchair out of my apartment building which has several steps up and down. But, at least in close quarters I can get by with leaning and Wall Surfing. I can also go to places where I know I will only go straight in, sit and back to the car, as long as I'm with my boyfriend, who is very strong and is learning to help me so as not to injure himself in the process. Life can be a challenge, but so far, I still feel like I can adjust and find a way to deal with things even if it means in different ways.

Marlana
podhorodeckisz
Posts: 15
Joined: Thu Sep 09, 2010 9:40 am
Location: Sandbach, UK

Re: Progression

Post by podhorodeckisz »

Hi. I'd like to add that I've had my symptoms since 1988. They gradually got worse over about 2 years but have remained reasonably static ever since, apart from getting temporarily worse at times of stress, heat or exhaustion. I only got diagnosed about 2 years ago as OT in UK is virtually unheard of.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

Update: I haven't posted in awhile, to be honest I've been reeling a bit with migraines even more so than the OT issues. Today I'm ok so far, so here I am writing an update. :)

I have moved to an apartment that promised to build ramps for my wheelchair. After I moved, they then said they couldn't build ramps because they were too expensive. I got an lawyer and now I have two of the best ramps in my little town. :)

Daily life: OT symptoms seem to be settling down into at least a fairly constant level. I only need to use my wheelchair sometimes in the kitchen for tasks that will take more standing than just getting a frozen dinner into the microwave. The tremors seem more manageable than earlier. I don't go outside without a wheelchair at all. I can use my walker if I just go for a walk, not to accomplish anything, like shopping or something. Since I don't have steps where I have to stand and lift the walker, then I can use it to walk about a mile in predictable no-stopping situations. I have also used my wheelchair to sit in when the going is easy, and I can get out and push it if things get too hard to push while sitting. I do feel odd, like people probably don't understand how I can get up and push my wheelchair, but I'm learning not to care about what I look like. My independence is more important to me than fulfilling others, or at least what I think, others expectations are of a person in a wheelchair.

I'm still taking Gabapentin 2 x 300. I don't know if it helps or not, I think it does a little. So for now I'm continuing it.

The good news is that I think the free fall feeling is now settled down and this level of functioning is probably where I will stay for awhile. Adjusting has been more than a challenge, For several months I needed the wheelchair much more in my apartment, now it's minimal. I am leading a very quiet life, but that has more to do with the migraines than the OT.

In a nutshell my progression has been like this: First symptoms I can look back and notice were in 1997, very gradually increasing until about March of 2011 when I began noticing trembling legs enough that I couldn't blame it on other things. Began to seek diagnosis in August of 2011. Got a walker about that time. Started trying medications, almost no standing time by January of 2012. Got a wheelchair using it about 50% of the day, unable to use walker at all. Dropped out of all activities, moved to wheelchair accessible apartment. Symptoms began to settle and improve slightly about July of 2012. Now it's Sept. 2012; use walker only on predictable walk with no stopping, must use wheelchair outside of home for most other outings, and only slightly inside the home. Tremors are still almost instant upon standing but more tolerable than before. Leaning works again for a few minutes at a time. This seems to be the new normal.
Francesca
Posts: 4
Joined: Mon Jan 18, 2016 6:00 pm

Re: Progression

Post by Francesca »

I have just read Golfnut and agree with what he has said about Dr. Bain's diagnosis, I saw him and was diagnosed 20 years ago. He put me on Clonazapam, Gabapentin, Primidome, (not all together!)all of which I took without much help. I was then On Pramepexole which seemed to keep me stable for a while. It has been More or less what Dr. Bain predicted. I cOuld cope with the standing tremor but since my husband died 6 months ago, the tremor has
Accelerated and I am now taking Clonazapam a second time around. The tripod walking stick I find is a reassurance
But I am finding walking more difficult and I am worse at the beginning of the day. I have 'dismissed' my last
Neurologist as he admitted he did not know what else to give me. I try not to worry (ha ha) and am thinking of
Going to meditation classes for the control of stress. Just grasping at straws reallybut not give in or give up.
Good luck everyone.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

UPDATE: This is the place we have been talking about the progression of OT so I think it's also important to note that it is possible, at least it has happened in my case, for OT to get better!
If you read just a few entries above this one you will see that I was using a wheelchair and walker. Now I don't use either! I'm legally blind, so I do use a white cane, and at times I will use it to lean on if I find myself standing and that does help me if I get caught in standing situations. But this would have been unthinkable before last October's visit to my chiropractor, Dr. Joan O'Connor in Portland, OR. She specializes in craniosacral and occipital work and didn't do any of the snapping and popping type of ciropractic manipulations.

I noticed the difference in the second visit, and that's because the first visit was focused on back pain. The minute she was focused on the tremors I was able to stand for longer times the very next day and I've been improving ever since. I'm now dancing in clubs for 3 hours at a time and going for 4-mile walks with no problems. I even went shopping for five hours.

So, I'm here to say that the progression does not necessarily have to go downhill. Medicine may not be working, it didn't help me either. Who knows what may help set your OT clock back by decades. We still don't know much about OT.

I know it's hard to keep hoping. I did stop hoping. I stumbled into this by accident because my back hurt not because I was hoping to find help for OT. You really don't know what might be right around the corner, I sure didn't.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Progression

Post by gloria »

Marlana: Good news in your case, you have found a chiropractor who specializes in craniosacral and occipital work and [quote] "I noticed the difference in the second visit, and that's because the first visit was focused on back pain. The minute she was focused on the tremors I was able to stand for longer times the very next day and I've been improving ever since." ] You have mentioned in many of your posts that you also suffer from migraines, did this procedure help them in anyway too ? Interesting report, Gloria
Francesca
Posts: 4
Joined: Mon Jan 18, 2016 6:00 pm

Re: Progression

Post by Francesca »

Thank you for, Mariana, that is very encouraging. I have never heard of anyone improving with OT. That has given me hope.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

Yes, Gloria. She also worked on migraines and indigestion. The migraines are MUCH better so much so that I can sometimes get by with just tylenol, I am taking zonisamide as a preventative as well, but this is still huge for me. I'm now down to only an average of about 7 migraines a month and rarely do I have to lay down with them.

The heartburn, which I was taking daily Prilosec-like drugs for is now almost completely gone and I'm taking no medication for heartburn at all. I'm also no long hypoglycemic. I just get hungry but not light headed or feel like I'm going to faint.

Oh, as for the Gabapentin, I went completely off of it for the tremors, but I have restless leg, so I went back on 1x300 just for that. If it wasn't for the restless leg I could be off it completely.
I did find a very effective, but expensive natural remedy for restless leg called Seratame. It's great, but it costs about $40/mo so I had to go back to gabapentin because it's cheaper.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Progression

Post by gloria »

Hi! Marlana: I must say that I admire the way you have and are dealing with this ban called " OT"! You appear to have other difficult health conditions that exacerbate your OT than the average OT person has to deal with but you are realistic and fight back!!! The fact that you are legally blind must be one of the factors that is most challenging for your balance. Our sight and hearing are both thought to be two of the most provoking factors in life with OT. Nonetheless with progression of OT we need to maintain our strength and hope and support more studies to help us in the future. Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Progression

Post by gloria »

Francesca: I think your idea to taking meditation classes is good ...it is one thing that has not been suggested on the website for stress that I can remember. My aunt who did not have OT but did have other stress problems practiced meditation. She was a very intelligent woman and managed to control stress in her life very well for many years thru meditation. Please let us know how it might be of help for you. All the best, Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Progression

Post by gloria »

Hi! All OT Friends: I'm thinking of the progression part OT is playing in my life and how the normal directions that was intended in my life are now disrupted just as they are with other OT'ers. We manage to balanced some things with coping skills however some OT friends have other health issues plus OT which calls for additional adjustments and so it goes with this OT within us. I have been lucky because I never get headaches or colds etc. and live in healthy otherwise body except for 30 OT years. How are you doing? Gloria
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: Progression

Post by DEEmou »

Hi Everyone...I was diagnosed almost 1yr ago with O.T.and.upper motor neuron signs .noticed mild symptoms possibly 18months prior..desire to sit frequently..tripping..and shaking in legs on standing/descending stairs etc...progressed from there ...seems several have also migraines,I too was diagnosed with them when I saw my neurologist..Prior to diagnosis I worked directly with children with Special Needs a job I loved dearly...quite active and outgoing person..Now I work 1 hour per day in a small kitchenette overlooking the classroom doing a lunch duty of which I am very grateful as I still see the little one's..this is achievable as I can lean on counters and my boss has kindly put in place a stool for sitting..I don't use walking aids yet as I don't feel the need.
I'm on 3600mg of Gabapentin per day find it has helped VERY slightly but side effects not so pleasant extremely fatigued at times..tried to have it reduced starting by 300mg per day in the hope of perhaps reducing it further.. then the sudden jerks in my legs/arms some mild others quite pronounced started..very disappointed as I had to go back up to full dose. I think that's what gets me most not being able to do what I use to do.
Yesterday I was having a reasonably good day so met up with a friend for coffee..a little walk through the mall and on to do my hour at work...today I'm exhausted and in quite a bit of pain particularly noticed the calves of my legs very
Hard. Feel anxious when anybody stops for a chat as I know I need to move along :D I'm sure they think that odd..as I don't explain why ..can chat for a few minutes only as long as I shift my wait ..no standing still :shock:
I personally get by in my day..by doing a little at a time..I dislike being idle gives way to negative thoughts...I try to remain positive and believe distraction is,a wonderful tool.
I have had very few social occasions since this has begun as I choose to avoid them ...saves embarrassing situations and the feeling that I may have to explain what is wrong with me..also with the dose of Gabapentin I'm on I simply have not the energy for such.
I am given hope by reading other posts hopefully my progression will be slow and I can continue to adapt in my own way. I feel like others it almost becomes a natural way to live by adapting as we go along without making too much of a fuss or issue about it, although it certainly is a physical life changing condition .
Best wishes to you all. DEE
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Progression

Post by gloria »

Hi! Dee: I understand well the changes in your daily life because of OT. I've lived with it for 30+ years and because it is such a long period I have felt OT's ability to pluck away at my standing and ways of life in general. Mentally it has been more difficult now with normal aging process on board. In the beginning it is so hard to explain and have people understand that you can" walk for a miles but can only stand for minutes." OT is life changing but not life threatening and with OT just as you are doing so well it means a lot of adjusting Always good to hear from you........remember we must learn from each other.

Keep us posted, Gloria
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