Neuromuscular In memory of Rose Marie.


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Old 02-25-2009, 07:49 PM #1
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Default Myatonic Dystrophy Type 1 ... Adult Onset

Hello:

I'm new to NeuroTalk and this is my first time posting in the Neuromuscular forum.

I was recently diagnosed with Myatonic Dystrophy Type 1 (Adult Onset). Unfortunately I was being treated for a work related spinal chord injury ( Cervical Radiculopathy and Myopathy ) and due to some similar type of symptomology we missed the onset of the Dystrophy and many of the symptoms I was presenting with were being attributed to the SC Injury and no one caught on to the increasing symptoms of the MD until some unusual symptoms popped up that couldn't be attributed to the SC Injury ( like suddenly realizing that if my head fell forward with my chin on my chest I was not able to lift it back up unless I literally picked it up with my hands ...) Well, needless to say it wasn't long after that I was referred to one of the neuromuscular clinics and the diagnosis of MD followed after a multitude of tests were done.

I'd be interested in hearing from anyone who has had some experience in coping with the Myatonic Dystrophy ... coping strategies, etc for dealing with some of the limitations I'm now learning to deal with. I currently am able to walk with the aid of forearm crutches but continue to have problems with falling ... good days/bad days ... I also have a motorized wheelchair now that I use for distance travel/walking and for those days when the fatigue is overwhelming. This is all very new to me ... the doctors from the neuromuscular clinic are very good and helpful, very supportive ... but it would be nice to hear from others dealing with the same or similar condition ... your experiences ... any suggestions for coping ... etc. Where I live there is limited access to specific support services and groups. It would really be nice to talk to individuals dealing with similar situations and circumstances.

We're looking forward to hearing from others here and sharing information.

Hoping everyone is safe and well this evening and wishing everyone peace, comfort and resolutions to all that you struggle with: Kefrin
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Old 02-26-2009, 07:37 AM #2
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Hi and welcome. Hopefully there will be folks here who can help you. My late sister-in-law had myatonic dystrophy, as well as at least one of her sisters. My niece has it, as does her 19-year-old daughter.

If you don't find the information/support you need here (which you probably will!) I will contact my niece and see if she might be interested in getting in touch with you. She is a helpful and generous soul, so it would surprise me if she were not so inclined.

Wishing the best for you during a difficult time.
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Old 02-26-2009, 08:23 AM #3
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Thank you so much for your kind offer ... I really appreciate it, because of my career I've had a lot of experience working with individuals who have special needs of all sorts. It's been very strange for me since being injured and then developing the Md ... to have the "tables turned" so to speak. Where I was one of the individual doing the care giving or assisting individuals with special needs, I now find myself in the position of having to receive the services of others ... it's a very odd position for me to be in and I've had a time adjusting to the role reversal. Also ... this is all very new to me and I've just begun my journey into researching the conditions and limitations I now contend with on a daily basis ... I sincerely appreciate all the help and sharing of information.

Take care, be safe and well: Kefrin
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Old 02-27-2009, 01:50 PM #4
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Bumping this up so someone might notice it. I haven't heard back from my niece yet!
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Old 02-28-2009, 10:20 PM #5
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Hi Kefrin! My friend , her two daughters and her sister all have myotonic dystrophy...from a young age for her daughters and no one is sure about when the onset for the adults was. My friend does Ok however she gets tired easy and sleeps alot at times. Her oldest daughter has alot of difficulties mentally and her youngest was not supposed to live any more than a few days. She had some deformities in her mouth and could not suck when she was little...she was fed through a g-tube for months. She has more severe mental difficulties than her sister and was born with club feet.
Even though they have alot of challenges they are doing Ok. I cannot tell you alot about the disease....I am sure you already know a fair bit if you are living with it! Pop in and share about yourself...any advice etc...I can pass on. It is good for us all to share what we can!!
Take Care and see you around!!
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Old 03-01-2009, 04:35 AM #6
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Hello Dorrie:

Well, I've got to admit, I'm just starting out on this journey myself but what I do understand is that when the condition develops in childhood it definitely is a much more serious condition than the form that initiates in adulthood. Originally, when I was first being diagnosed they thought I had Myasthenia Gravis, as the symptoms I was presenting with were very similar to MG. I was sent to the Neurolmuscular Clinic in London, Ontario ( Canada) to see a Dr. Nicole who is apparently one of or "the" authority on MG in N.A. ... his diagnosis was that I did not have MG but through further genetic testing, came to the conclusion that it was Myatonic Dystrophy Type I ( there are 2 types but I'm not entirely certain what the exact difference is between the 2 types ): Adult Onset. At the time I was presenting with very serious symptoms but we didn't realize that my potassium levels and the electrolytes in general were also way out of balance and once we got the potassium levels back up to normal range the severity of my symptoms did abate.

Unfortunately the complicating factor for me was that I was also contending with a work related injury that involve damage to 3 cervical vertebrates and herniated discs between c4, c5 and c6. I was having mobility issues related to the spinal chord injury that were not responding to treatment ... that's when the doctors began to suspect that something else was wrong ... the MD was the complicating factor. As a result we missed the onset of the MD and I've lost a lot of functioning that could have been avoided had we caught the MD. As the doctor explained to me at the time ... "If you got to have a choice between what types of dystrophy you were going to have ... you'd want the Myatonic variety over Myasthenia." The chances of comorbid conditions like respiratory infections can prove life threatening to someone with MG but are much less likely to do so than with the MD/I. As he put it to me then that if I was careful and made sure those complicating conditions were treated promptly ( like not letting the colds and flu develop into bronchitis or pneumonia by getting them treated when I first notice the symptoms ) then Old Age was likely to be the only complicating factor I would have to worry about. Unfortunately because we did miss the onset of the MD, I've lost some physical functioning that I won't be able to regain but he did assure me that with the proper medical care and monitoring my own general physical health we can slow down further progression of the MD.

I currently rely primarily on forearm crutches for walking as my gait is off as is my balance and I have a motorized wheelchair for those days when the fatigue is bad or for use when traversing distances and on uneven ground. But I try not to use the chair as much as possible ... plan to stay on my own two feet for as long as possible.

I do have to watch the fatigue levels, over doing things physically can leave me with bad days when getting up and walking around is very difficult ( almost like chronic fatigue symptoms or Fibromyalgia type symptoms ). I tend to function better physcially and mentally in the mornings and earlier afternoons. When it gets later in the day I do notice that the fatigue settles in ... I sort of run out of steam around the dinner hour. I find that if I pace myself throughout the day and don't over do things I can function better later in the day ( when I know that I have some sort of social function to attend to in the late day or evenings ... I make sure that I have a very light day activity wise so that I'll be able to handle those social functions that occur in the evenings.

hmmm oh, how could I forget ... I also have a service dog that assists with some physical tasks. Just makes some things easier for me through out the day and when I'm out in public. She's a small dog ( we trained our existing companion animal to be our SD ... ) a cocker spaniel, and right now she fills the needs I have but they say that eventually I'd do better with a large dog that could assist with balance and mobility issues. So, when it comes time to retire Bailey we'll be looking at a larger animal for SD purposes.

Your friend may have less severe mobility/physical issues than I do as the MD is complicated by the spinal chord issues as well.

I do have some internet resources, etc that I've found when researching the MD. If you or your friend is interested I'd be glad to pass on some of those links.

Well, honestly we could go on forever in relating information but, this hopefully will help some ... I'm still looking into things myself and every time I see my neurologist at the neuromuscular clinic I acquire a little more knowledge and bits of information. As I said earlier, I'm just starting out on this journey as well. Many of the links that I have do address both types of the Myatonic Dystrophy as well as childhood and adult onset types as well.

I do hope some of that helps out your friend. We'd love to hear more of her story as well, if she's comfortable sharing some information.

Take care, hoping you're safe & well this evening and wishing you peace & comfort and resolutions to the challenges you're struggling with as well: Kefrin

Nice meeting you!!
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Old 03-01-2009, 08:34 PM #7
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Hi Kefrin!! That stinks that you have spinal issues!! I am sorry. Does the doc think that your mobility will improve in time?( from the spinal injury) My friend does not need any help walking however she has some wasting of her muscles in her calves. The muscles in her face have lost tone as well and she has a bit of difficulty speaking clearly...both the kids have this as well...the youngest is very severe as her teeth have grown in severely crooked....the same girl can not print or write so the high scool uses a computer for her to do her work!!! It is her computer that the school gave her and has been with her thru public school and into high school! The girls may have some problems but they do not lack a sense of humour!!! They are so funny and so loving!
I noticed that you live in Ontario!! I live in Keswick, Ontario...north of Newmarket! I think we are only a matter of a few hours apart Is it cold there like it has been here!! It just dropped a couple days ago to -20ish...brrrrrrr!!
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Old 03-01-2009, 09:21 PM #8
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Hi again Dorrie:

We're just outside of Windsor ... way down in the elephant's trunk ... I moved recently and now if I step out on my Balconey and look to the right I can see Detroit Mich. and the river. In the summer Bailey and I can go down to the river and walk around down there ... much easier to do now that the motorized wheelchair is here ... I walked it a few times last summer ... lets just say Bailey and I had some great naps when we got back!

With regards to the SC issues. We have done physio for the non-MD related conditions and have regained about all the functioning we're going to in respect to that. Further progress or regaining of function was complicated by the onset of the MD. I also have issues with slurring of speech and problems projecting my voice, that's MD related as far as I know. I've also lost some Fine Motor control, which I really miss as I used to do a lot of craft work, music and sketching/drawing to help alleviate stress, right now we're in search of a local art therapist that might work with me on developing some related craft & art techniques that I could do without too much difficulty ( also, as a result of the SC injury I have severely altered sensation in the left forearm & hand and a total loss of sensation in the right forearm and hand ... that really limits what I do with my hands ... I used to do calligraphy by hand, now I do it with the computer and almost all my journalling and art work is done on the computer ). The muscle tone in the facial areas has been affected as well, got some droopy eyes going now and occasionally swallowing problems when I get very fatigued. When I see pics of me before the onset of the MD compared to now I can really see how the diminished muscle tone has changed my appearance.

I've worked with students who have been given adaptive devices like computers and printers to do their school work, it's nice when they manage to come up with the funding to do that. They have access to some great voice activated software the the school boards will load onto those computers as well, should the student's ability to type become limited. Co-Writer is one of the best ... Dragon Speak is pretty good too but Co-writer is more adaptable to individual needs and abilities.

Darn, it's bitter cold this weekend ... the wind is absolutely wicked, even Bailey is considering to learn how to use the toilet she's tired of having to pee outside!!!!


Take care, be safe and well: Kefrin
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Old 01-08-2015, 02:49 PM #9
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Please note: There is now a very active organization for "Myotonic dystrophies" offering lots of info, support, educational webinars, funding lots of research.

See: myotonic.org

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