MS Information

Information about the condition, its diagnosis, treatment, progress

My Role as a Physical Therapist

Personally, I have never been good at exercising.  I hate it.  I might feel much better if I stayed with it a while but I’m so out of shape that I feel awful doing it.  Not so, for Lynn.  He has always been good about doing some type of exercise almost every day. The major difference now is that I have to help him with it. Therefore, one of my many roles in caring for Lynn is to be his personal physical therapist.
For anyone, but especially people who have conditions that produce fatigue, keeping conditioned is essential to conserving energy.  If the muscles don’t work efficiently, it takes a lot more energy to do the simple tasks of everyday life.   Lack of stimulation to the muscle groups causes them to become de-conditioned which require more oxygen and other support from the body to make them work correctly.  When Lynn was in the hospital so much in 2010, he was told that for every day of inactivity (i.e., being confined to bed) he experienced, it would take approximately a week to regain what was lost due to deconditioning. He found that to be true to a large extent.  It has taken him years to build back up much of the strength he lost during those three hospitalizations and some of it has never returned to the same level.
There is not a whole lot you can do to prevent the progression of MS; however, if you keep fit you’re more likely to be able to maintain greater strength and endurance than if you are out of shape.  Lynn does not want to give up and let me do everything for him.  He wants some control over his condition so exercising is both a mental triumph as well as a physical one. Here’s some of what he does.
Read the complete blog here:

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Like father like son

Husband and wife out for a stroll.

Lynn’s son might have MS.  He is still going through testing and if he has it, it’s very early in the disease process.  Lynn’s father had MS, then Lynn, and now his son.  When Lynn was first diagnosed we were told it was not a genetic driven condition but there might be a predisposition to it.  Well, based on this family’s history, I’m inclined to think heredity plays a big factor.

We have shared information with Lynn’s son about signs and treatment as we have learned about them.  He and his fiance have also researched it a lot so they decided to go to a new doctor and get a complete physical just in case.  He was seeing the same doctor that missed Lynn’s diagnosis and when vision pain started and that doctor didn’t take it seriously, it was time to move on.  His new doctor referred him to a neurologist so we asked Lynn’s doctor to take him on as a patient, and he did.

His son’s symptoms are very mild–hyper-reflexes and a blind spot in his left eye.  He may not have MS but just in case, he is having an MRI.  If it is MS, he will have gotten it diagnosed early and treatment can start early so he may not have the same problems Lynn had.

But even though we knew it could happen, and we knew all the above, it felt like a gut-kick when he told me he might have it.  I know he will handle it well and I know we will be there for him, but I had so hoped he wouldn’t get it. He is very different in his hobbies and what type of chemicals he has been exposed to so we had hoped he would be spared  and maybe he will dodge this bullet too, but it was a gut kick anyway.

His son is handling it very well.  He is taking it in stride and he and his fiance have a great attitude about it.  I was worried about how Lynn would take it but he has also handled it well.  I guess over time we have all prepared ourselves for that news…so it’s just one more adjustment and one more detail that is part of who we are.

But it doesn’t mean I have to like it.

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Starting Down the MS Road

I knew very little about MS when Lynn was diagnosed.  I knew that it was a nerve condition and that it was often first diagnosed due to vision impairment.  I also knew that it affected a person’s ability to walk.  However, I knew very little detail about it–like there were four types.  So my first way of coping was by reading.  I love to read.  If I’m sitting still, I have to be reading whatever is around me (unless I’m watching TV of course).

I have found that the more I know, the better I can cope with what is going to happen not so with Lynn.  I was looking up everything I could find on the internet and reading all the information we were given by the doctor. He didn’t want to know anything. Still doesn’t. I would find something that I wanted to share and he would tell me not to.  He has the belief that if you know what COULD happen (i.e., the bad things) then just by remembering, they are more likely TO happen. There’s something to be said about that.  If you feel bad and don’t know what is wrong, you keep pushing ahead but if you find out that you have a serious disease, then suddenly you start acting more like you have a serious disease….not everyone… but a lot of times that happens. So I look up things and keep them to myself.  I also find out things from the doctors or other healthcare professionals about what could happen and keep it to myself.  It’s hard not having anyone to share that with.  I respect him not wanting to know, but it’s hard being the one to know that the procedure he’s about to have could result in x, y, z.  Most of the time it won’t, but I’m a realist, and so I look at all those possibilities and think about the “what if’s” a lot.

That’s the main reason I started this blog. I don’t have anyone to talk to about the “what ifs” that understands.  I’ve thought about joining a caregiver support group, but that is impossible for me.  Lynn can do very little to help himself right now and cannot be alone for long periods.  It’s difficult to have someone stay with him while I’m gone because he’s on intermittent catheterization and he cannot help transfer to or from bed to wheelchair.  That limits who can help a lot.  We also live in a rural area some 45 minutes from Richmond, so anywhere I would go to attend a meeting would mean being away a long time.  That is just not possible.

When Lynn was in the hospital recently, I met another wife of someone with MS.  We had a lot in common; particularly the inability to go to support groups and the desire to share with someone who understood.  I thought then that maybe there was a way to have a virtual support group online.  I set up a Facebook account, but I don’t know how to get the word out on that plus I don’t want strangers to have access to the lives of my “friends” so I thought maybe a blog would be better.  A blog would allow me to share and others to comment and share as well.  That would be the closest thing to an actual support group.

So if you also want to share your story, trials, and concerns, I’m here to listen.

Just a few suggestions about sharing:

  • Remember whatever you say is public and may be seen by anyone, copied to other locations, or misconstrued so be careful what you say.
  • I recommend not fully disclosing who you are or where you live so you can maintain some privacy, but that’s up to you.
  • Keep it clean.  Please do not use profanity, make crude comments, be disrespectful or insensitive.  If you do, I’ll delete the comment.
  • Please do not use it to add spasm, solicit business, or bash anyone.  Again, …I’ll delete it.

My hope is this blog will be a place to share and gather support.  If you have something to share or something to ask, feel free to post a comment.

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