When Lynn was first diagnosed with MS, it was hard to know what to do with all the new challenges. As I was thinking about that this week, I thought maybe sharing some of the solutions we found might make life a little easier for some of you as well. Keep in mind, these were our own little inventions so they might not work for everyone but if they work for you, too, great! If you have ideas that also work, feel free to add them.
Donna
I’VE FALLEN AND I CAN’T GET UP
When Lynn was still walking, he would often walk around using the walls and furniture for support (this was before he admitted he needed a walker or cane). At times, he would trip or lose his balance. Due to his spasticity, it was very difficult when he fell to get him back up; especially when he fell in tight places. One of the ways we found to move him when there was not enough space for us to maneuver was to roll him over onto a “crawler.” Maybe that’s not the correct name for it but it’s one of those little flat board things with wheels on them that mechanics use to roll under cars. I found one that was padded. I could roll him over onto his side and then put the crawler under him. Then I rolled him back onto the crawler and pulled him out of the tight space by his feet. Then I had more space for us to work to get him back up.
NEEDING HELP WHEN NO ONE IS AROUND
I was en route to a conference in Williamsburg one day when Lynn called to say he had fallen and could not get up. I was an hour away and had to turn around to come back. We had no one we could call that had a key that could get into our house to help him. He laid on the floor for three hours before I could get back (one hour trying to get himself up unsuccessfully). Fortunately, when he fell, he grabbed his cell phone on his way down. After that horrible day, we got one of those buttons for him to wear that he can press to call for help wherever he might be in the house. When he presses the button, the company knows how to reach me, our kids, his siblings and mom, and who is doctor is. They also gave us a device to use to lock a key outside and they have the password to get the key out so if Lynn doesn’t respond when they check on him after the button is pressed, they can call an ambulance and the rescuers can use the key to get inside. It’s a must for anyone disabled who is home alone.
MS Caregiver Sharing 
Lynn, I really enjoy your Blog and would love to start one myself. Can you help me in any way or suggest where to start?
My husband has been diagnosed 26 years and his daughter from his first marriage has it also and cannot walk at all. My husband can walk very gated only with a walker which only God could do after being diagnosed 26 yrs! Yes we have been dealing with this ugly disease for a long time.
I have mixed emotions regarding my step daughter probably because she lives in another state.
I do not go to visit her much after her diagnosis. I feel selfish by saying this or maybe it is self preservation, I don’t think I can handle 2.
She has a husband and her mom is always there so she is not alone. Anyhow there is so much to share so if you can let me know what I can do to get plugged in….
Beth, I encourage you to start a blog. It really helped me to feel connected to others when people responded back with comments that reflected the same issues I had. The way I got started was just to sign up for a free blog through wordpress (www.wordpress.com). I read through their tutorials and figured out what I wanted and how to “do the work.” Then I looked up other caregivers, especially those who had family members with MS, and commented to their posts. Then I would link my blog to theirs and often they would reciprocate helping me to connect to their readers as well. Then good use of “tags” when I posted a blog. Tags are words people use to search for information. It brings them to your blog. I also post at times on MSConnection, the NMSS site. I wish you the best of luck with it. If you start one, let me know. I’ll add your link to my site to help get you started.
Donna (Lynn is my spouse)
Reading your blog sounds like my experience. My wife, Chris, was diagnosed with MS in 2004. She is now confined to a wheelchair and has limited use of her left hand only. Her legs and right hand have no ability. As such, her “demands” are numerous. Last night, for example, I was up with Chris no less than 10 times; 3 for bathroom requests including wet linen and pj’s and the others to move her because she was uncomfortable. Unfortunately, I am not the nicest person when I don’t get rest so it leads to arguements. Many times her instructions are hard to understand but she gets upset when I say that I don’t understand. I find myself apologizing numerous times each day. I have trouble controlling my anger and outbursts are more common than I like to admit.
Your situation sounds almost identical to mine. I want to be patient and kind but like you said, when I’m tired, I have no patience and I get resentful. At those times I say things to hurt or try to make him feel guilty. I don’t like that I do that and I often must ask forgiveness but for now, I’m doing the best I can. Good luck to you both and thanks for sharing.
Thank you for the words of encouragement. My prayers for you and your husband.
My hus dx’d 25yrs ago. Still able to walk a little w/walker. I feel like we’re down a deep,dark
and endless well. I find your blog interesting, informative and very, very frightening. I feel
like I’m about at the end of my rope. I have numerous health issues too but feel like I no
longer really exist. I will continue to drop in when I can. This is the first on-line information
I’ve found that gives a really accurate picture of being a caregiver to a person with m.s.
Thanks for your efforts.
I’m so sorry if I frighten you. There are many difficult days when trying to balance work and caregiving but most days are routine and manageable. Unfortunately I often share the difficult because it’s therapeutic for me as well. I encourage you to find as many resources as you can; church, family, friends; to help you share the burden. It helps so much if you can. Please take care and if you ever want to send me a private email, please feel free to do so. Take care.
Any advice on getting a proper MRI for my mother? Last week I took her for an MRI. After an hour of her being in there, I was informed that they couldn’t do the MRI properly because Mom wouldn’t stop shaking. I phoned them in advance and told them she couldn’t stop shaking because of MS. They said “That’s ok we have ways to deal with it”, but that’s not what happened. Mom said they just yelled at her.
Any ideas?
Lynn has always used Valium. Most of the time that worked but occasionally,his muscle spasms would be so severe that the MRI had to be rescheduled. Usually he can get by with 10 mg but there have been times he had to go up to 30 mg. With those times he feel asleep and that seemed to help relax his muscles enough that they could get it done. Good luck. I hope this helps. Lynn’s spasticity and muscle spasms were so bad he had to eventually get a baclofen pump implanted to get the dose directly into his spinal fluid to work. Is your Mom on anything?
Thanks for replying so quickly.
Mom’s on Copaxon and various other drugs for other medical conditions. Recently she went off a whole bunch of drugs, because her doctors thought that the drugs sideeffects were causing problems.
The pharmasy gave her a drug that wasn’t perscribed. (They made an error on the drugs she was taking). Because they are in bubble packs, she didn’t notice. That drug interacted with one of the drugs she was supposed to be on, and within weeks she’d lost her ability to walk, and her cognitive function decreased.
Her drugs were streamlined, with many taken away. We were told that she’d recover fully because it was the medication, and not the MS. But that was in Septemeber and she still can’t walk and has coginitive problems. Although her cognitive problems have improved, they arn’t what they used to be.
Her neurologist ordered and MRI just to see if it was MS, but she really didn’t think it was, and thought this was to rule things out or find something new. And then her neurolgist got sick herself, had emergency surgery and closed her office. We got a letter that the office was closed. I can’t get ahold of anyone to transpher her records.
So in March we have an appointment with a new neurologist. We also have an MRI that was useless because she moved too much.
I’m so sorry. Sounds like she may have had an exacerbation brought on by the medication problems since she didn’t fully recover afterwards. Lynn tried steroids for exacerbations a time or two and they didn’t work; then his doctor suggested trying apheresis (it’s like dialysis only you take 5 treatments, the tubing is in your neck or leg, and you take it every other day). It was awesome. He was showing improvement by the second morning and really responded well. It’s something to consider and few doctors use it except as a last resort. IT can make you anemic so if you already have a low hemoglobin, the doctor probably wouldn’t consider it. Lynn was on Copaxone for several years but he got progressively worse on it so he switched to Rebif and is now on Tecfedora because he felt too bad on Rebif. Hope you get in soon to see your neurlogist. Our best to you and your Mom.
Did you husband lose the ability to bend?
My mother has lost her ability to bend her legs and her hips. She’s straigh out flat as a board. She can’t sit or anything because she can’t bend. Her toes are splayed in odd directions as well.
That sounds like spasticity and yes, that happened to Lynn too. His came and went fortunately but his legs would get so stiff that with all my strength, I could not bend them. That’s when we decided to have the baclofen pump implanted so he could get it intrathecally (directly into the spinal fluid). It allows better use of the medication by the body so higher does can be used. He no longer has that problem with his lower limbs. He does somewhat with his arms now but he’s using botox to help with that. Has she considered this option? It does require general anesthesia and a short hospital stay but it was well worth it for him.
Hello Donna! It’s been a long time since I have written on your blog. Life here has been good and sometimes outright rotten. I know all of us on your blog can relate!!! Thank you for giving me the info to set up a blog. Now that it’s been almost a year and I am picking this up should I still use the same steps you gave me or has Technology thrown that out for a new way? It is hard for me to adjust to something that changes way too frequently!!
As far as I know, I don’t think anything has changed. Some of the formating when you get started might be different but since you are learning it for the first time, that won’t bother you. Good luck and let me know when you get stared so I can “follow” you!
Donna, I am sole caregiver of my wheelchair bound husband who has SPMS. I am reading your blog and I find myself relating to so much of what you are experiencing. I am desperately looking for help with assistive devices (everything from writing utensils to mattresses and everything in between that you have found helpful) so that my husband can still feel some independence and also be comfortable while i continue to care for him at home (which i intend to do with all my willpower). Would you write some about this? I am sure i cannot be the only one who needs information like this. We have a wonderful neurologist and OT; however, they are limited with suggestions. I guess you really have to be in the thick of it all like us caregivers. Thanks!
I do plan to write something soon on this topic but in the mean time I wrote something in one of my older blogs that might help. Have you read this one? https://mscaregiverdonna.wordpress.com/2011/08/20/necessity-is-the-mother-of-invention/
No I hadn’t read that blog. Thank you!!! I love the tabletop for wheelchair. Would definitely help with my husband’s posture. Until you find time to write on that topic, i was wondering if you could please provide some advice on the type of mattress you use. I turn my husband every two hours throughout the night (he can no longer turn himself) to avoid pressure sores (being an RN, i have seen my share of them and am determined to avoid that from happening in this house) and also because he is not comfortable laying in same position for longer than that. Our mattress is 8 years old and in need of replacement. He is not mentally ready for a hospital bed.
We use a sleep number bed and a memory foam mattress top and that has worked well for him. Lynn is not mentally ready for a hospital bed either. I also added a triangle foam elevation block under his mattress head to keep his head up and I have a handrail inserted under the mattress for him to occasionally hold on to but he has very little grip anymore so that does not work very well now.
I will look into the sleep number bed. Thank you. You mentioned your husband is challenged with his grip. My husband as we speak is losing the use of his right (dominant) hand. And as you very well know, that increases our load. The grabber he can no longer use, so we become the “grabber” to pick up the things dropped on floor. Some days lately, he has even been too weak to hold his bottled water or feed himself. I can go on and on…. but it sounds like you have been there and done that. I have so many questions to ask about how you do things to help your mate and keep him well cared for at home. I will look at your other blog entries to try and learn more about what will help me (us). I just want to say that i am so happy to have found your blog because I am comforted to FINALLY read about a caregiver who has gone before me and experienced what i am experiencing. There are not a ton of us Advanced MS caregiver wives out there who are where we are (and also because this is a disease that affects more females than males). So I say – thank you for blogging!