Being in a wheelchair is no joke. The wheelchair represents the loss of freedom to walk on your own power. That is huge. The mental and emotional tolls are tremendous. For the MS fighter the loss of walking (even assisted walking using a cane or walker) is devastating. By the time the MS fighter has made it to the point of being in a wheelchair they have already dealt with many losses of freedom and had to deal with them mentally and emotionally. The unknowns become much greater and sometimes grimmer. Like I said being in wheelchair is no joke and should be taken very seriously by the MS fighter and their care partner/support people.
For the care partner the wheelchair is a game changer. There is a lot of planning. Is this place or that place wheelchair accessible. Sometimes requiring a quick trip ahead of time to find out. Learning how to support your MS fighter during this change. Having a vehicle that can accommodate a wheelchair and lugging it in and out of the vehicle. Wondering if they are going to ever walk again or maybe this is an indicator that they their health is going to continue to get worse. The emotional toll of seeing the person you love and care for struggle so mightily both physically and emotional is very tough.
I know all of these things very well because we have been through them. If you think once you are in a wheelchair it is a life sentence I hope to break that thinking for you. I have seen it. Jenn was in a wheelchair for 5 years and has been out of it for years now.
Jenn did the "progression" of cane to walker and then to a wheelchair. This progression was over a period of a few years. Just like when she got her cane and walker she wanted nothing to do with the wheelchair. She knew it would bring relief and allow her to go places and not have to worry about "gassing out" in 15 minutes. Like the cane and walker she got used to it and came to terms that it was a good thing. I did encourage her to give the wheelchair some personality and she did. At Christmas she would put garland in the spokes and a ribbon in the middle. We looked into small battery operated lights but did not end up doing it. She decided to share her love of cats to world by putting cat stickers on the backside of the back rest portion.
One thing didn't change. She came to terms with the wheelchair but did not accept it. Big difference. By coming to terms with it she was agreeing that the wheelchair did serve a useful purpose and wasn't going to give anymore push back on using it. She refused to accept because by accepting it she felt that she had given her MonSter the power and accepted defeat. She was determined to do whatever it took to get out of the wheelchair and even if it meant going to using a cane or a walker.
Her quest to get out of the wheelchair had her hyper-focused to find a solution. She knew that some how or some way there was something she could do to get her out of it. One change we made was going to a naturopathic doctor. She put Jenn on a really heavy vitamin routine. The vitamins did not really seem to do anything for her MS but her hair and nails grew at a freakish rate.
The real breakthrough came after Jenn had read some studies on the benefits of vitamin B-12 can have for MS fighters. She took this information to her naturopath and asked for her thoughts and she believed it was worth a try and wrote her a prescription for B-12. I was the one administering the subcutaneous shots twice a week. She very quickly started seeing improvements. It looked like the B-12 was really working.
Jenn started feeling less tingling and numbness, the thought to speech process was improving, speech became clearer, eyesight was getting better and most importantly her leg strength and balance were improving. After about a month she had ditched the wheelchair and was using her walker. Her stamina wasn't great but it too was improving. After a few more weeks she went from her walker to her cane to unassisted. Praise God. It was unbelievable to witness this transformation. She had not driven a vehicle in years and she was once again able to get behind the wheel again.
To this day Jenn is walking without assitance and I still give her a B-12 shot once a week. Given the nature of MS we have no idea if she will have to use her cane, walker or wheelchair. We still have all 3 and they sit in our garage collecting dust and for Jenn they serve as a consistent reminder to never take walking unassisted for granted.
I would love to tell all of the MS fighters to take B-12 injections and you will be better but that was be very reckless on my part. In Jenn's case B-12 ended up being something that really works for her. I do truly believe that for every MS fighter there is something or a combination of things that will provide great help. Since MS is so individual it is a trial and error process. Just know it can happen.
One thing I forgot to mention. Wheelchairs are expensive. Jenn's was a very basic manual wheelchair. In our case insurance did not cover it and we simply didn't have the money to purchase one. I did make a call to our chapter of the National MS Society and they provided us with a connection that we used and were able to get the wheelchair at a much reduced cost. If you need to check with your local chapter. If you are not sure how to contact your local chapter go to www.nationalmssociety.org and click on the "Find a Chapter" link at the top.
The reaction to her recovery was overwhelming to her. For years we participated in the MS Walk and we would see a lot of the same people year after year. They saw her go from using a cane, to a walker and then a wheelchair. The next MS Walk she showed up with no cane, walker or wheelchair and she told me straight up "I am walking it this year. I don't care how tired I am after I am walking". It really hit us when we showed up to the walk and the other MS fighters saw her walking unassisted. She had countless people coming to her crying tears of joy and hope. They all wanted to know what she did to accomplish this. Jenn was overwhelmed with this unexpected attention. She is someone who does not like being in the spotlight and does not look for it.
At one point she turned to and asked "why me? I am nobody special". At that very point it hit me. I looked her and said "you have a testimony to share with people. You represent hope and people have seen it first hand and they are inspired by it". She was not able to complete the full route of the MS Walk that year and had the shuttle bring her back. When she got back I asked her how she was feeling and she said "I'm exhausted, but I wouldn't trade it for anything".
Next post: The National MS Society is your friend.
Thanks for reading,
-Brent
Reject Defeat
