Comments on: Multiple Sclerosis, Wheelchairs and Lifespan

By: Ron

Ron — Sun, 16 Oct 2011 21:39:34 +0000

Thank you so very kindly, Rick, for your wonderful words as they were from the heart. While the love Liz and I had/have was indeed deeper than I had ever hoped for or even thought possible, I had been told that the pain would pass within several weeks. It really has not. Strong love indeed feels deeply, Rick. True, only time will help make the pain I now live with tolerable, it will never disappear as nothing feels right….joy has left my being for now and I must find inner strength to change the image I still live with when I close my eyes of my beautiful Liz lifeless in my arms. I’ve not yet been able to find those joyous images in my mind of Liz when she was healthier as I so desperately seek them. In time I hope lest I lose myself forever.

Never take true love for granted and always cherish the one you truly love as it really can change, literally, in an instant. Liz’s doctors told us she would, most likely, live a near normal lifespan and obviously that wasn’t the case. I pray a real cure will soon be found for this most horrible disease as I can only hope others will be spared the grief I am living with. As Liz’s caregiver for the last 11 years of her life, we lived with the hope of a cure. May others soon live with the cure!

Again, thank you kindly, Rick, for your comforting words.

Ron Rank

By: Rick

Rick — Sun, 16 Oct 2011 00:41:13 +0000

Ron, I am so sorry. My heart goes out to you. I know your pain is great. I wish they were available, but there are no words that I or others can say that will assuage your grief or heal your broken heart. Strong love feels deeply.

For both you and her, I am grateful you were present with her. Sharing your grief with us is a gift to our group. Your reminder to ask questions and, more importantly, to cherish our loved ones each day is so powerful.

Please let me know if you can think of ways I can be helpful to you.

–
Rick

By: Ron

Ron — Sat, 15 Oct 2011 15:58:53 +0000

I just lost my wife of 17 years on 9/11/11, a week after her 54th birthday from MS. She had tried the ABC drugs to no avail and her doctors said to care for her and make her as comfortable as possible with no hope left for us. I’ve read so many articles about MS and almost all state that almost all MS patients live a normal or near normal lifespan. If that’s the case, then why did my wife die so young??? The last 2 years, her average heart rate was around 150BPM and when asking her doctors about that, we were always told, “Its okay.” It obviously wasn’t okay. She died in my arms. I performed CPR on her for 30 minutes before medical help arrived but to no avail. Even though its been slightly over a month since I lost my soulmate, I still close my eyes and only see her dead body in my arms and my heart is so broken.

I can only say NEVER take anyone’s word as written in stone. Ask questions and cherish your loved ones as they can be gone in an instant as my beautiful wife was. While they never performed an autopsy on her, I can only suspect her heart stopped before my eyes as she was taken from me. Cherish EVERY moment.

Still deeply in mourning,
Ron
Houlton, Maine

By: Clarissa

Clarissa — Wed, 14 Sep 2011 14:42:21 +0000

I was diagnosed with MS in 2007 and subsequently ended up on disability due to blackouts, fatigue, and balance issues. According to my neurologist, it appears that I have had MS for quite some time. I have numerous lesions in my brain and spinal cord. I have had the muscle twitches, double vision, blackouts, fatigue, imbalance issues, tingling in my hands and feet. So far, the worst issue I have had was when my left foot suddenly, without any warning, becamse paralyzed. Luckily, my husband was walking beside me. He was able to catch me before I hit the floor. Ironically, we were at a “Couples Living with MS” retreat in Mobile, Alabama when it happened. I had been walking normally. But, when I took the next natural step, there was nothing natural about it. It was as if my left foot was gone. I couldn’t feel it or move it in any way. Needless to say, I was terrified. I prayed that the sudden disability would be temporary, and after about 5 to 6 weeks, the feeling and movement slowly began to come back.

That was the worst. It hasn’t happened since then, but I am always aware that it could happen again. I recently burned my hand severely when I lost control of it while boiling some water on the stove. I have been dropping everything I touch and breaking plates and glasses around every corner. My energy level is lower than it has ever been and I don’t know what to do about it. Everyone says to eat lots of fruits and vegetables. And, ordinarily, I would agree with them. But, MS isn’t my only health condition. I also suffer from short bowel syndrome. The majority of my intestines were removed during emergency surgery about 2 years ago. Because of that, my body has problems absorbing nutrients from the foods I eat. I have been hospitalized for malnutrition (had lost weight down to 95 pounds – down from 335 pounds). So, for one illness, I have to stay away from fruits and vegetables because my body needs no help purging anything I eat. My internal medicine doctor calls my system the “express”. While on the other hand for my MS (I call her Ms. Missy), I need the same fruits and vegetables.

I get two different opinions – one from my neurologist regarding medications and meals for MS, and another from my internal medicine doctor regarding my short bowel syndrome. It’s like I have to choose which is more of an emergency. Right now, the short bowel syndrome seems to be winning out in the “emergency” department. I have realized that if I die of malnutrition or complications from it, I won’t have to worry about MS or anything else. I have almost died three times in the last year due to complications from my short bowel syndrome.

If anyone, whether it be a physician or a stranger with any advice or a simple prayer, please e-mail me. I have become basically home-bound as I can’t drive most days. It would be nice to talk to someone who can TRULY understand what I and everyone else with MS is going through.

I know I have typed a novel here. But, once I started, the words just kept flowing. Whoever reads this, I hope you are doing well and continue to do well. God bless you.

Clarissa
Ozark, Alabama

By: Vicki

Vicki — Wed, 07 Sep 2011 09:26:16 +0000

My mother is 78 and has had MS for 44 years . She walked with a stick up until 7 years ago. She has been in a wheelchair since. She has also been in a Nursing Home since 2004. Health wise she will outlive us all. She is not on any medication for anything. Memory is a bit poor but we don’t know where MS leaves and Dementia takes off. My dad was her primary caregiver up untill 2004. Mum is happy and bright and has always looked on the bright sie of things.

By: Scot

Scot — Tue, 12 Jul 2011 04:26:33 +0000

Jim,

Actually, you are not correct. There is significant research supporting diets with increased lipids tend to display increased exacerbations. This isn’t concrete, it is only in the research phases, but it is relevant. Another factor, Vitamin D levels, was something that wasn’t thought to be relevant even 10 years ago, but is know considered a factor as well.

I do agree, many things play a role in MS, but rushing in and saying diet has no role is a bit hasty.

In terms of prayers, this too is hasty. A positive attitude can play a major role in disease progression. For many, prayer plays a big role in positivity. To discourage this is nothing short of reckless. Many neurologists agree, just like MS follows no particular course, neither do the treatments and mental approaches to handling the disease. In other words, MS is an “individual disease”, which means that it requires “individual” care.

I’m not going to cover the differences in Progressive and Remitting MS in this reply. What you addressed in your response was both, whether you realize it or not.

By: Layli

Layli — Wed, 29 Jun 2011 16:44:24 +0000

I totally agree with you Sam a good diet, great support system and Prayers could take you a long way! i have a friend who’s been living with MS for 20 yrs and is doing great.

By: Jim

Jim — Thu, 26 May 2011 11:22:31 +0000

This comment is so untrue it is laughable. Diet is not a significant contriburing factor in MS progression. It is only one very small piece of a very complicated puzzle. Most individuals suffering with pregressive MS are trying everything possible to prevent the progression – and often it doesn’t work. Saying that all one needs is a good diet and prayer is promoting false hope.

By: Sam

Sam — Tue, 24 May 2011 08:06:05 +0000

My brother was diagonised with the disease 10 years ago and he’s still doing well, all one need is Prayers and good eating,’diets’

By: dian

dian — Sun, 22 May 2011 04:12:01 +0000

hi there, i got MS since 2 years ago and im on manual wheelchair now. you can search the MS on internet and you may find much about it and how to survive with it. nice to know you all :)

By: gbb

gbb — Tue, 03 May 2011 05:01:38 +0000

Sorry to hear about your brother’s problems. In my son’s case, I was told that since he recieved disability (SSI) he was automatically eligible for Medicaid. We have private insurance on him as well as Medicaid. In addition, I contacted Community Long Term Care (may be called something different in each state), and they help us with some of the supplies that my son needs. Usually there is a long waiting list for this service, and it’s based on severity of the person’s problems. For example, would the person be eligible to go into a nursing home facility because of the level of care needed? If your brother would fit that category if he didn’t have family help, then his position on the list would move up. Understand that with all the budget cuts, some of these organizations have suffered from funding cuts, which translates into limiting what they can do to help. In addition, I would check into his ability to get food stamps. If receiving disability, a person should be eligible for food stamps if he doesn’t have any savings or doesn’t live with anyone who has money coming in. As far as I know, there is no help out there for putting in a ramp or shower seats unless your insurance does it, or if the person is retired military. We’ve had to pay for all of that, and currently we’re looking at the personal expense of buying a hospital bed, since private insurance nor Medicaid will pay for it.

As a side note, I have a friend in the medical field, and she says that the Jerry Lewis Foundation sometimes helps MS patients, but I haven’t seen it first hand. Hope this helps a little.

By: Nancy

Nancy — Tue, 12 Apr 2011 00:38:21 +0000

My brother was diagnoed with MS years ago. Up until last summer it was very manageable. It has progressed over this last winter to where he is now permantely in an electric wheelchair. He is unble to feed/cloth himself. His fiance is doing all this for him., but am afraid she may hurt herself in picking him up. He isn’t a small man. They are in need of help in many areas. Now need a ramp built for the home. Shower equipment. etc.etc.etc. Soon will most likely be needing supplies. He lost his job a couple years ago when the plant shut down. So no medical benefits. and living on unemployment. His home had burnt to the ground last fall., unfortunately his home insurnace was cancelled. So no help with obtaining a new home. He cashed in his 401K to buy a double wide home. He has finally started receiving Social Security Disability which has really helped with utilities, food. etc. But they are in need of help with medicine, physicians visits and so much more.
Is there anyone they can contact to get some sort of help with anything they may need?? I have given them so many phone numbers to call, but they keep getting pushed onto another person and so on, IF you could be of any help, please write back so I may give them this information.
I do not know much about MS, just that he had been dealing very well with it, until this last winter, like I said previously, it has progressed so rapidly now that he is in a wheelchair. I know the MS scale ranges from 1-10, I think he is at a 7-8, (completely wheelchair bound). My brother is not one person who wil ask for anything, he just suffers, therefore I am trying desperately to seek any information I can give them.
I wish to thank you so much for any information or help you may provide.