my fathers disabilaty.?

Question

My father has MS (multiple sclerosis) and I am having a very hard time dealing with his disability. He has been in a wheelchair for about six years and it is very had to understand that hes going to be like that for a while. I've been to a doctor but he said that its normal. I am so worried about him.

Answer 1

You have to go through the stages of grieving, that Elisabeth Kubler Ross talked about. Your Dad may be a help to you, or you can find another friend to talk with, or a counselor.

Try to decide what exactly worries you, and see if you can come up with problem resolutions for those SPECIFIC concerns. Maybe that will help you to feel better, too.

Good luck!

Answer 2

Your feelings are normal. Perhaps going to [e-mail] and typing "Multiple Sclorosis" in the search engine at the top of the page will help you. The site has a great deal of information on many topics. Good luck!

Answer 3

hey julia, this is a part you probaly don't know yet.i'm going through close the same with myself,just got home this morning .wife found me on floor,ambulance,hosp. 2 days later i can't remember anything,i no getting any better ,will get worse.i've already exceptedit sorry<>IS<>

Answer 4

Just love him and visit him as often as possible. Be there for him whenever you can. Sometimes he just needs to know you care and hear your loving voice on the phone.

Answer 5

Here is some info I found concerning MS, I hope that this helps in some way or another. =]

1.) What is Multiple Sclerosis?


An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. Many investigators believe MS to be an autoimmune disease -- one in which the body, through its immune system, launches a defensive attack against its own tissues. In the case of MS, it is the nerve-insulating myelin that comes under assault. Such assaults may be linked to an unknown environmental trigger, perhaps a virus.

Most people experience their first symptoms of MS between the ages of 20 and 40; the initial symptom of MS is often blurred or double vision, red-green color distortion, or even blindness in one eye. Most MS patients experience muscle weakness in their extremities and difficulty with coordination and balance. These symptoms may be severe enough to impair walking or even standing. In the worst cases, MS can produce partial or complete paralysis. Most people with MS also exhibit paresthesias, transitory abnormal sensory feelings such as numbness, prickling, or "pins and needles" sensations. Some may also experience pain. Speech impediments, tremors, and dizziness are other frequent complaints. Occasionally, people with MS have hearing loss. Approximately half of all people with MS experience cognitive impairments such as difficulties with concentration, attention, memory, and poor judgment, but such symptoms are usually mild and are frequently overlooked. Depression is another common feature of MS.


Is there any treatment?


There is as yet no cure for MS. Many patients do well with no therapy at all, especially since many medications have serious side effects and some carry significant risks. However, three forms of beta interferon (Avonex, Betaseron, and Rebif) have now been approved by the Food and Drug Administration for treatment of relapsing-remitting MS. Beta interferon has been shown to reduce the number of exacerbations and may slow the progression of physical disability. When attacks do occur, they tend to be shorter and less severe. The FDA also has approved a synthetic form of myelin basic protein, called copolymer I (Copaxone), for the treatment of relapsing-remitting MS. Copolymer I has few side effects, and studies indicate that the agent can reduce the relapse rate by almost one third. An immunosuppressant treatment, Novantrone (mitoxantrone), is approved by the FDA for the treatment of advanced or chronic MS.

One monoclonal antibody, natalizumab (Tysabri), was shown in clinical trials to significantly reduce the frequency of attacks in people with relapsing forms of MS and was approved for marketing by the U.S. Food and Drug Administration (FDA) in 2004. However, in 2005 the drug’s manufacturer voluntarily suspended marketing of the drug after several reports of significant adverse events. In 2006, the FDA again approved sale of the drug for MS but under strict treatment guidelines involving infusion centers where patients can be monitored by specially trained physicians.

While steroids do not affect the course of MS over time, they can reduce the duration and severity of attacks in some patients. Spasticity, which can occur either as a sustained stiffness caused by increased muscle tone or as spasms that come and go, is usually treated with muscle relaxants and tranquilizers such as baclofen, tizanidine, diazepam, clonazepam, and dantrolene. Physical therapy and exercise can help preserve remaining function, and patients may find that various aids -- such as foot braces, canes, and walkers -- can help them remain independent and mobile. Avoiding excessive activity and avoiding heat are probably the most important measures patients can take to counter physiological fatigue. If psychological symptoms of fatigue such as depression or apathy are evident, antidepressant medications may help. Other drugs that may reduce fatigue in some, but not all, patients include amantadine (Symmetrel), pemoline (Cylert), and the still-experimental drug aminopyridine. Although improvement of optic symptoms usually occurs even without treatment, a short course of treatment with intravenous methylprednisolone (Solu-Medrol) followed by treatment with oral steroids is sometimes used.


What is the prognosis?


A physician may diagnose MS in some patients soon after the onset of the illness. In others, however, doctors may not be able to readily identify the cause of the symptoms, leading to years of uncertainty and multiple diagnoses punctuated by baffling symptoms that mysteriously wax and wane. The vast majority of patients are mildly affected, but in the worst cases, MS can render a person unable to write, speak, or walk. MS is a disease with a natural tendency to remit spontaneously, for which there is no universally effective treatment.


What research is being done?


The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research in laboratories at the NIH and also support additional research through grants to major medical institutions across the country. Scientists continue their extensive efforts to create new and better therapies for MS. One of the most promising MS research areas involves naturally occurring antiviral proteins known as interferons. Beta interferon has been shown to reduce the number of exacerbations and may slow the progression of physical disability. When attacks do occur, they tend to be shorter and less severe. In addition, there are a number of treatments under investigation that may curtail attacks or improve function. Over a dozen clinical trials testing potential therapies are underway, and additional new treatments are being devised and tested in animal models.

In 2001, the National Academies/Institute of Medicine, a Federal technical and scientific advisory agency, prepared a strategic review of MS research. To read or download the National Academies/Institute of Medicine report, go to: "Multiple Sclerosis: Current Status and Strategies for the Future."


Select this link to view a list of studies currently seeking patients.

Organizations

Clearinghouse on Disability Information
Special Education & Rehabilitative Services Communications & Customer Service Team
550 12th Street, SW, Rm. 5133
Washington, DC 20202-2550
http://www.ed.gov/about/offices/list/osers
Tel: [phone] (TTD)
Fax: [phone]

International Essential Tremor Foundation
P.O. Box 14005
Lenexa, KS 66285-4005
[e-mail]
http://www.essentialtremor.org
Tel: [phone]
Fax: [phone]


Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, NJ 08002
[e-mail]
www.msassociation.org
Tel: [phone]
Fax: [phone]

Multiple Sclerosis Foundation
6350 North Andrews Avenue
Ft. Lauderdale, FL 33309-2130
[e-mail]
http://www.msfocus.org
Tel: [phone]-MSFOCUS (673-6287)
Fax: [phone]


National Rehabilitation Information Center (NARIC)
4200 Forbes Boulevard
Suite 202
Lanham, MD 20706-4829
[e-mail]
http://www.naric.com
Tel: [phone] (TTY) 800-346-2742
Fax: [phone]

National Ataxia Foundation (NAF)
2600 Fernbrook Lane North
Suite 119
Minneapolis, MN 55447-4752
[e-mail]
http://www.ataxia.org
Tel: [phone]
Fax: [phone]


National Multiple Sclerosis Society
733 Third Avenue
6th Floor
New York, NY 10017-3288
[e-mail]
http://www.nationalmssociety.org
Tel: [phone] (FIGHTMS)
Fax: [phone]

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48201-2227
[e-mail]
http://www.aarda.org
Tel: [phone]
Fax: [phone]


National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
[e-mail]
http://www.rarediseases.org
Tel: [phone] Voice Mail 800-999-NORD (6673)
Fax: [phone]

Well Spouse Association
63 West Main Street
Suite H
Freehold, NJ 07728
[e-mail]
http://www.wellspouse.org
Tel: [phone]
Fax: [phone]


Paralyzed Veterans of America (PVA)
801 18th Street, NW
Washington, DC 20006-3517
[e-mail]
http://www.pva.org
Tel: 202-USA-1300 (872-1300) 800-424-8200
Fax: [phone]

Accelerated Cure Project for Multiple Sclerosis
300 Fifth Avenue
Waltham, MA 02451
[e-mail]
http://www.acceleratedcure.org
Tel: [phone]
Fax: [phone]

2.) http://www.nationalmssociety.org/site/PageServer?pagename=HOM_GEN_homepage