Peripheral Neuropathy...Any experience?

[horizon200]

My Dad is 75 and has been diagnosed with Peripheral Neuropathy for about a year now. Lately it has become considerably worse. He has fallen 4 times in the past week and a half. Twice with injuries. Last night my brother called me (Dad lives with my brother). he had fallen and taken my brother down with him and he couldn't get him back up. I went down and helped. Dad has basically lost coordination in his arms and legs. Any pressure sends the arms and legs into uncontrollable spasms. We got him back to bed and called the ambulance and he was admitted last night. We have an appointment with a specialist on Tuesday.

It's really hard to watch a man that has been so self sufficient for so many years reduced to having someone do everything for him. He no longer has any independence and you can see it starting to sink in with him that his way of life has just changed completely.

We have taken the first steps tward residence in a new Veteran's home nearby. I have a friend that works there and we know he will be close by but with people that can care for him all day while we are at work.

So, I am just curious if anyone else has experience with this.

[roni]

Gosh Mike - not at that level.

You might search some diabetes sites since neuropathy is a common complication of diabetes.

Best wishes and thoughts for you and your family. Sounds like you Dad has caring kids - he is fortunate

[Jacko]

No experience here, Mike...but I can imagine how difficult this is for you...hang together and hang tough...here is a site I googled ..Best wishes to you and your family.

[horizon200]

Thanks Roni and Jacko...He is not diabetic, but I have looked over a few sites relating to it. Hopefully, we will find out more on Tuesday.

[Mamacita]

Mike, I'm so sorry to hear this. It's really hard caring for parents. I don't have any experience with this in particular but I remember JoaineBlon saying her husband has it. Maybe she'll chime in but I don't think he's to this level.

My father in law became very ill with liver disease and some colon problems and was in the hospital 6 hours away from us and dying. Finally they had gotten him as well as they could and his insurance co said "time to go". Since they couldn't afford a nursing home the only choice would have been for my MIL to take him home. An impossible situation. Nothing else to do but have us move out of our master bedroom, rent a hospital bed, and move them in with us. We got him well enough that they are now living on their own here, but each month they are more and more dependent on us. He's basically a shut-in. It's a lonely and tough for my MIL. It's really hard on the caregivers. I will keep your family in my prayers.

[Just Lucky]

I'm sorry to hear about this Mike. While mine is not as severe as your dad's is, I have peripheral neuropathy.

Feel free to PM me with anything. I'll try to help. The MGH neurology forum has some good info on a variety of neurological conditions including his. BrainTalk Communities - Powered by vBulletin

[JoanieBlon]

So sorry that your dad is having problems with peripheral neuropathy and that you and your family then must deal with the side effects.

My husband Mike, who is currently 56, has suffered from peripheral neuropathy in his legs and feet for about 8+ years now. It started up while he was in his 40s. He has JUST NOW been diagnosed with diabetes problems. Back when the neuropathy first started up, he was tested for EVERYTHING UNDER THE SUN (from AIDS to brain tumors and everything in between) with NO results for why he has this. Thank goodness we have excellent health insurance. Peripheral neuropathy IS a common condition that comes with diabetes. However, Mike did NOT have diabetes at the onset ~ or for years afterwards.

Mike has never fallen as a result of the pain, tingling and numbness in his feet and legs. Also ~ over the 8+ years that he's had it, it hasn't gotten any worse, nor has it gotten any better. He's learned to live with it. In the beginning, a neurologist that Mike was seeing wanted him to take massive doses of Neurontin which helps mask the feelings, but it made Mike so dizzy and loopy ~ even at 1/30 the dose that the neurologist wanted him to take ~ that he refused to take it and stopped going to that doctor. A few years ago, our family physician prescribed Lyrica which Mike takes occasionally if he is having a brief "flare-up" of pain. The Lyrica REALLY helps him for pain when he flies. For whatever reason ~ cabin pressure, sitting still for too long, being cramped with too long legs in a too small seat space ~ or perhaps all of these ~ flying REALLY aggrevates the peripheral neuropathy. The Lyrica makes it bearable (actually comfortable) to be on an airplane. Good thing ~ we LOVE to travel! Lyrica can have side effects ~ such as swelling of the feets ~ so Mike only takes them when absolutely necessary.

Because Mike cannot feel his feet, I take a good look at them every evening to make certain that he's not injured them in any way. Good skin and foot health ~ including taking care of toe nails and heels ~ is imperative when you have this condition.

Good luck to your dad (and you too) with all of this. Be prepared for him to go through a battery of tests to try to determine the cause of the problem. Is it possible that he might be having mini-strokes that are causing the falls instead of the peripheral neuropathy?

[Joana]

I am really sorry to hear about this and positive thoughts are headed your way.

Over the years I have seen a number of patients with peripheral neuropathy- both diabetic and non-diabetic, often noone knew the cause. Has it been determined what the cause of his neuropathy is?

There is basically nothing to add to what Joanie said- and the part about taking care of the feet can not be emphasized enough!!!



Joanie- one reason why your husband has more pain when flying could be the decreased pressure that leads to a different bloodflow, thus irritating the nerves.

[JoanieBlon]

Originally Posted by Just Lucky

I'm sorry to hear about this Mike. While mine is not as severe as your dad's is, I have peripheral neuropathy.

Feel free to PM me with anything. I'll try to help. The MGH neurology forum has some good info on a variety of neurological conditions including his. BrainTalk Communities - Powered by vBulletin

Just Lucky ~ thanks for the link to this site. I browsed through it a bit a found a reference to connections between glutin intolerance and peripheral neuropathy. While I am pretty certain that Mike's doctor must have included gluten sensitivity in the initial battery of tests that he went through when he first developed peripheral neuropathy, I'm wondering if it will show any signs of improvement now that he's on the South Beach diet and has removed (temporarily) all wheat products from his meals. Only time will tell, but I've told him to let me know if he noticed that his feet and legs seem to be getting better.

[horizon200]

Thanks for the info Lucky.

Joanie, I'm sorry Mike is suffering through this as well.

Dad, only has slight numbness in his right foot and left hand...more tingling thaan numbness. he has not lost feeling, just coordination. He is strong in all his mucsles. which, when he goes through and episode, makes it more difficult to control him. His arms and legs jerk uncontrollably with the slightest pressure on them...thus when he tries to walk, he falls.

He has been tested for stroke and found nothing. He was on Lyrica and it helped a lot...but the swelling got so bad he had to stop taking it (he has had two heart bybass surgeries, a pace maker and high blood pressure). He is on Pletal...initially for leg pain, but it also helps with his chronic Angina.

We sat around the hospital room all day yesterday waiting for his Neurologist's partner to see him and he never showed! So, I am headed back to the hospital in a few. The hospitalist wants to release him and the PT wants to keep him.

I'll be taking this week off to get him squared away. I'll keep you posted.

[JoanieBlon]

Originally Posted by horizon200

Thanks for the info Lucky.

Joanie, I'm sorry Mike is suffering through this as well.

Dad, only has slight numbness in his right foot and left hand...more tingling thaan numbness. he has not lost feeling, just coordination. He is strong in all his mucsles. which, when he goes through and episode, makes it more difficult to control him. His arms and legs jerk uncontrollably with the slightest pressure on them...thus when he tries to walk, he falls.

He has been tested for stroke and found nothing. He was on Lyrica and it helped a lot...but the swelling got so bad he had to stop taking it (he has had two heart bybass surgeries, a pace maker and high blood pressure). He is on Pletal...initially for leg pain, but it also helps with his chronic Angina.

We sat around the hospital room all day yesterday waiting for his Neurologist's partner to see him and he never showed! So, I am headed back to the hospital in a few. The hospitalist wants to release him and the PT wants to keep him.

I'll be taking this week off to get him squared away. I'll keep you posted.

Good luck today. Hanging around hospitals and doctors' offices is the pitts! We do it a lot.

[horizon200]

OK so today we took Dad to the specialist. She determined that his problem is NOT neuropathy! She said the amount of neuropathy he has for a 75 year old man is almost inconsequential! So, we are back to square one. She is going to further study his case, but it is really out of her area of expertise and she is going to recommend a movement specialist.

The difficult part is not knowing when he will have an episode to where he may fall again. For the past three days, he has been fine. We just never know when it is going to hit him and so we don't want to leave him alone. But we all work.

Anyone have that magic wand handy?

[Mamacita]

Thinking of you and praying for a good outcome.